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Author Topic: Harvoni Side effects  (Read 2139339 times)

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Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1700 on: March 30, 2015, 01:31:49 pm »
Fibroscan is fine for certain conditions.. It appears to be very accurate at measuring cirrhosis.  However it's accuracy suffers when dealing with fibrosis in the mid range.  As a confirmation for cirrhosis, fine.. But as for accurate staging in the F1-F3 areas, the biopsy is still the gold standard... There have been many threads on several of these Hepmag forums by global mods that refer to this.. In addition, Fibroscan is not recommended for those with ascites, morbid obesity and/or large amounts of chest wall adiposity.   Henryford.com is singing its unmitigated praises, no doubt, because their locations have  become the first in their area to have implemented it, and, therefore, have a keen interest in marketing it as effectively as possible.

Im not condemning it; just stating that, in the mid ranges of staging, the Biopsy is still preferred.

Good information. Thanks.

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1701 on: March 30, 2015, 01:48:39 pm »
Hi Dragonslayer,

Thanks for the information.  What about Fibrosure, which I think is a blood test?  I'd like to do another test to see where I am now, but would prefer it to not be invasive like my biopsy was.  Do you know about these?  Or does someone?

@ (you) crazycanuck ;)  just wanted to know I'm thinking of you and sending you positive thoughts and prayers that you do well through treatment and will soon be able to see the day that you know it was all worth it and you will be doing the "I'm cured, Happy Dance".  Hang in there!  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #1702 on: March 30, 2015, 01:58:03 pm »
Hi Dragonslayer,

Thanks for the information.  What about Fibrosure, which I think is a blood test?  I'd like to do another test to see where I am now, but would prefer it to not be invasive like my biopsy was.  Do you know about these?  Or does someone?


From here:

http://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring/evaluation-staging/core-concept/all

I found this:

"Liver biopsy continues to be the gold standard for diagnosing other causes of liver disease and establishing severity of fibrosis.
Noninvasive serum markers used show clinical utility in predicting presence or absence of significant fibrosis/cirrhosis, but are not useful in differentiating between intermediate stages of fibrosis; these markers may serve as good clinical alternatives in patients who are not candidates for liver biopsy."

So  it sounds like Fibrosure is like Fibroscan in that its strength is in identifying cirrhosis fairly accurately, but suffers in staging the mid range.
« Last Edit: March 30, 2015, 01:59:34 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1703 on: March 30, 2015, 02:08:10 pm »
Well, shoot!  Looks like to be satisfied, I'd wind up feeling that I still needed a biopsy to be sure of anything past what the fibrosure/scan revealed.  I'm too picky to not get to the very bottom of something ;)  Thanks Paul.

...Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline hc

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  • Posts: 4
Re: Harvoni Side effects (memory loss)
« Reply #1704 on: March 30, 2015, 02:22:22 pm »
I just joined this forum in order to find out if anyone can offer insight based on experience with Harvoni side effects to help my family understand what is happening with my mom--specifically, sudden onset of memory loss. She has had Hepatitis C for many decades, is in her early 80s, and started Harvoni treatment in January. She has several other medical conditions for which she takes medication, including medicine to shrink a pituitary tumor.

In the last couple of weeks, toward the end of the Harvoni 12-week cycle, my mom experienced congestive heart failure and was put on oxygen. This past week, while her oxygen levels improved and she was able to stop the oxygen tank, she began to experience serious confusion and memory loss and symptoms that present like dementia. Testing revealed a kidney problem, so her doctor took her off the Harvoni with 6 pills remaining. The kidney problem has resolved itself, but my mom's memory has not returned. In addition to bloodwork, she has had an MRI, a spinal tap, and is going for an EEG this week. Doctors do not know the cause of the sudden memory loss as yet.

We are wondering if her sudden memory loss could be either a side effect of Harvoni, a side effect of the combination of Harvoni and one of the other medicines that she is taking, the result of a possible mistake in her dosage due to confusion on her part, or ???? If you have had or know of anyone who has had memory loss while taking Harvoni, please reply.

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #1705 on: March 30, 2015, 02:48:20 pm »
>> HC, the doctors would be the best judge of what is causing her apparent dementia.  However, I havent come across any information indicating that Harvoni would be responsible for this condition...  Without knowing the condition of your mom's liver, its hard to know whats causing it, however, in instances of cirrhosis, a symptom called 'brain fog' occurs in some patients due to ammonia build up in the blood from the impaired liver.  My mom has had dementia from her early 80s  and she never had HCV; most likely is Alzheimers in my mom's case... That would also be a suspect.  In addition, Ive read where renal impairment can cause symptoms like this... Again, we're not doctors here, but have done a fair amount of research on subject such as this...  The doctor is the place to go for more definitive diagnosis.. Hope your mom feels better..

>>Island Girl, I understand your reluctance to get a biopsy.. Ive had 2.. The first was accompanied with significant pain, as the only anesthesia I got was a local injected ahead of the biopsy needle.  The second was a picnic; my doctor injected a little fentanyl along with a mild sedative.. I was awake completely but felt Zero discomfort.  So experiences vary.  If you want to rule in or out cirrhosis, I think the non invasive tools are good.. I would like to keep tabs of my liver condition as well now that treatment is over.   And Id like to use Fibroscan to make sure Im not approaching cirrhosis.. However, my two biopsies scored me in the Stage 0-1 range, and the last thing I want is a Fibroscan, the inaccuracies of which are well known in the mid range, to mistakenly score me an F2, or F3 instead of an F-1, if thats what I really am....   
« Last Edit: March 31, 2015, 02:30:39 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline SIXFOOTFOUR

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Re: Harvoni Side effects
« Reply #1706 on: March 30, 2015, 02:57:04 pm »
Hi HC

Sorry to hear of your mothers problems.

Im not a MD, but am on Harvoni, appox 30yr Hep C +, and I am in Health Care as a Respiratory Therapist (20 yr now in neonatal care). Often there are long or short term memory loss associated with hypoxic episodes caused by any number of pulmonary problems -CHF-COPD etc. Since I have not read anywhere about Harvoni and memory loss Id look at the cause and need for O2 and how low was her Pa02 before she was treated. Is she now stable with O2 and has any of the memory improved?

Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline Trenz

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Re: Harvoni Side effects
« Reply #1707 on: March 30, 2015, 03:12:51 pm »
hc. I don't know if its pertinent, but I had sudden memory loss and then Hepatic Encephalopathy a couple of months ago, at the end of treatment with Solvaldi/ribavirin/interferon. My memory has returned and I've been taking Harvoni and riba the last 6wks, no memory loss, just fatigue. I think everyone processes these powerful drugs differently and add in the factor that most of us are taking meds for other maladies and just about any side effect is possible. I'll say a prayer for you and your mom

Offline pumpkin50

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Re: Harvoni Side effects
« Reply #1708 on: March 30, 2015, 03:20:20 pm »
I don't know how to be active when I can't sleep and have no energy. Even when I sleep I'm exhausted the next day. I do have good days. I even had a good week but it's gone and back to normal.

I'm tentative to make plans or appointments in case I'm too tired or have muddled thinking. When that happens I get shaky and have to sit.

That's not how it is every day but this week, most days.  I'll be fine for a day or two then have a couple of days where I only last, energy wise, for a couple of hours. If I'm out and get tired I feel almost claustrophobic because I want to get home to lay down.

I want to get back to working out. Mildly, at first but I need to get moving - as soon as I feel better.
[/quote




Yes this is exactly how I feel and its horrible!!  Today marks 2 weeks on Harvoni and I have been very fortunate to not have any symptoms and am actually sleeping better without the help of Benadryl as before.. But my baseline exhaustion (even when I sleep well) and the most days than not feeling like I have a hangover (without the headache ) is very difficult!  I do have some good days but only 1 last week which was Friday and all the rest have been exhaustion and yes I relate to it being difficult to make appts and make plans as you never know how you are going to feel!  I have found that trying not to do too much in 1 day helps so pacing myself and also getting outdoors in the fresh air helps or mabey a walk.  Last friday I felt good and I went to the gym and after my workout I sat in the steam room for 20 minutes which was glorious,, But today I can hardly walk to the bathroom!! I am going to force myself to get up and go outside and make sure to eat well and drink water and hopefully tomorrow will be a better day!!  Great day to you all!!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1709 on: March 30, 2015, 03:29:45 pm »
I'm so jealous you two lost weight!! @Islandgirl and @David.

Sheesh.....................

;-)

I'm going to sue Gilead.
;-)

LOL at Meg. Thank you for the laugh! I have a day that I have to 'push through' being tired and I am exhausted but these-three appointments this week non-medical related. I've been waking up early for no apparent reason which, of course, makes me even more tired. Off to the real world when I just want to go back to bed!

Offline hc

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Re: Harvoni Side effects
« Reply #1710 on: March 30, 2015, 03:34:00 pm »
Thanks so much for your replies. Doctors have been testing my mom and do not have an answer for us regarding the memory loss, which is why I am posting here. The hepatitis C has progressed very slowly in her case and her liver is still fairly healthy, however, I am aware of the condition "brain fog" and she has had symptoms that correspond with that condition for awhile. My mom was taken off the oxygen tank last week because her oxygen levels had sufficiently improved. However, her memory problem and confusion became dramatically worse after the oxygen problem. I don't know whether her oxygen levels have been measured again since then--we live in different cities. I will try to find out.

Offline TTSP

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Re: Harvoni Side effects
« Reply #1711 on: March 31, 2015, 11:13:34 am »
Thanks Paul,
Your interpretation on the subject of biopsy to Fibroscan is the same as mine. I continue to look for more info on the subject. I don't like to buy into one stream of information either.

To all, hang in there. And best wishes.  8)


Offline EleanorB

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Re: Harvoni Side effects
« Reply #1712 on: March 31, 2015, 02:59:02 pm »
Just weighing in again on the side effects for those starting out: I am on week 3 of Harvoni

The nausea and dizziness were really bad at first, now they come in waves, but somewhat better - usually in the 2-3 hours post taking the meds.
Same with the headache
The rash on my lower limbs (both arms and legs) came and went.

Drinking lots really helps, pushing through is an option (or not - when I am on the job there is no rest), but probably better to take it easy in terms of letting your body heal.

I am at a viral load of 150,000 after 2 weeks after 530,000 at baseline, so I guess I am responding, but had actually hoped for it to go a bit faster. Patience, grasshopper! and hold your thumbs for good luck.
Hep C infection probably via transfusion 1976
Known positive since 2007
VL 500,000
Harvoni start date 3/13/15
UND as of 4/9/15 (4 weeks)

Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1713 on: March 31, 2015, 03:49:50 pm »
Hi everyone, I have all my labs from the week 4 tests.  I asked them to add Vitamin D as I read on here that some had lower levels.  Mine were low and they put me on a one pill a week supplement.  My blood platelets are still at the ALERT level of 51 and almost UD for the viral load.  Here is my before treatment started and 4 weeks later tests.

