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Author Topic: Day 2 Harvoni + Ribavirin  (Read 109658 times)

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Offline ricpark

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  • Posts: 87
Day 2 Harvoni + Ribavirin
« on: May 05, 2015, 10:11:03 am »
Been waiting for this day for years, 12 wks treatment on day 2, so far a little fatigue.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Day 2 Harvoni + Ribavirin
« Reply #1 on: May 05, 2015, 10:17:28 am »
All the very best!
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 KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #2 on: May 08, 2015, 09:12:21 pm »
Good luck ricpark! I'm right with you. Started 12-weeks Harvoni+Riba on May 5 - 1 day after you. Am feeling optimistic for both of us, and for everyone else doing this.

Kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #3 on: May 09, 2015, 06:38:19 am »
Good luck to you Kim, so far a little fatigue, I'm drinking alot of water. 11 wks and 1 day to go.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline ricpark

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  • Posts: 87
Re: Day 2 Harvoni + Ribavirin
« Reply #4 on: May 13, 2015, 09:15:09 pm »
Day 10, fatigue is better ( had fatigue before from chemo therapy ), no headaches (didn't have them before, you need brains to have headaches, it what my wife tells me)
So first 2 days fatigue with heavy legs and a little brain fog. Only mild fatigue currently.

Kim how are you doing?
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #5 on: May 13, 2015, 09:51:14 pm »
Hi Rich. Thanks for asking. I am on Day 9 and starting to get a few sides in my second week. This morning when I got up, every muscle was trembling from head to toe (a weakness/muscle fatigue thing like when you are getting flu or when you have worked out really hard on weights pushing certain muscles beyond their limit). I thought my legs would not support me as I walked to the kitchen. I took my Harvoni+Riba, and an hour later the trembling & muscle fatigue was gone and I was normal.

A few days ago I was mowing my lawn in the sun and wearing shorts. My thighs (but no other exposed skin) developed bright red dots all over them. These disappeared an hour later after I came inside. My skin was not itchy, just looked weird. Riba Rash, I assume.

I have developed a dry cough and tickle in throat. Have heard others here mention the Harvoni Cough. Only happens occasionally for me. Doesn't produce coughing fits.

On the up side, Harvoni seems to give me an energy boost that kicks in about an hour after I take it and last for maybe four hours. If I use that time wisely, I can really get a lot done! But then a have an energy slump after, need to take a nap for 30-60 min. But am fine after nap.

So really, nothing too problematic so far.

ps. Your wife is funny! ;)

kim
« Last Edit: May 13, 2015, 09:53:55 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #6 on: May 14, 2015, 07:12:42 pm »
Day 10 has been a near perfect day. All my sides so far since commencing have been minor and short-lived. No persistent or difficult sides. I puffed a bit on a flat, level walk this afternoon. Am enjoying the morning boost I get from the Harvoni. :)

Best to you Rich,
kim

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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  • Posts: 87
Re: Day 2 Harvoni + Ribavirin
« Reply #7 on: May 15, 2015, 05:16:32 pm »
Bad lower leg, foot and toe cramps last night did not get much sleep. Extreme fatigue, no sleep plus drugs equals     

                                                                    sorry fell asleep (just joking)

PS multi vitamin, magnesium, and a banana every day plus water, water, water. I had cramps before treatment, worse during Chemo. Neuropathy in my legs (tingle like they are asleep from Chemo). But I'm going to get thru this and keep my sense of humor.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #8 on: May 15, 2015, 05:49:02 pm »
But I'm going to get thru this and keep my sense of humor.

That's the spirit, Rich! Hang in there. The goal of being HCV-free makes it all worth it.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #9 on: May 16, 2015, 12:07:32 am »
It does seem to be a bit of a roller coaster - at least for me. I couldn't sleep last night at all and had repeated foot cramps in bed. Good energy all day (surprisingly)… until a few moments ago. Big crash.

The one persistent thing that has developed for me is a dry cough. Minor so far, but there every day since Day 5. Am now finishing Day 11.