« Last Edit: March 31, 2015, 07:54:15 pm by SunIsOut »

Offline EleanorB

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Re: Harvoni Side effects
« Reply #1714 on: March 31, 2015, 04:15:31 pm »
@ sunisout

What a great drop in viral load and ALT/AST! Congratulations, you are on your way!
Hep C infection probably via transfusion 1976
Known positive since 2007
VL 500,000
Harvoni start date 3/13/15
UND as of 4/9/15 (4 weeks)

Offline SunIsOut

  • Member
  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1715 on: March 31, 2015, 04:17:38 pm »
@ sunisout

What a great drop in viral load and ALT/AST! Congratulations, you are on your way!

Thank you!  I just added some data and replaced the chart with the log and standard range.  Yes, this is such a great treatment.  I have zero health issues besides this and  consider myself very fortunate.  :)

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #1716 on: March 31, 2015, 04:22:31 pm »
Sun, Nice results on the viral load and liver enzymes.. Just curious; whats going on with your Glucose?  You go from Above normal to Below normal.   
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline SunIsOut

  • Member
  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1717 on: March 31, 2015, 04:30:33 pm »
I took the labs in the morning before eating and I think it is a time of day thing where they were not worried. The Vit D was way low but I did not want to take an average supplement as it can cause kidney stones if you take too much so I am letting them prescribe that.

The big one is blood platelets as that is a sign from cirrhosis where the blood cannot fully flow through the liver and enlarges the spleen.  I am hoping the Serrapeptase enzyme is going to help that and will have to watch it. I bruise easy and bleed way to much on small cuts and such from sailing and gardening.  I fell while snow skiing and landed on my elbow where my arm was black, blue, purple from the bicep to near the wrist area.

Good stuff coming though and I am very encouraged.

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1718 on: March 31, 2015, 06:10:08 pm »
Sunisout, I'm so happy to see your VL so improved, congrats!  As you said, "good stuff coming through" and it is extremely encouraging!  BTW, I also bleed and bruise easily and we're watching my platelets.  Because of your earlier post, I also ordered the Serrapeptase enzyme; thanks for mentioning it.  Wishing your the best!!!!

...Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1719 on: March 31, 2015, 06:47:22 pm »
Serrapeptase

http://www.webmd.com/vitamins-supplements/ingredientmono-1115-serrapeptase.aspx?activeingredientid=1115&activeingredientname=serrapeptase

Bleeding disorders: Serrapeptase might interfere with blood clotting, so some researchers worry that it might make bleeding disorders worse. If you have a bleeding disorder, check with your healthcare provider before using serrapeptase.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1720 on: March 31, 2015, 07:06:03 pm »
Thanks, Lynne.  She has had some lab work done to rule this out and we will be discussing on Thursday.  ...Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1721 on: March 31, 2015, 07:28:37 pm »
Serrapeptase

http://www.webmd.com/vitamins-supplements/ingredientmono-1115-serrapeptase.aspx?activeingredientid=1115&activeingredientname=serrapeptase

Bleeding disorders: Serrapeptase might interfere with blood clotting, so some researchers worry that it might make bleeding disorders worse. If you have a bleeding disorder, check with your healthcare provider before using serrapeptase.

I did discuss it with mine and my hope is that it eats dead and inflamed tissue and that will include liver tissue as well.

Excerpt
"Dead and inflamed tissue are two important causes of the majority of ailments in the body. Serrapeptase digests (dissolves) tissue that is dead, blood clots, arterial plaque, cysts and tissue that is inflamed,and then they are then dispersed. It induces the breaking down of tissue that is fibrinous, and reduces the thickness of exudates (leaked fluids). These substances then change into harmless Amino Acids by Serrapeptase and our bodies then treat them as normal waste products. The inflammatory tissue is actually digested by this remarkable enzyme. Research studies show that this naturally occurring serra enzyme has amazing anti-inflammatory, pain relief possibilities. - See more at: http://www.serrapeptase-info.co.uk/#sthash.iHe3Gbsc.dpuf"

I can definitely tell where this has helped the pain I used to have in my finger joints and elbows.  I know that there is a potential conflict but my mean platelet volume MPV is normal.

The effect counter effects can be overwhelming though and I do discuss with my health care providers.  They are only letting me take Vitamin B, L-theanine and serrapeptase while on Harvoni.  This is a great little forum.  :)

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1722 on: March 31, 2015, 07:31:17 pm »
Do you have either the PTT or INR test done? PTT Prothrombin time or international normalised ratio (INR)?

Those are tracked for me because of cirrhosis

PROTIME      normal 9.1 - 12.0 sec      result 11.7
INR                                                result 1.1

So you can see my Protime is nearing the high end of normal.

For me this is why I also have unexplained bruising and prolonged bleeding, just another symptom of cirrhosis but at least still barely in normal range so not high enough to increase my MELD score. Also another reason people with cirrhosis need to avoid NSAIDS like Advil and Aleve as well as aspirin.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline SunIsOut

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  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1723 on: March 31, 2015, 07:55:17 pm »
Do you have either the PTT or INR test done? PTT Prothrombin time or international normalised ratio (INR)?

Those are tracked for me because of cirrhosis

PROTIME      normal 9.1 - 12.0 sec      result 11.7
INR                                                result 1.1

So you can see my Protime is nearing the high end of normal.

For me this is why I also have unexplained bruising and prolonged bleeding, just another symptom of cirrhosis but at least still barely in normal range so not high enough to increase my MELD score. Also another reason people with cirrhosis need to avoid NSAIDS like Advil and Aleve as well as aspirin.

Hi Lynn,
Yes I did have that test done and updated my table above to include it and the Vitamin D levels. My test results were very close to yours.  Thanks much. :)
« Last Edit: March 31, 2015, 08:12:03 pm by SunIsOut »

Offline Karen1124

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Re: Harvoni Side effects
« Reply #1724 on: March 31, 2015, 08:13:34 pm »
Hi Everyone,
Has anyone heard of the castor oil pack? I think they help liver and lymph system flow. Google it! I hadn't been doing them while on treatment but I will do them when I'm done again!  Tomorrow I take my last pill!! Then blood work on Thursday!!! Take care everyone! Life is Good!!  Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Lynn K

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Re: Harvoni Side effects
« Reply #1725 on: March 31, 2015, 09:06:59 pm »
Hi Lynn,
Yes I did have that test done and updated my table above to include it and the Vitamin D levels. My test results were very close to yours.  Thanks much. :)

OK sorry missed that looks like you are on it

:)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Katie

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Re: Harvoni Side effects
« Reply #1726 on: March 31, 2015, 09:38:01 pm »
I didn't receive any notifications on the forum activity today and wondered why everyone was so quiet.  Glad I checked it out an saw you have been busy afterall!

Congratulations Sunisout!  You had lots of improvements there! You are definitely on your way and I am so happy for you!  :D  Lynn pretty much asked the questions I had and you answered them  Be careful with anything that thins your blood, but I do know you are diligent.  Glad you had you Vit D tested.  That is really important!   8)

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Bituman

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Re: Harvoni Side effects
« Reply #1727 on: March 31, 2015, 11:46:49 pm »
@Bitumen/Bob.

I learned a lot about managing my fatigue from the CFS boards....it's the reason I piped in last nite about it...that indeed it's different for all of us---its causes, etc...Now that we're older, cardiac issues need to be explored if we have fatigue of unknown causes. Anemia, on and on....Oy vay. ;-)

Bottom line, Bob, as we agree---it's about becoming watchmen for our bodies and looking for patterns, eating and drinking as well as we can. 85-90/10 has been my rule for years. Harvoni therapy has made me go 100% all in re: my food/fluid intake. I've never in my life eaten this cleanly and well, consistently-- I'm entering my 9th week.   Dear God please let it pay off.

Keep on cycling! I can't wait to announce my first bike ride of the season...

Wow Meg!  I feel like a rank amateur re: fatigue when compared with you.  I've not experienced anything similar  and doubt I could "push thru" anything like that.  Seems like the kind of fatigue I can ignore is more so caused by emotional stress, like stress from work.  I think the fatigue that makes me have to tap the brakes is more physical.  Again, the thing that took me a while to figure out was how to distinguish between the two.  I really hope that when you are free of HCV that your fatigue will be a thing of the past.  For sure it will pay off for you. 

I'll be anxious to hear about your first ride!  My riding is going bad because of some long work hours.  Lately more gym time for me and less road and trails. But yesterday evening I rode a trail close to home that I hadn't been on in a while and discovered last years monsoon storms really tore it up.  My old steel hardtail really beat on me.  Maybe I can use that as an excuse for a new full suspension bike?

Friday I go for 8 week labs.  Remain anxious for that so I could qualify for your 8-week thread. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1728 on: March 31, 2015, 11:58:30 pm »
Hi all,

I had a good beginning of the week, well the weekend and Monday but today, in the middle of an appointment, I just crashed..meaning, I got Exhausted! But I had to do a few more things then come right home. Tomorrow, another important meeting and they cannot know I don't feel well. And, again,it's not that I don't feel well but more that my energy has just left me.
I'm on day 19 and was hoping that fatigue would be at least, diminishing, at this point but NO! So, again, I've got to get in the car and meet with someone and not show that I don't feel well.
Wish me luck?
Thanks!

Offline Valsblessing

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Re: Harvoni Side effects
« Reply #1729 on: April 01, 2015, 12:42:28 am »
Hello! I have been reading on here since 3/7/15 when I found out I had been approved for HARVONI. This forus has been a Godsend for me as I have had this disease since, supposedly birth. I am 61 yrs young & have pushed myself thru all my life....I rarely take meds of any sort because of side effects and this forum helped me put that 1st pill in my mouth. I am on day 14. My side effects have been a bit different than expected in that I am sleeping 2/3's of every day....haven't seen others complain of this! My VL is only 480,695 but alt is 89 & ast is 101 as of pre treatment labs....my husband says my body must need this much rest.....I keep thinking it can't last the whole 12 weeks! Any advice ot feed back is welcomed....and, again, this forum is really helping me so much! Thanks, I appreciate all of you......:)

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1730 on: April 01, 2015, 01:53:56 am »
I'm new here, also, but my 2nd week-14 days on Harvoni, has been my hardest. I'm having a very busy week and that's why I posted the above. I'm doing too much. I do lay in bed 1/3rd of the day, at least, but I've felt a bit better now, in my 3rd week. While I am busy right now, I'll take the rest of the week, I hope, to rest.

Try getting up and doing paper work or simple tasks and I've found that I'm learning my energy level and it's enough to get me out but I can't do everything and even have my groceries delivered.

I doubt that I helped you much except to say that you're not alone. Try to do easy things then rest and tell your doctor.

Good luck!

Offline Valsblessing

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Re: Harvoni Side effects
« Reply #1731 on: April 01, 2015, 04:09:22 am »
Kaemicha....hello:) thanks for the feed back....I'm gonna set the alarm at 10:30 AM and try and get my self moving.....I'm fortunate because my husband and I run a business together and he is picking up the slack. He's the one who keeps saying, listen to my body! But, omg, I still have 10 weeks to go! Are you on HARVONI as well? We can exchange notes as we go....take care, and thanks.....:) are you having any side effects? Just curious? Bye.

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1732 on: April 01, 2015, 08:10:00 am »
I didn't receive any notifications on the forum activity today and wondered why everyone was so quiet.  Glad I checked it out an saw you have been busy afterall!

Congratulations Sunisout!  You had lots of improvements there! You are definitely on your way and I am so happy for you!  :D  Lynn pretty much asked the questions I had and you answered them  Be careful with anything that thins your blood, but I do know you are diligent.  Glad you had you Vit D tested.  That is really important!   8)

Katie

@Katie,  This has happened to me off and on - the first time, I thought maybe they weren't doing notifications any more as there were none for literally weeks!  Then suddenly notifications started again.  Disconcerting!  I wondered why we weren't hearing from you :)  I guess we just need to keep checking the forum anyway - must just be one of those "technical glitches".  Glad to hear from you!   ...Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline flipflops

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Re: Harvoni Side effects
« Reply #1733 on: April 01, 2015, 08:36:12 am »
today is day 10 for me and I have not any side effects to mention.  I take my dose at 9:00 pm and go to bed.  I have felt slightly queezy and headachy when I get up but once I get going and drink water, I am good to go.  If I start to get a headache, that tells me I need to drink more water, for me, that is the key.  I work a 40 hour week, continue to exercise 3-4 days per week and keep up with my household.  My fingers are crossed this continues for me.  Its very interesting how this drug affects people so differently. Hang in there everyone!

Offline SunIsOut

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Re: Harvoni Side effects
« Reply #1734 on: April 01, 2015, 12:26:27 pm »
Kaemicha....hello:) thanks for the feed back....I'm gonna set the alarm at 10:30 AM and try and get my self moving.....I'm fortunate because my husband and I run a business together and he is picking up the slack. He's the one who keeps saying, listen to my body! But, omg, I still have 10 weeks to go! Are you on HARVONI as well? We can exchange notes as we go....take care, and thanks.....:) are you having any side effects? Just curious? Bye.

Hi Val,

I am lucky in that I work from home most of the time and travel some but none before this May.  I also have very good health beyond this treatment I do not take any other meds.  I sleep about 8-12 hours depending on the day.  I am getting in my yard and doing my spring work like hand raking the whole yard and re-edging my garden beds with a trench shovel.  I drink a lot of water during this time and try to do about 2 hours of this each day now since last Sunday (just now warming up on the East Coast).

It is great that you husband is supporting you on all fronts and definitely listen to your body and rest as needed and try to get some activity in as well.

I have a lot of vacation and sicktime so I use it as I need it.  Keep fighting!  :)

Offline CHepCFree

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Re: Harvoni Side effects
« Reply #1735 on: April 01, 2015, 01:42:42 pm »
I just spent a couple hundred dollars to obtain a Freedom of Information Act (FOIA) request from the FDA on side effects being reported.   There were only 264 instances of reporting.   There are over 2,000 folks on this blog and I'm sure at least a few thousand more out there on this drug.   PLEASE report your side effects to the FDA no matter what they are, listed or not on the dispensing information.   That is the only way we can get a proper understanding of this powerful new drug.  Many of the reporting of side effects here are not in this FOIA report.    As you probably know there is already one death due to an interaction.   Let's keep the FDA informed so we can be safe.   I have what now seems to be permanent tinnitus as I am now off my 12 weeks of Harvoni for 4 weeks now and no relief.  There are 10 other reports of tinnitus to the FDA. There is only one report of viral relapse on the FDA report and I've seen more than that on blogs.   I wonder how many there really are   Again, please take the time to report any and all side effects to the FDA along with any information you feel important.     Thank you!

Offline skycatcher

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Re: Harvoni Side effects
« Reply #1736 on: April 01, 2015, 01:56:38 pm »
Congratulations Karen1124 for treatment completion!!!!  :) :) :) :)
and SunIsOut for awesome numbers!!!!!!!   :) :) :) :)
 
I go for my first (4) week blood work tomorrow April 2nd. Started Harvoni March 5th and the biggest side effects I've experienced has been headache that started about 7-10 days after starting treatment. I've pretty much had headaches everyday since until yesterday.  I've been taking Advil (Doc's OK-ed this) and it's helped most days but I have been surprised by the intensity of the headaches. I was drinking a lot of water already but I've really been plugging it in around 100 oz a day plus other liquids (non caffeine ). 

The Pharmacy Nurse called to check on things and she said some people's headaches go away or get less intense after awhile. Has anyone experienced this?
   ~   Skycatcher

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #1737 on: April 01, 2015, 02:18:55 pm »
CHepCFree:

>> There is only one report of viral relapse on the FDA report and I've seen more than that on blogs. <<

Can you please point us to the links showing Harvoni relapse?  I want to make sure its real relapse thats being reported, ie, at the 12 wk post treatment marker or later,  rather than a low detected at end of treatment.

Thanks.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Katie

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Re: Harvoni Side effects
« Reply #1738 on: April 01, 2015, 03:17:05 pm »
Harvoni hasn't been available long enough for a 12 week treatment and a 12 week post treatment test.  We will get an idea in the next month or so and then another 12 weeks for the SVR24.  That's the true test.

How are you doing Paul?  I test in another 2 weeks!  nail biting time!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline dragonslayer

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Re: Harvoni Side effects
« Reply #1739 on: April 01, 2015, 03:20:32 pm »
Harvoni hasn't been available long enough for a 12 week treatment and a 12 week post treatment test.  We will get an idea in the next month or so and then another 12 weeks for the SVR24.  That's the true test.

How are you doing Paul?  I test in another 2 weeks!  nail biting time!

Katie

Hi Katie.. Thats what im thinking too.. How can people be reporting relapse when 12 wks post treatment wont arrive for the very first 'pioneers' until mid april?!  Thats why I brought it up.

Guess what?  I test next week!  I wish us both big time luck, and all the rest of those doing svr testing as well.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline WaltFrazier

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Re: Harvoni Side effects
« Reply #1740 on: April 01, 2015, 04:45:47 pm »
Just started week 6 Harvoni.  Undetected week 4.  Drink 100+ oz.  Yesterday was terrible Actually migraine beyond belief and became nauseous and was vomiting with some blood.  Slept 15 hours and feel great again today...crazy...felt like Interferon/Ribavarin again..almost went to hospital....but its all part of the treatment...
54 Y-O Genotype 1a Since 1987
TX 2007 48 Weeks INTFR + RIBR ..Hell!
Week 62 Relapse
On Harvoni 12 week
4 Week Undetected!

Offline moma

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Re: Harvoni Side effects
« Reply #1741 on: April 01, 2015, 05:39:06 pm »
CHepCFree, you are so right on. I came home from the gastro yesterday fuming! We all need to report our side effects. Obviously the doctors won't listen to a damn thing we, who are going through this treatment, say. Only if it is spelled out in black and white from the FDA are our symptoms valid. When I went through Interferon I went to the emergency room. It had drained me of white cell, red cell, I could hardly walk, I had a open blistering ozzing rash from head to toe and had lost 40 lbs in a month. The doc walks in and tell me I didn't know what I was talking about, it couldn't possibly be a reaction from Interferon. At Stanford a week later the doc tells me I have to STOP taking the stuff because it is killing me.
So yesterday I walk in with a rash from Harvoni and the doc tells me "the rash can't be  from Harvoni because it isn't listed as a side effect"! Are you frigg'n kidding me. I called Gilead and asked what to take and they gave me a name of an antihystimine that they had heard worked well from patients. When I asked the doctor for a prescription it was like I was asking for haroin!
By the way the report, undetected with 7 more days to go. But have had this rash for 10 day now. An office visit that I should have left feeling Great, had me leaving really frustrated and angry with these "I'm God" doctors. You know we feel bad enough we don't need to be told we don't know what is going on in our own bodies.
Obviously I'm still pissed!   Ha-Ha, MoMa

Offline SunIsOut

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Re: Harvoni Side effects
« Reply #1742 on: April 01, 2015, 07:43:29 pm »
Are you all going to a Hepatologist?  I am not sure if you are going to gastro that that is specialized enough! I have nurses call me and the pharmacy calling asking about side effects and communicating lab results.  I am very happy with my Doctor and would be upset as you are with the doctors you have.

Offline Keanu2015

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  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1743 on: April 01, 2015, 08:32:32 pm »
Hello everyone! Day 41... tomorrow I'm half way finished! :)

     As with Katie I didn't get an email with activity this time so I checked in anyway! wow busy busy! I had to read a while to catch up! lots of folks I haven't connected with yet. I'm glad to be on the road to freedom with all of you!  Any time CrazyCanuck -happy to help!
Meg and Island girl definitely gotta keep the nutritional info going here! lol I've basically fed myself according to what I'm learning here and a few other things I had up my sleeve also. Definitely get a juicer people! Go with Dean Marten's potion (utube vids Taking responsibility) -- I tweaked to define it- 1 large Cucumber/1/2 a Beet/4 carrots/4 celery stalks. Drink that before meals for a day just to see if he's blowing smoke. Energy out the caboose! lol Sunisout you and my other friends here have been my hepatologist. I'll see my Gastro April 22nd for the first time since Jan 16th. I haven't been able to have a word with him since on treatment. The tests I've taken were driven and chosen by me based on what I see you all doing. At least the nurses comply with me without too much hassle. Really they have had to because I'll get loud. I will make sure I report to the FDA. I actually have some concerns regarding many respiratory issues here that are not reported as side effects there. I felt like I was on the verge of something myself when I first started the drug and It was definitely caused by the drug. Almost pneumonia type symptoms. Anyway, hope everyone is well today! ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Valsblessing

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Re: Harvoni Side effects
« Reply #1744 on: April 01, 2015, 08:47:07 pm »
Sunisout....I've got my grand daughter teaching me how to respond to folks on here....did I personal message you? I'm learning as I go here.....LOL

Offline SunIsOut

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Re: Harvoni Side effects
« Reply #1745 on: April 01, 2015, 10:04:00 pm »
Yes, I did get that email and thank you so very much for it!  I am glad this forum is a positive resource for all of us!  :)

Offline EleanorB

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Re: Harvoni Side effects
« Reply #1746 on: April 02, 2015, 12:58:10 pm »
@ Keanu and @ Moma,

Yes I think it is really important that the patient data we're collecting here gets back to not only the FDA, but Gilead and the NIH. I was asked by CVS Caremark today if I had suffered side effects and when I said yes, they asked if they were bad enough to seek medical help and when I answered no, that was the end of the discussion.