Making eggplant, mushroom, artichoke heart pasta sauce for din dins tonight. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline dennyhil

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  • To change the perception, first change the reality
Re: Day 2 Harvoni + Ribavirin
« Reply #10 on: May 16, 2015, 05:06:59 am »
Hi Folks,

I started Harvoni on May 5th as well...  Compared to the interferon / ribaviron treatment I went thru in 06-07, this has been a walk in the park.  I too, seem to get an uplift in energy after taking it, that seems to last about 6 hours, then I crash hard.  I'm taking the doses exactly as prescribed, so the biggest side effect for me is sleep management. Of course, if I don't sleep well, this will exacerbate the disorientation / confusion side effects, which for me, is minimal IF I'm able to sleep.

I'm fortunate in that my employer provides me with the understanding and latitude to take it easy on a couple of the tougher days when I couldn't sleep.  I'm doubly fortunate that this employer also from provides me with incredible insurance. My first month supply cost me a co-pay of $15.00.

My wish is that my fellow stricken human beings could be as fortunate. This virus doesn't care whether you have money or not, it just wants to slowly kill us.  I wish we could find a way to get this drug in the hands of everybody that needs it, my brother being one of them. Here's to the miracle of modern medicine..  I can do this! 
Chronic - 30 yrs
Genotype 1
cirrhosis (stage 4)
Interferon/Ribaviron responder (06)
Hep C Relapse (08)
Kidney cancer (2010) cancer free now
Alcohol free for 19 yrs

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #11 on: May 16, 2015, 09:06:04 am »
Thanks
Today seems to be back to normal after yesterdays extreme crash, got some sleep. Day 13 and counting.

rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #12 on: May 16, 2015, 02:33:10 pm »
I will say that my insomnia problems (except for night before last) have disappeared since I began taking second dose of ribavirin at 5 pm instead of later, as I had initially been doing. My trial nurse who sees me each week advised me to move it up to 5 pm, said that was no problem at all, said it doesn't really matter when we take our 2nd dose of Riba in the day, Riba is so long-lived in the body that we can group our 2 daily doses more closely together if we need to.

I take my morning Harvoni+Riba at 9 am with a small amount of food (what the nurse recommended).

best of luck to all on this path!
kim :)

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #13 on: May 16, 2015, 04:29:06 pm »
So far  day 13 seems normal just a little fatigue. Last night with the crash I also had a low fever and nausea plus night sweat, first time.

rich

PS take Harvoni at 5 am fasting with Omeprazole 20 mg, wait 1 hour have coffee then bowl of raisin bran with a banana and the ribavirin.  Second dose of ribavirin at dinner around 6 pm.
« Last Edit: May 16, 2015, 04:33:23 pm by ricpark »
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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  • Believe in yourself
Re: Day 2 Harvoni + Ribavirin
« Reply #14 on: May 18, 2015, 01:36:26 pm »
So far  day 13 seems normal just a little fatigue. Last night with the crash I also had a low fever and nausea plus night sweat, first time.

I too have begun having night sweats. Began on Day 10 in my case. I am now on Day 14 (of Harvoni+Riba). While I've had a little of this and a little of that in terms of sides since the beginning, I can't actually say it has disrupted my life in any way. Most of the time I wouldn't even know I am on drugs or that anything is happening in my body. So far it has been an easier ride than I was expecting. (Am knocking on wood very vigorously right now so my last words don't jinx my good fortune.)

How are you doing Rich?

best,
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #15 on: May 18, 2015, 05:31:10 pm »
Kim glad you are doing OK, so am I, other than the big crash on day 13 none of those symptoms have come back. I still have cramps in my legs, feet, toes interrupting my sleep.

best
Rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline ricpark

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  • Posts: 87
Re: Day 2 Harvoni + Ribavirin
« Reply #16 on: May 20, 2015, 10:16:46 am »
Doctor's office called my May 18 blood work showed slightly anemic. Was taking 600mg ribavirin (3 200mg caps) twice a day, told to drop 1 and take only 400mg twice a day. And to retest blood next Monday the 25th.

How much ribavirin are others taking with havoni? And any body had to drop back?

Ps started to change my diet a little.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #17 on: May 20, 2015, 01:35:57 pm »
Hi Rich. I am taking 5 ribavirin daily (1,000 mg). I weigh 125 lbs, and the dosage is keyed to body weight.

My hemoglobin & red blood cells have gone down a tiny bit in first week (that is all I have lab results for so far). They will probably go down further. I think doctors have no choice but to dose-reduce the ribavirin if your hemoglobin drops below a certain number.

The incredible good news is that in just the first 7 days my viral load went from 9 million at start to just 130 at end of Week 1 !! And my liver enzymes were NORMAL for the first time in the 20 years I have been monitoring them, since being diagnosed in 1995. I know others are getting results like this too. But I was still astounded to see how quickly these drugs do their thang.

Side effects are still minor - night sweats, slight shortness of breath, and a dry cough. (Nurse says cough is common with ribavirin).

I am having a problem with appetitite suppression. Am losing weight (and I don't have any weight to lose) because a lot of foods don't appeal to me. I just can't eath them. Pasta for example. And that used to be the way I would put weight back on when I needed to. Every day am searching for things I can eat.

Rich, in what ways have you changed your diet?

Best of luck! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #18 on: May 20, 2015, 05:10:17 pm »
Riba from 1200mg to 800mg. Use to avoid iron (read somewhere hep c love's iron) so I'm increasing green veggies, meat, eggs, fruits. Don't know if its iron or B vitamins that are low, waiting for my labs to be posted by Doctor. I take a multi vitamin and magnesium sup. Magnesium can block iron absorption, so I'm cutting back on it.
rich


From Mayo Clinic

Many types of anemia can't be prevented. However, you can help avoid iron deficiency anemia and vitamin deficiency anemias by choosing a diet that includes a variety of vitamins and nutrients, including:

    Iron. Iron-rich foods include beef and other meats, beans, lentils, iron-fortified cereals, dark green leafy vegetables, and dried fruit.
    Folate. This nutrient, and its synthetic form folic acid, can be found in citrus fruits and juices, bananas, dark green leafy vegetables, legumes, and fortified breads, cereals and pasta.
    Vitamin B-12. This vitamin is found naturally in meat and dairy products. It's also added to some cereals and soy products, such as soy milk.
    Vitamin C. Foods containing vitamin C — such as citrus fruits, melons and berries — help increase iron absorption.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline ricpark

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  • Posts: 87
Re: Day 2 Harvoni + Ribavirin
« Reply #19 on: May 20, 2015, 06:31:54 pm »
Found info on ribavirin anemia, diet has no effect.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_anemia.pdf

Treatment
There are two approaches for treating
hemolytic anemia: ribavirin dose reduction
and use of a growth factor hormone
(erythropoietin) to promote red blood cell
production. (It should be noted that HCV
treatment-induced hemolytic anemia cannot
be treated by eating iron rich foods or taking
iron supplements.)
In general, ribavirin dose reduction or
the use of red blood cell growth factors
are recommended when the hemoglobin
level goes below 10 g/dL or if there is a
significant drop in hemoglobin levels over
a short period of time.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #20 on: May 20, 2015, 07:08:36 pm »
Good work, Rich. thanks!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline saydey