Things I've noticed from multiple posts (and I've got them too) that are NOT part of the "reported" side effects:
Respiratory issues (in my case, like post nasal drip with a froggy cough all the time)
Rash

Anything I am missing? How do we get this across?
Hep C infection probably via transfusion 1976
Known positive since 2007
VL 500,000
Harvoni start date 3/13/15
UND as of 4/9/15 (4 weeks)

Offline Lynn K

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Re: Harvoni Side effects
« Reply #1747 on: April 02, 2015, 01:43:46 pm »
I have had a cough for 17 days since week 17 of treatment Harvoni Riba but I believe it is a cold I caught that is going around other than that only symptom is anemia from the riba. No Harvoni sides to report. Couple of mild headaches that's it.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

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    • LucindaPorterRN
Re: Harvoni Side effects
« Reply #1748 on: April 02, 2015, 03:00:19 pm »
Hi Val,
Congratulations on posting! It's great seeing you here. Did you get your question answered? If not, I can make it a new topic so everyone will see it.
Glad to see you here.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Valsblessing

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Re: Harvoni Side effects
« Reply #1749 on: April 02, 2015, 03:15:10 pm »
Iporterrn...hello there....yes, I see that others are sleeping excessively also....I like all the feed back as I have never taken much in the way of OTC meds or even prescription meds and I now feel assured the others are taking Tylenol for headaches and Benadryl etc.....with no problem. This forum has been a Godsend for me! I was pretty apprehensive and these words have carried me thru all my anxiety. I am so blessed, I am so blessed, I am so grateful! Thank You!

Offline elizabethfaraone

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Re: Harvoni Side effects
« Reply #1750 on: April 03, 2015, 11:05:46 am »
I'm wondering the effects Harvoni has on the heart.
Infected in 1987 in China when MD administered acupuncture with reused needle
Diagnosed 2001
Genotype 1a w/ Q80K polymorphism
Attempted treatment with Interferon/Ribavirin 2003 and stopped immediately
2014 fibroscan no fibrosis
2014 abdominal ultrasound normal
Found gastroenterologist to advocate for me upon Harvoni approval by FDA
Began treatment w/ Harvoni December 2014
Undetected at four weeks
Completed 12 week treatment February 2015
Blood tests normal
ElizabethFaraone@yahoo.com

Offline Keanu2015

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  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1751 on: April 03, 2015, 12:09:59 pm »
Hi Everyone! Day 43-into week 7! I'm feeling pretty good today.

       Hi Elizabeth, I haven't been able to find much if anything about the heart. I do know that some folks here have experienced higher than normal blood pressure. I had that on one or two occasions but then upon frequent testing it always fell back down into normal range. I thought I was having some slight pain there earlier on (Week 2 or 3 I think) but turned out to be something entirely different. I was just starting to exercise harder and was actually having some muscle soreness around the heart area. I believe it was costrochondritis (sp?). I stayed with it but got a little more realistic in my expectations as far as pushing myself. Now I'll notice some discomfort there only after eating something horrible like a bunch of bacon/eggs, a juicy cheeseburger or cheese steak etc. I severely limit that stuff. Sometimes too much milk in a day gives me discomfort there too. I personally know I need to watch my cholesterol due to hereditary reasons. I would say the best thing you can do is just try to exercise as much as possible. Keep your heart pump strong because it will be doing a lot more work moving these dead cells to waste. Drink a lot of water too for the same reason. Hope I was able to help. Happy Friday friends!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline elizabethfaraone

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Re: Harvoni Side effects
« Reply #1752 on: April 03, 2015, 12:18:59 pm »
Hi Everyone! Day 43-into week 7! I'm feeling pretty good today.

       Hi Elizabeth, I haven't been able to find much if anything about the heart. I do know that some folks here have experienced higher than normal blood pressure. I had that on one or two occasions but then upon frequent testing it always fell back down into normal range. I thought I was having some slight pain there earlier on (Week 2 or 3 I think) but turned out to be something entirely different. I was just starting to exercise harder and was actually having some muscle soreness around the heart area. I believe it was costrochondritis (sp?). I stayed with it but got a little more realistic in my expectations as far as pushing myself. Now I'll notice some discomfort there only after eating something horrible like a bunch of bacon/eggs, a juicy cheeseburger or cheese steak etc. I severely limit that stuff. Sometimes too much milk in a day gives me discomfort there too. I personally know I need to watch my cholesterol due to hereditary reasons. I would say the best thing you can do is just try to exercise as much as possible. Keep your heart pump strong because it will be doing a lot more work moving these dead cells to waste. Drink a lot of water too for the same reason. Hope I was able to help. Happy Friday friends!

I'm no longer able to exercise.  I feel sick afterwards just after a short walk.
Infected in 1987 in China when MD administered acupuncture with reused needle
Diagnosed 2001
Genotype 1a w/ Q80K polymorphism
Attempted treatment with Interferon/Ribavirin 2003 and stopped immediately
2014 fibroscan no fibrosis
2014 abdominal ultrasound normal
Found gastroenterologist to advocate for me upon Harvoni approval by FDA
Began treatment w/ Harvoni December 2014
Undetected at four weeks
Completed 12 week treatment February 2015
Blood tests normal
ElizabethFaraone@yahoo.com

Offline dogdave

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Re: Harvoni Side effects
« Reply #1753 on: April 03, 2015, 01:47:02 pm »
Hi Elizabeth,  interesting you mentioned the heart for sides.  In the literature I have read it did mention it could cause problems with amiodarone a drug used to treat Cardiac arrhythmia:
Coadministration with amiodarone may result in serious symptomatic bradycardia. Use of HARVONI with amiodarone is not recommended (5.1, 6.2, 7.2)
as listed on insert or website.
I've had mild arrhythmia, which has been tested by cardiologist.  Wore a monitor and was told not to worry.  I've been on Harvoni for 8 days now and had two mild episodes of mild heart flutters, one while walking and the other during a low sugar incident. Hypoglycemia can cause rapid heartbeat.  It was enough to make pause and wonder.  The walking incident was very, very mild.  The hypo was more intense and subsided when sugar returned to normal (yesterday).  I want to finish this treatment so I will avoid replicating those condition again.  Will mention to my doc.
contracted 1970's dx 1996
non responder to various interferon regimes late 90's
4 Liver Biopsies F2
Fibrosure 12/12/14 stage 4 liver cirrhosis
GT 1a VL 2.7 million beginning treatment
Start tx 3/27/15
4 weeks Labs: 4/23 VL 61
8 weeks Labs: 5/22 VL UNDETECTED!
Finished on 9/11/15, 24 wks of Harvoni

Offline elizabethfaraone

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Re: Harvoni Side effects
« Reply #1754 on: April 03, 2015, 02:03:57 pm »
Hi Elizabeth,  interesting you mentioned the heart for sides.  In the literature I have read it did mention it could cause problems with amiodarone a drug used to treat Cardiac arrhythmia:
Coadministration with amiodarone may result in serious symptomatic bradycardia. Use of HARVONI with amiodarone is not recommended (5.1, 6.2, 7.2)
as listed on insert or website.
I've had mild arrhythmia, which has been tested by cardiologist.  Wore a monitor and was told not to worry.  I've been on Harvoni for 8 days now and had two mild episodes of mild heart flutters, one while walking and the other during a low sugar incident. Hypoglycemia can cause rapid heartbeat.  It was enough to make pause and wonder.  The walking incident was very, very mild.  The hypo was more intense and subsided when sugar returned to normal (yesterday).  I want to finish this treatment so I will avoid replicating those condition again.  Will mention to my doc.

Very interesting.
Infected in 1987 in China when MD administered acupuncture with reused needle
Diagnosed 2001
Genotype 1a w/ Q80K polymorphism
Attempted treatment with Interferon/Ribavirin 2003 and stopped immediately
2014 fibroscan no fibrosis
2014 abdominal ultrasound normal
Found gastroenterologist to advocate for me upon Harvoni approval by FDA
Began treatment w/ Harvoni December 2014
Undetected at four weeks
Completed 12 week treatment February 2015
Blood tests normal
ElizabethFaraone@yahoo.com

Offline hepcondor

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Re: Harvoni Side effects
« Reply #1755 on: April 04, 2015, 12:52:04 pm »
Have not posted in awhile so I thought I would update since I started today on my 3rd and last bottle. Most importantly went from 18mil to 0 HepC on my 4 week labs WooHoo!!!!! Doctor said they hadn't seen that before.
Weeks 5 thru 7 were the hardest by far. Was dizzy and pretty much out of it mentally most of the time. Very painful joints and muscles but the tinnitus was the worst symptom for me.
But the last week 8th I am feeling good with only just a little head and muscle aches. WooHoo again. I say this hoping that all of you get into this last month like me and experience the same pleasant reduction in side effects. Going thru this will only make us stronger (and healthier) in the future and I pray that each of you clear out this crap like me and get thru it one day at a time.
Happy Easter

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1756 on: April 05, 2015, 02:43:24 am »
hepconder,

Thanks for you update but you've got me worried. I'm headed into my 2nd month of pills which means I'll be experiencing or might experience feeling worse, as you did.
I'm really glad for the heads up but I'm kind of worried at the same time.
I get bouts of energy but they fade. I had been feeling better but when I need to rest I've got to do it now. I will continue to read through posts to see if others have had a rough time as you have. I want to be prepared.

Michelle

Offline SunIsOut

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  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1757 on: April 05, 2015, 10:23:19 am »
Hi All, my energy levels have been great and I am 59 years of age.  I put 9 solid hours of yard work in yesterday digging my trenches for the landscape border, sanding the deck and using the chainsaw to prune trees.  I will be out today as well.  I did go to bed early and am sore as I have been all week from this but going strong. 

There does seem to be some variances from one to another so I wanted to offer a contrast here.  I am on bottle two and go in for 8 week labs a the end of the month. :)
« Last Edit: April 05, 2015, 10:25:32 am by SunIsOut »

Offline Karen1124

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Re: Harvoni Side effects
« Reply #1758 on: April 05, 2015, 10:28:41 am »
Hi Everyone!
Just wanted to wish everyone a Happy Easter! Have a great day!!
Life is Good!  Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline montemorton

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Re: Harvoni Side effects
« Reply #1759 on: April 05, 2015, 02:56:06 pm »
I'll try to be brief and I apologize in advance as this is not an area of giftedness.  In January of 2014 I took sofosbuvir, peg-intron and ribavirin for 12 weeks.  Initially, the results were good, (undetectable viral load).  Several weeks after the treatment, my blood work showed the hep c was back. 

From the beginning of that treatment, especially when trying to sleep, I experienced a sensation of my heart beating quite vigorously, which granted, is infinitely better than no heart beat.  I could also feel a strong pulse in my finger tips.  Four weeks after completing the 12 week treatment, I had my first episode of atrial fibrillation.  I was prescribed a beta blocker but was switched to sotalol, a combination beta blocker and anti-arrhythmic. 

In Oct. 2014 I had a cardiac ablation which helped and still take a small amount of sotalol (20mg. twice daily).  Without sotalol, I'm aware of feeling skipped beats, (premature atrial contractions) which feel uncomfortable and, at least for me, are anxiety evoking.