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  • Posts: 11
Re: Day 2 Harvoni + Ribavirin
« Reply #21 on: May 20, 2015, 07:15:59 pm »
I'm in the middle of week 6 on Harvoni and ribavirin.   I've had so many side effects,  and found out week 3 that several are due to severe anemia!  Breathlessness, hair loss :(, digestive issues, exhaustion and more from anemia caused by Ribavirin!   Reduced dose from 1000 to 600 gave some improvement.  Next stop, Procrit. So scared.
The anemia is NOT the type caused by lack of iron, it's another type...who knew? Did I mention forgetful?   (Ed: it's hemolytic anemia)  Today is a rough one, suffering from some incredible stabbing pains in many areas all over my body. Nurse says pain is not a side effect of this tx, wants me in office tomorrow to see what's up with this.
Not giving up,  ever, but it's been rough.
Started Harvoni & Ribavirin 4/11/15. 
Hep C 70s or 80s,  Diagnosed in about 2005.
Cirrhosis diagnosed 2011. Decompensated as of 5/2015
Gen 1 viral load before starting tx  2,900,000.
4 weeks VL <15 still detected
8 weeks VL <15 UNdetected :)
Hopeful EOT  July 4, 2015!
Added 4 more weeks Harvoni & Riba 800mg, Not.
Insurance declined payment beyond 12 weeks.
Still undetected at 1 week after EOT, yay!

Offline saydey

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  • Posts: 11
Re: Day 2 Harvoni + Ribavirin
« Reply #22 on: May 20, 2015, 07:21:36 pm »
Thanks ricpark, for that great info on anemia!
Started Harvoni & Ribavirin 4/11/15. 
Hep C 70s or 80s,  Diagnosed in about 2005.
Cirrhosis diagnosed 2011. Decompensated as of 5/2015
Gen 1 viral load before starting tx  2,900,000.
4 weeks VL <15 still detected
8 weeks VL <15 UNdetected :)
Hopeful EOT  July 4, 2015!
Added 4 more weeks Harvoni & Riba 800mg, Not.
Insurance declined payment beyond 12 weeks.
Still undetected at 1 week after EOT, yay!

Offline ricpark

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  • Posts: 87
Re: Day 2 Harvoni + Ribavirin
« Reply #23 on: May 20, 2015, 08:33:37 pm »
sayday they should have been monitoring you blood levels, I was every 2 wks now with anemia every wk.
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline RightHere

  • Member
  • Posts: 21
Re: Day 2 Harvoni + Ribavirin
« Reply #24 on: May 21, 2015, 08:00:07 pm »
Hi all,

I wanted to thank you for this thread so far; it's been very helpful esp. since I'm not finding much about the side effects of Harvoni +Ribavirin combined.

KimInTheForest, my partner may well start the same Harvoni + RBV 12 week trial in the near future. He is genotype 3a with low fibrosis and otherwise healthy. I've been trying to gauge how severe the side effects might be as he will be away from home during the treatment and working for the first 6+ weeks of the trial on a job that requires focus to operate machinery and physical stamina. So this has been helpful and somewhat reassuring. I'm prepared to leave my job so I can go support him if needed, but we'll have to just cross that bridge when and if.

We are concerned about insomnia and work. Do you guys take anything to help sleep when needed? And I would be curious to know where on the scale from irritation to rage one tends to fall when taking RBV? It also sounds like the timing of ribavirin makes a big difference - if your work day started early, would you take the first dose upon waking?

Thanks again for sharing your experiences and any thoughts you might have.
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline saydey

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  • Posts: 11
Re: Day 2 Harvoni + Ribavirin
« Reply #25 on: May 21, 2015, 11:17:18 pm »
Anemia update, and welcome RightHere. I had the same problem finding info about Harvoni and ribavirin combined. I started 4/11 so now reaching the end of my sixth week.  I've had a lot of problems with severe anemia, which is caused by the riba. Got dosage reduced from 1000 to 600 mg (?) and as of today,  no ribavirin for at least a week depending on results.  Got my first shot of Procrit today, I think this stimulates red blood cell growth.!


RightHere,  will your partner be able to get lab work done at the work location?   My doctors base so much on those blood results,  sometimes I think they don't even need to see me, just my blood. Heehee.  There's even a poster of Dracula in the lab room
Started Harvoni & Ribavirin 4/11/15. 
Hep C 70s or 80s,  Diagnosed in about 2005.
Cirrhosis diagnosed 2011. Decompensated as of 5/2015
Gen 1 viral load before starting tx  2,900,000.
4 weeks VL <15 still detected
8 weeks VL <15 UNdetected :)
Hopeful EOT  July 4, 2015!
Added 4 more weeks Harvoni & Riba 800mg, Not.
Insurance declined payment beyond 12 weeks.
Still undetected at 1 week after EOT, yay!