I've been very fortunate as my insurance allowed me to have another trial of a hep c med, this time Harvoni.  Today is my 10th day.  I began on a Friday and by Sunday felt an increase in the PAC's for which I've increased the amount of sotalol.  My questions and concerns are whether the increase in the PAC's are related to the interaction between Harvoni and sotalol. 

I spoke with the nurse practitioner in my G.I's office who informed me there had been a death with someone who was on Harvoni and the anti-arrhythmic Amiodarone.  And as far as she knew, sotalol was o.k..

So far, the increase in the PAC's continues.  Other than being scared senseless, I'm fine.  I would greatly appreciate ideas about the above and what, if anything, to explore.  Thank you so much.  Monte

Offline mario555

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Re: Harvoni Side effects
« Reply #1760 on: April 05, 2015, 05:15:13 pm »
Your rapid (skipped) heartbeat is definitely something outside the group expertise. The only thing we know for sure is that many of us with no previous heart problems have experienced an increase in blood pressure which causes ringing in the ears, etc... So, Harvoni does affect the heart or at least, the pressure. You should be extra careful with your
Medication. Good luck!
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1761 on: April 05, 2015, 10:29:00 pm »
hepconder,

Thanks for you update but you've got me worried. I'm headed into my 2nd month of pills which means I'll be experiencing or might experience feeling worse, as you did.
I'm really glad for the heads up but I'm kind of worried at the same time.
I get bouts of energy but they fade. I had been feeling better but when I need to rest I've got to do it now. I will continue to read through posts to see if others have had a rough time as you have. I want to be prepared.

Michelle

Not to be annoying but I'm doing something wrong because I'm not getting answers. Will someone please tell me if what hepconder said about weeks 5 through 7 were his worse? I'm not doing that great now and I'd like to know if that's what I have to look forward to.
This forum is my only point of reference unless I want to read reams of material on hep c and I don't want to do that.
Thank you...
Michelle

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1762 on: April 05, 2015, 11:19:01 pm »
Michelle

Unless hepconder checks in he hasn't seen your question it is a holiday weekend for many. I personally haven't had any issues with Harvoni been really tired from the Ribavirin but no problems with Harvoni.

Side effects  are an individual experience some have them some don't. Please don't try to talk yourself into having problems by expecting to have them.

That is how most of us learned by reading reams of material and hundreds of web pages to learn all we can in this fight for our lives

Good luck on treatment
« Last Edit: April 05, 2015, 11:20:56 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1763 on: April 06, 2015, 02:12:55 am »
Michelle

Unless hepconder checks in he hasn't seen your question it is a holiday weekend for many. I personally haven't had any issues with Harvoni been really tired from the Ribavirin but no problems with Harvoni.

Side effects  are an individual experience some have them some don't. Please don't try to talk yourself into having problems by expecting to have them.

That is how most of us learned by reading reams of material and hundreds of web pages to learn all we can in this fight for our lives

Good luck on treatment

Lynn, thank you for taking the time to explain this to me. I've not seen a doctor for over a month. Prior to that I've not seen or talked to anyone in the medical profession, about this disease. Nothing was explained to me. Nothing, except to take a pill every day for 3 months.

You're right about my not talking into having the same symptoms as others do. I'm not good at doing my own research. It just isn't good for me, so I"ll continue to lurk and try not to be bothersome.

Good luck all!!
Michelle

Offline Philadelphia

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Re: Harvoni Side effects
« Reply #1764 on: April 06, 2015, 02:48:11 am »
I am a bad researcher, Michelle. And by that I mean I am a really GOOD researcher. It's part of my job. I had a tendency to research so much, I'd dig into the dark spaces with the bad news.

I had to stop. It was terrifying me. I refused to consult Dr Google, except for a few very limited times.

You have to know what sort of person you are. I can't research without becoming overwhelmed. That's me. Other people are amazing troves of information.  That's them.

You need to do what is right for you.

And in regards to side effects,  something I learnt early on  - never borrow trouble.

Just wait and see how you do. Sure, being prepared is important, so talk to us about what's happening and people here will absolutely be able to help. But wait for your side effects to come to you - don't rush out to greet them. Because they might not come and you've wasted all that energy for nothing.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1765 on: April 06, 2015, 03:02:46 am »
I am a bad researcher, Michelle. And by that I mean I am a really GOOD researcher. It's part of my job. I had a tendency to research so much, I'd dig into the dark spaces with the bad news.

I had to stop. It was terrifying me. I refused to consult Dr Google, except for a few very limited times.

You have to know what sort of person you are. I can't research without becoming overwhelmed. That's me. Other people are amazing troves of information.  That's them.

You need to do what is right for you.

And in regards to side effects,  something I learnt early on  - never borrow trouble.

Just wait and see how you do. Sure, being prepared is important, so talk to us about what's happening and people here will absolutely be able to help. But wait for your side effects to come to you - don't rush out to greet them. Because they might not come and you've wasted all that energy for nothing.

Thank You!

You could not have told me all of this at a better time. Reading the op, last night, worried me and this is the only place I know to turn.

I have to live in a bit of oblivion when it comes to my health and research is not good for me. That's shown in how much I reacted to post last night. I was certain, and even checked my calendar to make sure I had the next couple of weeks to be, well sick-er, I guess.

I get now that no one's reactions are same. Or some might be but there isn't a list of feelings for weeks 1.2.or 3.

This just helps so much. I need people to talk with about this and I'm afraid its you in this forum.

Again, thank you both for taking the time to write on this holiday night.  I can go to bed assured, now.

Michelle

Offline Lynn K

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Re: Harvoni Side effects
« Reply #1766 on: April 06, 2015, 03:11:26 am »
Hi Michelle

No worrries if you have a question just ask and like Philadelphia said not all can handle the reading and if not familiar with medical terms it can make your head spin lol.

If I can ask are you taking Harvoni for 12 weeks is that correct? So I guess you are genotype 1 is that 1a or 1b? Has your doctor checked on the health of your liver do you have any liver damage? Have you ever treated before?

If you don't have liver damage, have never treated prior and are taking Harvoni your chances of a cure are excellent.

And while some have had some sides most report little to no side effects except maybe some mild headaches and some report having more energy so having a little trouble sleeping at night.

Good luck on treatment I am sure you will do great just like taking a vitamin for 12 weeks and you are done!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline elizabethfaraone

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Re: Harvoni Side effects
« Reply #1767 on: April 06, 2015, 08:47:21 am »
When we decide to take Harvoni (it is an individual decision), we are part of an experiment.  It cures the disease but we won't know of long term adverse effects until the data is compiled.  Fatigue is an adverse effect for most taking the medicine.  What, physiologically, is causing the fatigue?  We won't know until it is carefully examined.  I'm detached and happy to be a part of advancements made in the field of medicine.  If I am injured in the process, I'm OK with that.
« Last Edit: April 06, 2015, 08:54:13 am by elizabethfaraone »
Infected in 1987 in China when MD administered acupuncture with reused needle
Diagnosed 2001
Genotype 1a w/ Q80K polymorphism
Attempted treatment with Interferon/Ribavirin 2003 and stopped immediately
2014 fibroscan no fibrosis
2014 abdominal ultrasound normal
Found gastroenterologist to advocate for me upon Harvoni approval by FDA
Began treatment w/ Harvoni December 2014
Undetected at four weeks
Completed 12 week treatment February 2015
Blood tests normal
ElizabethFaraone@yahoo.com

Offline SilverDC

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Re: Harvoni Side effects
« Reply #1768 on: April 06, 2015, 11:25:27 am »
Hello All.

I’ve been monitoring this site since mid-December and this is my first post.  I’ve had HepC for 40 years and have had no ill effects.  Viral load at the beginning of treatment was 3.5 and liver was F0.  Started treatment January 2nd and ended March 26th.  Zero side effects.  Both February 13th and March 27th tests showed UNDETECTED.   Life is good and I’m thrilled and excited about my future.

Question for the Group.

All of my adult life, 40 years and I’m now 60, when I close my eyes and face the sunlight I’ve seen hundreds of little yellow translucent dots floating/moving around in my eyelids.  They have always been there… and now they are gone.  Not exactly sure when they went away, because I did not know to pay attention to them.  Has anyone else experienced the same thing?

Be well.

Offline mario555

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Re: Harvoni Side effects
« Reply #1769 on: April 06, 2015, 12:06:04 pm »
Silver DC. I have suffered ophthalmic headaches since I have tried interferon in 2000. I would see flashes in my eyes and would have to hide in the dark for 1 hour to have them disappear. I would have an episode once a month on average and it seemed to be related to my nutrition. Since I have started the treatment on November 20th (24 weeks), I have not had a single episode! I am really amazed at seeing how much of my overall health was related to this awful disease...
I am now at week 21 and can't wait to finish the treatment. I "feel" I'm cured but, I don't dare to stop! 24 little suckers left..
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline Keanu2015

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  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1770 on: April 06, 2015, 12:32:01 pm »
Good morning friends!

                  Day 46 for me, closing in on 7 weeks of 12! I am honored to be treating right here along with you fellow souls. As a group of 12 weekers, those who went before us (the Harvoni pioneers), are rapidly approaching the SVR 12 mark. I was thinking mid April? Anyway I"m excited to hear how they did overall! Philadelphia and Elizabeth those were some very powerful statements you made. Thank you and I couldn't agree more. Michelle you can find SO much if you go back through and read from the beginning of this thread. Many folks including myself have spoken about their side effects and their responses to them on weeks 1 one thru 3. There is so much good information there. As far as personal perspective: I have my own blanket view of what this drug means and is doing to me as Philadelphia mentioned. I feel that the disease that was inside me has already been killed by the drug, but that's me. I feel that the side effects I'm experiencing now are that of my body chemistry continuing to assimilate to the drug. Everyone is different. When Gilead put their guidelines together they didn't give the doctors much if any discretion to work with which is a good thing. When I had LYME disease in 2010. I pulled out the tick with its parts intact the day it got on my leg. Regular MD's thought 1000 MG in a single dose or up to 3 weeks of Doxycycline was a safe choice based on the type of tick. I dismissed that theory, started the 3 week course one prescribed and and went to see a specialist 60 miles away anyway. The "bulls-eye" appeared WHILE ON Doxy. He felt 8 weeks was absolutely necessary because of the risk for a life of torture. He also was fully prepared to rotate with another antibiotic because the spirochetes (specific lyme germs) in my bloodstream were such deviant little creatures. In his experience, (many Lyme cases) spirochetes were capable of survival by adapting to and or "hiding" from the drug. In my case with the drug constantly there in the environment they needed to live, they eventually lost the game. Therefore, having heard this from the horses mouth once before, I realize that the best thing possible for us is actually over-kill! If this thing is anything close to what Lyme was and we all know it's more incidious then absolutely. Hope everyone is doing well today. If you can't exercise, try to bounce a bit. Gotta move around- keep the lymph and circulatory systems flowing as vigorously as possible. Keep the heart working and drink a boat-load of water every day! SilverDC I saw floating squiggly particles at times, never any yellow though. I do know that the backs of my eyeballs (felt like muscles) were starting to become more sore everyday just prior to treatment. That is gone now. It went away by week 3 and 4. Mario and Silver I'm so glad you are doing better! I can't wait to be where you are! Hope everyone had a wonderful Easter weekend! ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1771 on: April 06, 2015, 06:34:13 pm »
Hi Michelle

No worrries if you have a question just ask and like Philadelphia said not all can handle the reading and if not familiar with medical terms it can make your head spin lol.

If I can ask are you taking Harvoni for 12 weeks is that correct? So I guess you are genotype 1 is that 1a or 1b? Has your doctor checked on the health of your liver do you have any liver damage? Have you ever treated before?

If you don't have liver damage, have never treated prior and are taking Harvoni your chances of a cure are excellent.

And while some have had some sides most report little to no side effects except maybe some mild headaches and some report having more energy so having a little trouble sleeping at night.

Good luck on treatment I am sure you will do great just like taking a vitamin for 12 weeks and you are done!

Lynn, I appreciate your understanding that this is not something I'm able to research.
I've been told Nothing! by the doctors. I've seen my GI doctor, who put me on Harvoni. I'd been ill since last summer, but nothing was discovered until a few months ago, when I met with the Harvoni doctor.

I know very little about my labs or what they mean. I do have or think I have cirrhosis-possibly extensive but I've had that for almost 30 years. Prior to this I had no input on my hep c. So, I'm lost here. Totally lost and uninformed.

After you and Philadelphia wrote me, I immediately felt better and not alone. I will do what Keanu wrote about my reading the other posts. That much I'm able to do.

Again, all support is appreciated and I wish us all only the best!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1772 on: April 06, 2015, 06:42:37 pm »
Hello All.

I’ve been monitoring this site since mid-December and this is my first post.  I’ve had HepC for 40 years and have had no ill effects.  Viral load at the beginning of treatment was 3.5 and liver was F0.  Started treatment January 2nd and ended March 26th.  Zero side effects.  Both February 13th and March 27th tests showed UNDETECTED.   Life is good and I’m thrilled and excited about my future.

Question for the Group.

All of my adult life, 40 years and I’m now 60, when I close my eyes and face the sunlight I’ve seen hundreds of little yellow translucent dots floating/moving around in my eyelids.  They have always been there… and now they are gone.  Not exactly sure when they went away, because I did not know to pay attention to them.  Has anyone else experienced the same thing?

Be well.

I'm unsure whether to post a possible answer. Obviously, I'm not a doctor but I can offer information that my ex husband had, what he called, floaties, when he shut his eyes but they would come and go. I'm starting to get black floaties, for lack of better word, and they will stay with me for months then just disappear but I hear that's fairly normal.

I hope you find what it is that's going on but from the tiny bit I know, I wouldn't be too worried.

Michelle

Offline Philadelphia

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Re: Harvoni Side effects
« Reply #1773 on: April 06, 2015, 06:47:52 pm »
The great benefit about reading posts here is that people here are thoughtful, aware of our frailties and have walked at least a few hundred miles in our shoes. Of course anything said here does not replace good medical advice, but we all know what it's like to walk your path. 
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1774 on: April 06, 2015, 07:27:09 pm »
The great benefit about reading posts here is that people here are thoughtful, aware of our frailties and have walked at least a few hundred miles in our shoes. Of course anything said here does not replace good medical advice, but we all know what it's like to walk your path.

And that's all I need. People who understand. I don't have anyone who has gone through hep c and I don't have anyone to talk to.

I'm pretty much tired, all the time - except for of course bedtime! Today, I was going to get up and work out but I was so nauseous I couldn't get out of bed until mid afternoon. But, up now. Not ready to work out..a little upper body is about all I can do today..but there is always tomorrow.

And, from what I'm reading the medical community is almost as new to Harvoni as we are. Ok, they do know more but I honestly was given NO instructions. I didn't want any stipulations, so I was fine with that. But, I was told to hydrate, which I do but since my liver is compromised and I have very low sodium levels, and the liquid goes right through me. All in all, despite my low low energy level, I'm still able to get out and about..not for long periods of time but long enough to get things done. Today, I'm not well enough to go out but I will be well enough tomorrow!


Offline Katie

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Re: Harvoni Side effects
« Reply #1775 on: April 06, 2015, 08:15:28 pm »
Hi Michelle,  Severe fatigue is a horrible thing to deal with and can lead to depression.  I was there prior to treatment and then I felt wonderful, almost immediately after starting on Harvoni.  Around week 9 & 10 I once again had horrible fatigue where I could barely do anything but then one day, I woke up feeling terrific again.  Who knows why.

One of the best things you can do for yourself is to get an understanding of this disease and this treatment.  It allows you to be pro active and the ability to ask informative questions when you do see your doctor.  I suggest you get copies of all of your blood work and any other tests from your doctor.  If you call, many doctor's offices will mail them out to you.  You may not understand them but it is easy to look on line or ask on this forum about what they mean and then you can compare the results from one test to another. It gives you some control and no understanding can cause undo stress.

Hydrating will make you feel better as it helps to flush out the toxins.  With Hep C, the liver does not purify the blood the way it should which causes, fatigue, insomnia, brain fog along with other things depending on your overall health.  On Harvoni, your liver is beginning to work again so in my mind it makes sense that during the treatment you might feel lousy sometimes, so when that happened I just kept telling myself the medicine is working and it is temporary.

Why is your sodium low?  This site explains the possible causes of low sodium.  If you don't understand why it is low it may be helpful to you and it is easy to understand. 
http://www.mayoclinic.org/diseases-conditions/hyponatremia/basics/causes/con-20031445

Another thing I suggest is to protect your liver by eating healthy, discuss any medications including over the counter and take as few as you can.  I stopped all supplements other than Vitamin D and my B complex (on occasion) as they aren't sure about interactions with supplements.  They do, however know, St John's Wart should never be taken with Harvoni and neither should antacids (within 4 hours).  I found eating several small meals throughout the day worked better for me than a large meal and actually started having my evening meal around 3:00 in the afternoon with just a salad, a soup or some other snack later on.  This was easy for me as I am retired and am home all day which isn't always possible for many.  I have remained on this schedule now that I have completed my 12 week treatment.

The last thing is exercise and that depends on your energy level, but the more you can do, the better you will feel.  When I had that bout of horrible fatigue, I made it a point to get outside and get some fresh air and just walk around the yard the best I could.  It always helped.  Fresh air is good for you.  Just sitting on the deck and watching and listening to the birds and my dog and cat always boosts my spirits too, and now with springtime, things are coming to life and I love that.

I think that's enough for today and I hope some of it helps.  We are all going through this and there are lots of individual variations, but listen to your body and give it what it needs.  It doesn't hurt to push it a little, but rest as you need to.  Short walk...sit and rest then another short walk.  Maybe that would work for you.

Good luck.  You aren't alone and you can ask anything here.  It is a wonderful supportive group.

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1776 on: April 06, 2015, 09:38:17 pm »
Hi Michelle,  Severe fatigue is a horrible thing to deal with and can lead to depression.  I was there prior to treatment and then I felt wonderful, almost immediately after starting on Harvoni.  Around week 9 & 10 I once again had horrible fatigue where I could barely do anything but then one day, I woke up feeling terrific again.  Who knows why.

One of the best things you can do for yourself is to get an understanding of this disease and this treatment.  It allows you to be pro active and the ability to ask informative questions when you do see your doctor.  I suggest you get copies of all of your blood work and any other tests from your doctor.  If you call, many doctor's offices will mail them out to you.  You may not understand them but it is easy to look on line or ask on this forum about what they mean and then you can compare the results from one test to another. It gives you some control and no understanding can cause undo stress.

Hydrating will make you feel better as it helps to flush out the toxins.  With Hep C, the liver does not purify the blood the way it should which causes, fatigue, insomnia, brain fog along with other things depending on your overall health.  On Harvoni, your liver is beginning to work again so in my mind it makes sense that during the treatment you might feel lousy sometimes, so when that happened I just kept telling myself the medicine is working and it is temporary.

Why is your sodium low?  This site explains the possible causes of low sodium.  If you don't understand why it is low it may be helpful to you and it is easy to understand. 
http://www.mayoclinic.org/diseases-conditions/hyponatremia/basics/causes/con-20031445

Another thing I suggest is to protect your liver by eating healthy, discuss any medications including over the counter and take as few as you can.  I stopped all supplements other than Vitamin D and my B complex (on occasion) as they aren't sure about interactions with supplements.  They do, however know, St John's Wart should never be taken with Harvoni and neither should antacids (within 4 hours).  I found eating several small meals throughout the day worked better for me than a large meal and actually started having my evening meal around 3:00 in the afternoon with just a salad, a soup or some other snack later on.  This was easy for me as I am retired and am home all day which isn't always possible for many.  I have remained on this schedule now that I have completed my 12 week treatment.

The last thing is exercise and that depends on your energy level, but the more you can do, the better you will feel.  When I had that bout of horrible fatigue, I made it a point to get outside and get some fresh air and just walk around the yard the best I could.  It always helped.  Fresh air is good for you.  Just sitting on the deck and watching and listening to the birds and my dog and cat always boosts my spirits too, and now with springtime, things are coming to life and I love that.

I think that's enough for today and I hope some of it helps.  We are all going through this and there are lots of individual variations, but listen to your body and give it what it needs.  It doesn't hurt to push it a little, but rest as you need to.  Short walk...sit and rest then another short walk.  Maybe that would work for you.

Good luck.  You aren't alone and you can ask anything here.  It is a wonderful supportive group.

Katie

Wow Katie, thank you. I love all that you've written here.

I do have my labs and my wonderful neighbor is a nurse and she reads them for me and when she's able she goes to the doctor with me. She knows the questions to ask and has a much better memory than I do.

Emotionally, I've done surprisingly well. I will do whatever it takes to avoid being down. I don't care what it takes - I will fight it!

I think I haven't made mention of how grateful I am to be taking this drug and yes, when I don't feel well, I know, I just know it's  because of the Harvoni working.

Ironically, this has been the hardest day I've had and I'm just finishing up round one. Will start my 29th pill on Thursday.

I have to drive myself to get my labs and well..do most everything on my own and I have to go out whether I feel well or not.

If I dwell or give too much energy to the disease then I'm prone to getting down.

Oh, and about my sodium level being in the 120somethings..my liver is damaged from drinking. When I quit, almost 30 years ago, immediately my sodium level was low and has been ever since. No doctor has ever said how to elevate it. In fact I've been told I cannot get my levels up to normal so I've given up on that but I will check out your link.

All the information you've posted here helps me immensely and as always-very much appreciated.

Offline kaemicha

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Re: Harvoni Side effects (memory loss)
« Reply #1777 on: April 06, 2015, 09:44:06 pm »
I just joined this forum in order to find out if anyone can offer insight based on experience with Harvoni side effects to help my family understand what is happening with my mom--specifically, sudden onset of memory loss. She has had Hepatitis C for many decades, is in her early 80s, and started Harvoni treatment in January. She has several other medical conditions for which she takes medication, including medicine to shrink a pituitary tumor.