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #26 on: May 22, 2015, 01:47:03 am »
Hi RightHere. And welcome to this thread. :)

Regarding insomnia and timing of the ribavirin, I have had no insomnia problems (other than my own occasional manageable insomnia) since taking my 2nd dose of ribavirin no later than 5 pm. Most days I take it at 4:30 pm. So that solved that problem for me (since before I had been taking it later).

As you can see from reading these forums, some people have a lot more trouble with side effects than others. In my own case, now at Day 17 of Harvoni+Ribavirin, I have not found it to be interfering with my life in any way. In fact I seem to have more energy for the most part (although I napped all day yesterday and was unable to do anything). I work from home, which gives me some flexibility in this situation.

I may be hit with big fatigue in the weeks ahead because of the hemolytic anemia that seems inevitable with ribavirin.

As for the so-called "riba rage", which seems to actually cover a range of emotions - my trial nurse told me it is more likely to manifest as teariness, crying at commercials with puppies, that sort of thing. And I have experienced some of that (not over TV commercials though). It's been a positive thing. I feel I am experiencing life more deeply and enjoying beauty more - to the point of tears.

One thing I am noticing is that a lot of side effects seems to appear and then disappear after a week or two - as though the body learns how to deal with it or something. The dry cough I had developed seems to be abating. Night sweats may be also.

Your partner will be need to get the regular lab work done as per the trial schedule - and possibly at the trial centre itself. It may not be possible for him to go into another clinic elsewhere because of Gilead's approval process in which they vet every clinic administering one of their trials. I don't think I could go elsewhere for my labs (not that I would want to - I am very happy with the quality of care I am getting in this trial. They really know their stuff!).

Best of luck to you and your partner! :)

kim
« Last Edit: May 22, 2015, 01:50:22 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #27 on: May 22, 2015, 02:02:28 am »
Hi Saydey. Let us know if you feel any different/better after the ProCrit shot. Hope that does the trick for you. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #28 on: May 22, 2015, 07:32:56 am »
Hey sayday, please post results and any sides of ProCrit. Hope it works for you.
Thanks
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline saydey

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Re: Day 2 Harvoni + Ribavirin
« Reply #29 on: May 23, 2015, 09:48:00 pm »
Thank you Kim and Rich, will do.  Procrit, or Epogen  shot was not so bad to get. I was scared b/c the RN had said "we're going to shoot you in the stomach".  Well, it does go into the fat, more to the side. Very weird feeling, like a blob entering under my skin. Hey we could all make some scary movies with all that goes on! But, After the shot they told me it was a series and this first dose was not going to make me feel any different! Let's do it again next week.  Also they offered to teach me to do it myself...don't want to go there so they'll do it. Only side is a dry metallic taste, still there.
Sorry
Btw, my hemoglobin # was 9.2, down from 10.5 on May 1? I guess I'll post results when I get them.

Thank you all for being here. There's no one I can talk to and I appreciate your shares.  I'm not as alone as I feel.
Started Harvoni & Ribavirin 4/11/15. 
Hep C 70s or 80s,  Diagnosed in about 2005.
Cirrhosis diagnosed 2011. Decompensated as of 5/2015
Gen 1 viral load before starting tx  2,900,000.
4 weeks VL <15 still detected
8 weeks VL <15 UNdetected :)
Hopeful EOT  July 4, 2015!
Added 4 more weeks Harvoni & Riba 800mg, Not.
Insurance declined payment beyond 12 weeks.
Still undetected at 1 week after EOT, yay!