In the last couple of weeks, toward the end of the Harvoni 12-week cycle, my mom experienced congestive heart failure and was put on oxygen. This past week, while her oxygen levels improved and she was able to stop the oxygen tank, she began to experience serious confusion and memory loss and symptoms that present like dementia. Testing revealed a kidney problem, so her doctor took her off the Harvoni with 6 pills remaining. The kidney problem has resolved itself, but my mom's memory has not returned. In addition to bloodwork, she has had an MRI, a spinal tap, and is going for an EEG this week. Doctors do not know the cause of the sudden memory loss as yet.

We are wondering if her sudden memory loss could be either a side effect of Harvoni, a side effect of the combination of Harvoni and one of the other medicines that she is taking, the result of a possible mistake in her dosage due to confusion on her part, or ???? If you have had or know of anyone who has had memory loss while taking Harvoni, please reply.

I am very new here but I can attest to the fact that my thinking gets muddled and my memory is so much worse, while I'm on this. I'm going to assume that I'll be able to maintain a train of thought when the medication is over. I'm not going to worry about the memory part. It really became noticable when I started on Harvoni, 26 days in.
Good luck to you and your mom!

Michelle

Offline Lynn K

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Re: Harvoni Side effects
« Reply #1778 on: April 06, 2015, 10:29:40 pm »
Hi Michelle

When you said "I do have or think I have cirrhosis-possibly extensive but I've had that for almost 30 years." why do you think that? Have you had a liver biopsy at so point or a fibrosure or fibroscan?.

Many have had hep c for very long amounts of time with little liver damage.

I had hep c for likely 30 years before I was diagnosed with cirrhosis and I was monitored closely for 20 years before I was diagnosed with cirrhosis with liver biopsies every 5 years each one with more and more damage.

Unless you have been tested why would you think you have cirrhosis?
« Last Edit: April 06, 2015, 10:52:35 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1779 on: April 07, 2015, 02:14:10 am »
Hi Michelle

When you said "I do have or think I have cirrhosis-possibly extensive but I've had that for almost 30 years." why do you think that? Have you had a liver biopsy at so point or a fibrosure or fibroscan?.

Many have had hep c for very long amounts of time with little liver damage.

I had hep c for likely 30 years before I was diagnosed with cirrhosis and I was monitored closely for 20 years before I was diagnosed with cirrhosis with liver biopsies every 5 years each one with more and more damage.

Unless you have been tested why would you think you have cirrhosis?

Lynn,

I do have cirrhosis. At least that's what the biopsy's showed and I had a damaged liver before I contacted hep c.  I've had 2 biopsy's and both showed damage..it's just something I've never quite believed but it's true. I damaged it.

About a decade later, when I met my ex husband, he's the one who gave me hep c. He and other ex had been needle users and I got the .. is it a disease, hep c. I found that out when I had an on the job injury and had to get blood tests. I was shocked. I've never done hard drugs or needles of any kind.

That's all my brain knows for now...except I don't know what  fibrosure or fibroscan..is or are!

Michelle

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1780 on: April 07, 2015, 02:23:26 am »
I'd like to add that I'm not thinking real clearly and I forget to include more details. I'm sorry for that. I'm almost caught up in my history and will condense soon.

Now, to bother you further...I was planning to go to Europe, this time next month, for 2 weeks. Any chance I would have the energy/stamina to do that? Just your opinion...and I think I know the answer.  :-\

Offline Lynn K

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Re: Harvoni Side effects
« Reply #1781 on: April 07, 2015, 02:51:42 am »
Hi

So you were told you were F4? F4 is cirrhosis there is also F0, F1, F2, and F3 each is more and higher levels of scarring (fibrosis).

Fibroscan is testing available in some liver specialists offices it is similar to an ultrasound but kinda thumps your side then determines how hard you liver is. A fibro sure is a kind of blood test looking at specific markers than indicate cirrhosis.

Hepatitis c is a virus a damaged liver is called liver disease.

Do you get abdominal ultrasounds every six months along with an AFP blood test to monitor for early indications of liver cancer?

Have you had an upper endoscopy to check for esophageal varicies? My doctor had me get an upper endoscopy and a pneumonia vaccine shot right away after I was diagnosed with cirrhosis.

Travel well that is up to you. I went to Italy for a week in mid March while treating with Harvoni and Ribavirin. I have developed anemia from the Ribavirin but I went. I am often out of breath from the anemia but went on a walking tour of the Vatican. But I am kind of a tough cookie.

So just depends on how you feel
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline kaemicha

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Re: Harvoni Side effects
« Reply #1782 on: April 07, 2015, 05:14:33 pm »
Hi

So you were told you were F4? F4 is cirrhosis there is also F0, F1, F2, and F3 each is more and higher levels of scarring (fibrosis).

Fibroscan is testing available in some liver specialists offices it is similar to an ultrasound but kinda thumps your side then determines how hard you liver is. A fibro sure is a kind of blood test looking at specific markers than indicate cirrhosis.

Hepatitis c is a virus a damaged liver is called liver disease.

Do you get abdominal ultrasounds every six months along with an AFP blood test to monitor for early indications of liver cancer?

Have you had an upper endoscopy to check for esophageal varicies? My doctor had me get an upper endoscopy and a pneumonia vaccine shot right away after I was diagnosed with cirrhosis.

Travel well that is up to you. I went to Italy for a week in mid March while treating with Harvoni and Ribavirin. I have developed anemia from the Ribavirin but I went. I am often out of breath from the anemia but went on a walking tour of the Vatican. But I am kind of a tough cookie.

So just depends on how you feel

I have had, until recently, had NO input about my liver except that it's 80% irreparable damage but functins ok, for someone that has the this extensive kind of damage.  I'm totally in the dark about all the acronyms you put in your post...(e F4? F4 is cirrhosis there is also F0, F1, F2, and F3 )..mean nothing to me.

I was treated poorly since I was an alcoholic and in the 90's hospitals and doctors didn't like that and told me I could never quit. So I quit! And, they still didn't bother to do much since I was the cause of my own liver damage. That's pretty much all I know.

The GI doctor, I have now, wants to do the endoscopes, I don't want the lower one, but he'll only do them at  the same time so I guess..after I finish the pills.

And, Thanks! for the input on my possible trip. My friend is going to Paris and I am going to try and join her.
That makes me happy.

Michelle

Offline Lynn K

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Re: Harvoni Side effects
« Reply #1783 on: April 07, 2015, 06:06:38 pm »
ok here is some info about staging of liver damage.

http://www.myliverexam.com/en/liver-fibrosis-and-steatosis.html

Fibrosis


Any chronic attack on the liver will cause inflammation, which then leads to the formation of fibrous scar tissue in the liver, creating hepatic fibrosis. This fibrosis is therefore a scarring process that will replace damaged liver cells. The extent of this fibrosis can vary, and it is described in several stages. A normal liver is at a stage between F0 and F1. Stage F2 denotes light fibrosis, and F3 is severe fibrosis. 'Cirrhosis' is defined from stage F4, when scar tissue exists throughout the liver.

Hope that helps.

I have never been told anything like 80% of anything I was told I had F4 which means cirrhosis in January 2008. Thus far my cirrhosis is considered compensated as I have a MELD score of 8

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

and child pugh score "A"

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

You should ask your doctor for your MELD score and Child Pugh score.

You said you had a biopsy the report should say the fibrosis score of either F1 F2 F3 or F4 and also an inflammation score. You should ask for copies of your records they are your tests that way you will know more about what is being discussed here.

If you have cirrhosis you should be seeing a hepatologist associated with a liver transplant center if possible they are best equipped to work with patients with this level of liver damage.

You need to do the endoscopies to make sure you don't have a risk of bleeding from enlarged blood vessels. The worst thing about the lower is the prep other than that they are about the same. I have no memory of either of the procedures. I guess I have had 3 lower endoscopies and about 10 upper ones because I had grade 3 esophageal varicies discovered on my 3rd endoscopy abd had to go in 4 times for repeted bandings to make sure we got all the enlarged blood vessels. Now I get one annually.

Go to Paris! yes go life life! there is no better day than today for who knows what tomorrow brings.

Congratulations on you many years of sobriety keep up the great work!
« Last Edit: April 07, 2015, 06:14:19 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline kaemicha

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  • Posts: 43
Re: Harvoni Side effects
« Reply #1784 on: April 07, 2015, 09:40:14 pm »
ok here is some info about staging of liver damage.

http://www.myliverexam.com/en/liver-fibrosis-and-steatosis.html

Fibrosis


Any chronic attack on the liver will cause inflammation, which then leads to the formation of fibrous scar tissue in the liver, creating hepatic fibrosis. This fibrosis is therefore a scarring process that will replace damaged liver cells. The extent of this fibrosis can vary, and it is described in several stages. A normal liver is at a stage between F0 and F1. Stage F2 denotes light fibrosis, and F3 is severe fibrosis. 'Cirrhosis' is defined from stage F4, when scar tissue exists throughout the liver.

Hope that helps.

I have never been told anything like 80% of anything I was told I had F4 which means cirrhosis in January 2008. Thus far my cirrhosis is considered compensated as I have a MELD score of 8

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

and child pugh score "A"

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

You should ask your doctor for your MELD score and Child Pugh score.

You said you had a biopsy the report should say the fibrosis score of either F1 F2 F3 or F4 and also an inflammation score. You should ask for copies of your records they are your tests that way you will know more about what is being discussed here.

If you have cirrhosis you should be seeing a hepatologist associated with a liver transplant center if possible they are best equipped to work with patients with this level of liver damage.

You need to do the endoscopies to make sure you don't have a risk of bleeding from enlarged blood vessels. The worst thing about the lower is the prep other than that they are about the same. I have no memory of either of the procedures. I guess I have had 3 lower endoscopies and about 10 upper ones because I had grade 3 esophageal varicies discovered on my 3rd endoscopy abd had to go in 4 times for repeted bandings to make sure we got all the enlarged blood vessels. Now I get one annually.

Go to Paris! yes go life life! there is no better day than today for who knows what tomorrow brings.

Congratulations on you many years of sobriety keep up the great work!

You all are saving my sanity. I had the best day, today and I really think it's because I can talk to you all here.

Lynn, I cannot begin to thank you enough for all the important information I might need. I've printed it out. This week will be bloodwork then next week I see the doctor and I'll take what you've written here, with me and ask him line by line. Of course I'll forget some of it but - oh well.

I have another friend who was diagnosed with 80% irreparable liver damage and we thought that was odd..both of us having the same percentage of damage. I don't know if that's what the doctors tell all drinkers..former drinkers.

I know the consequences of my actions might not be all that good but it's not going to stop me. You've helped me regain my strength and I'll fight and do what I have to do. Just makes me feel good-for now-to say I'm not going to do it but bottom line is that I'm really comfortable with my GI doctor. He is the one who said those tests are next. I don't have anyone to take me and pick me up but I'll work on it.

You've helped me accept more than I expect to and as always thanks to you all.

Michelle

Offline MEG

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Re: Harvoni Side effects
« Reply #1785 on: April 08, 2015, 01:12:25 am »
Hi all---newcomers and old friends.

I also was not getting notifications...hmm.

Unfortunately, I have been so sick. The fatigue has been severe and layered on top was a rare side effect from the Levaquin that I was placed on about 3 weeks ago for a stubborn sinusitis----a pretty severe case of tendonitis of my shoulders. Before they'd pin it on the Levaquin, I've been back and forth to the doctor, spine specialist to assure it wasn't nerve compression from my cervial neck vertebrae.

Just the back and forth to my pcp, then specialist has been more than I could bare---at times.

The good news is that I remain undetectable at 8 weeks on-treatment.

Today I completed my 10th week with 2 more to go.

My doc's(pcp and hepatologist) think the severe fatigue(and accompanying muscle aches, joint aches) are the Harvoni---I pray that they are correct----some of you will remember that I'd been feeling lousy from colds/sinusitis since October.....my fear, actually of late, terror, has been that I was having a Chronic Fatigue Syndrome type relapse. I spoke about my symptoms mimicking the latter upthread.

That although I was hcv negative now, that my fatigue, all these years, was a reaction that happens to folks with CFS---where a virus turns on their immune system and doesn't know how to turn itself off. Time will tell.....

My tinnitus is much improved this week---the only side effect that I can with certainly attribute to the Harvoni(after the first couple of weeks of nausea/headaches). It was never bothersome but noticeable.  Today I happened to notice that it's gone ;-)

Otherwise, I'm eating and drinking well---although, over Easter i was so sick, sleeping so much that I developed a Harvoni headache because I was unable to drink enough fluids.

I did anyway indulge in some dark chocolate and a cupcake  on Easter---and I payed for it. My fatigue yesterday was horrible. I felt hungover from the sugar and wheat(I've been completely sugar-fee, gluten-free throughout treatment)...

I will now begin counting down from day 14 to day Zero! April 21 will be my last dose...

For any newbies---it truly is worth it---despite my having had this profound fatigue, sinusitis, and now tendonitis,  and even the weight gain(!), loss of muscle tone due to the inability to exercise----to be able to say that I am hcv negative after all these years gives me much strength and hope. And I keep focused on how this tough period is but another pothole on the road and with Spring here, all those roads get fixed ;-)

I wish for all of you continued healing and strength.......can't thank you enough for being here and sharing so generously.
« Last Edit: April 08, 2015, 01:14:59 am by MEG »
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline MEG

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  • Posts: 304
Re: Harvoni Side effects
« Reply #1786 on: April 08, 2015, 01:20:02 am »
@Katie and Paul

Rooting for undetectable for you!!!

@Islandgirl I saw the thread where you were discussing having a biopsy to see if your liver is getting better...Hmm....it takes a while to see those changes....I wouldn't be in a rush and I do wonder how and how often doctors will be assessing the livers of those with fibrosis/cirrhosis?

Being SVR is truly the most important aspect, imo---esp if one is not engaging in liver-stressing lifestyle habits...

Island girl, how is your energy now that you've been off therapy for several weeks? I'd love to know...Hugs my dears!
« Last Edit: April 08, 2015, 05:34:20 pm by MEG »
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Bituman

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Re: Harvoni Side effects
« Reply #1787 on: April 08, 2015, 09:33:58 pm »

I will now begin counting down from day 14 to day Zero! April 21 will be my last dose...


Another one of our group sprinting for the finish!  Meg you are currently the Mark Cavendish of the Harvoni crowd! 

Keep going...

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1788 on: April 08, 2015, 10:36:00 pm »
@Bob

Quote
Another one of our group sprinting for the finish!  Meg you are currently the Mark Cavendish of the Harvoni crowd!

I wear this with a badge of honor. ;-) All the best Bob...At which week are you now?
Meg. 
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Bituman

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  • Posts: 157
Re: Harvoni Side effects
« Reply #1789 on: April 09, 2015, 12:04:29 am »
Tomorrow evening at 9 PM I will start week 10.  Nine down, 3 to go.  Time is really passing quickly. 

Tonight I signed up for the "Liver Walk" a week from Saturday in Phoenix.  It's organized by the American Liver Foundation.  I'm planning on riding my bike to the event and then either doing the 1k walk or 5k run.  Not sure my knee is up for 5k.    Trying to figure out a sign or tee shirt that advertises HCV treatment.  Maybe "Harvoni Warrior?"  Gilead ought to like that since they are a major sponsor. 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side effects
« Reply #1790 on: April 09, 2015, 02:21:04 am »
I like the t shirt idea Bob good luck and have fun

Meg I am pulling up behind you folks with 26 days to go of my 24 week treatment woo whoo sprinting for the finish line!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline texasgal

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  • Posts: 6
Re: Harvoni Side effects
« Reply #1791 on: April 09, 2015, 09:03:42 am »
Hello
I'm happy to report NO detection of virus after four weeks of Harvoni. Blood results are stellar with everything normal except slightly high is Lymphocytes. Has anyone experienced the same?

Also my Iron is also high which is strange but maybe something I ate that week? 


Thanks
GHC

Offline texasgal

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Re: Harvoni Side effects
« Reply #1792 on: April 09, 2015, 09:19:15 am »
Hey Warriors, Have 22 more days on Harvoni. I found out my Lymphocytes have jumped from 1132 - 4180. Does anyone know why. My Primary is baffled on this because Harvoni is new & there's not much info on it. I read it has something to do with white blood cells. My Neurologist said it's a minor thing don't worry, but he doesn't know anything about Harvoni & what it does. So far my ALT is 13 & AST is 18. Won't get VL till May. Forget the GI office they never call me back.

Offline hepcondor

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  • Posts: 10
Re: Harvoni Side effects
« Reply #1793 on: April 09, 2015, 11:55:33 am »
Hi Michele,

Sorry for the delay and want to say that I am very sorry if I worried you. Yes weeks 5 thru 7 were the hardest for me but as you see from everyone on here the sysmptoms and circumstances for each individual are different.
I am in sales and having to look at people in the eyes and carry on any type of long term conversation when your head and body hurts is very hard. I would get dizzy and actually start to get a slight panic attack right in front of them. Almost ran out of the room once...LOL But I was a typical stubborn man and didn't tell anyone at work either. I finally told one person so I could cut down to 4 days a week at work and that helped.
22 pills left and the last 2 days I have been working in the yard and yesterday I hit the heavy bag for the first time in months. I know my body is going to be much stronger in just another month and then I am going to get in great shape.
Again I apologize for worrying you. I have to say also that going thru several days in a row of straight pain is not a good idea. That's what gets you depressed and anxious. I went to Colorado and got some cookies and chew one every three days or so. It makes me feel better and it kind of resets the system. I know some don't agree with polluting your body like that but the doctor also told me not to take Advil because of the damage to your liver. So I gave it up weeks 5 thru 7 even though I have been taking it for 15 years because it helps my back. As soon as I started taking it again my muscle aches got much better.
Meg you and I sound like we are on the same track and pretty much with the same effects. The tinnitus is crazy isn't it and very difficult to manage but a big Congrats to you and everyone that are getting close to finishing and clean blood!!  WooHoo!!!
« Last Edit: April 09, 2015, 12:00:56 pm by hepcondor »

Offline Karen1124

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  • Posts: 76
Re: Harvoni Side effects
« Reply #1794 on: April 10, 2015, 08:05:48 am »
Hi Everyone,
Got my end of treatment blood work back yesterday it is less than 15 VL they had me repeat blood work yesterday! What next? Life is
Good!! Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Joseph80

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  • Posts: 2
Re: Harvoni Side effects
« Reply #1795 on: April 10, 2015, 09:39:26 am »
I just started my harvoni treatments, I was wandering I take  benadryl for itching and tramadol for a neck surgery I had can I keep taking these meds while on the treatment or should I stop I can find anything that tells me it's okay to take them or not take them need some help hear

Offline Davidlm1

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #1796 on: April 10, 2015, 11:05:45 am »
Hi folks,
Well, got my blood drawn for my first result this morning.  Hoping to know how things are looking on Monday.  The Harvoni has continued working kind of hard on me with side effects.  Now into the phase of having some blurred vision.  Distracting but can still function OK.  I sit at a computer reading clinical information all day so that doesn't help with the vision but ... Still having nausea issues.  But still losing some weight which is a good thing.  Not crazy loss but some.  Am getting these really intense hunger pains that are literally getting me very nauseous.  Wondering what the Harvoni is doing to the digestive track?  I have been one to not have a huge appetite and get full easily but am finding that is really changing now.  I can eat but then still feel hungry when I get those hunger attacks.  Wondering if others are having this as well.  Needing to sign off for now but will report back on my results.  Keeping fingers crossed!  Hope everyone has a great rest of the day.  David

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1797 on: April 10, 2015, 01:27:48 pm »
Hi Everyone,
Got my end of treatment blood work back yesterday it is less than 15 VL they had me repeat blood work yesterday! What next? Life is
Good!! Karen

Hi Karen,  I was disappointed with my EOT test at <12 IU/mL on Feb 25th then I saw a study where those detected with a viral load less than what could be counted, cleared the virus.  The info is listed on the research forum :  http://forums.hepmag.com/index.php?topic=2383.0.

I just wanted to let you know you aren't alone as there are a couple others with the same results and you shouldn't panic.  I go in for my next blood work again on the 20th so will post my results at that time.  Hopefully the little buggers haven't started to replicate but it is just a waiting game at this time.  Be sure to let us know how your 2nd test came out.

Good luck to you and hoping we all get rid of this alien parasite once and for all!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1798 on: April 10, 2015, 01:36:52 pm »
Joseph:  Welcome!  I would check with your doctor or call Gilead on the meds you are taking.  I think if you can go without, that is the best practice while on treatment, as you want to limit anything that may give your liver additional work.

David: Sorry to hear about the blurred vision and digestive issues.  I know I had a real sweet tooth while on treatment and found I did better if I ate smaller portions throughout the day.  I would break the meals up eating a vegetable or salad and in an hour or two have some protein.  I felt better doing that than trying to digest a regular meal at one time.  Hope you improve and your test comes back with good results.  What week are you at?

Take care and Blessings to both of you!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Davidlm1

  • Member
  • Posts: 8
Re: Harvoni Side effects
« Reply #1799 on: April 10, 2015, 04:11:44 pm »
Hi Katie,
Thanks for the suggestion about breaking the meals up.  Worth trying, for sure.  I've just started the infamous week 5.  Having had side effects pretty much daily up to this point I'm hoping to go the opposite way here and not have any.  But as I've said, the end is worth it if I can wind up free of this nasty disease!  Having now started developing cirrhosis, it is most definitely time for it to go.  Even more so as I don't drink or do other things that will result in cirrhosis.  Time for it to go.  Thanks and have a great rest of the day.  David

 


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