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #30 on: May 23, 2015, 10:34:19 pm »
sayday thanks for the update, I might be going the same path if reducing ribavirin doesn't bring my RBC back up.
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #31 on: May 24, 2015, 09:38:49 am »
Thanks for the welcome and all the info in the thread and in response to my post.

saydey and Kim: Yes, my partner will be getting his lab work done at the clinic running the trial which is commutable from his work site and since it's located in a city center, I imagine the care will be good; they do want good results for the study after all, right! The appt. schedule is every week for the first 2 weeks and then every two, but would guess that could change if anemia concerns arise. Unfortunately, neither work or the trial are close to home/me so we'll be navigating this at a distance.

Appreciate the info on anemia; it does seem like the earlier side effects might be unpleasant, but tolerable and that things so can get difficult later on with the ribavirin-induced anemia. We'll be looking out for that and I'm thinking that a support visit later in the trial might be best. Any sense if it's truly inevitable?

Kim, I read my partner your response and he was really appreciative. And I'm glad to hear that riba-emotions need not be in rage form. Some welling up seems appropriate actually.

saydey, hope that procrit shot does the trick and those red blood cells are increasing rapidly.

all best.
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #32 on: May 24, 2015, 10:50:06 am »
Hello RightHere. My trial nurse told me that some people on Ribavirin (at least with the all-oral treatments) don't ever experience much or any tiredness or fatigue, and so I might not. My hemoglobin and red blood cells are now below normal, but I cannot say I have felt tired or fatigued - just the reverse. I think what is happening is that I have so much more energy and mental clarity than I have had for years, now that the drugs have knocked down the virus to practically nothing and my liver is functioning properly again (enzymes normal for first time in 20 years), that this is offsetting the fatigue that the riba-anemia would otherwise be causing. Just my theory. And I may be in for fatigue and tiredness down the road. I am now at Day 20, so nearly 1/4 done. :)

Best of luck to you and your partner! It will be worth it in the end.

kim
« Last Edit: May 24, 2015, 10:55:05 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #33 on: May 24, 2015, 11:09:21 am »
Thanks Kim. Day 20 sounds very good to me. Hope that it continues to go well for you. We're definitely going for it if he gets accepted into the trial (knock on wood). It's hard not to get your hopes raised as treatment comes closer. Worth it for sure. cheers

My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #34 on: May 24, 2015, 11:49:25 am »
Day 21, waiting for blood results still from May 18. Only thing I know is anemic from phone call from nurse. E-mailed asking for full results.

Welcome RightHere and your partner, hope everything works out for you two. Didn't know trails were still going on for Harvoni since it was approved. My nurse only recommenced melatonin for sleep. Does not seem to make much difference. But I am sleeping a little better than before ( I seem to have bouts of night cramps in legs that come and go, just as I hope I'm over them they come back).

Best to everyone
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #35 on: May 24, 2015, 12:06:38 pm »
Hi Rich. Harvoni has only been approved for Genotype 1 - at least here in Canada where RightHere and I are located (I think RightHere is in Canada if her partner is going to be part of same trial as I am in). I thought that was the case in US too - Harvoni only approved for Geno 1, but I am not sure of that. In some ways, it is a great time to be Geno 3 because a lot of trials are going on for Geno 3 people right now, which means lots of treatment opportunities for drugs we Geno 3s would otherwise be waiting years for. :)

kim
« Last Edit: May 24, 2015, 12:10:13 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #36 on: May 24, 2015, 02:44:19 pm »
Hi Rich, Thanks for the welcome. I hope you receive more detailed information on your most recent results soon. You've probably seen this, but in case you haven't, I have read in other threads (related to SOF +RBV) that some view anemia as an indicator that the RBV is fully saturating their system and doing its job. I have seen also a reference to reaching "stable anemia" levels during treatment.

As Kim mentioned, this is a trial targeting genotype 3 and we are in Canada, although there are centers for the same trial across the US as well according to clinicaltrials.gov. (still knocking on wood).
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #37 on: May 24, 2015, 06:48:55 pm »
Thanks RightNow I had not seen that, thanks for the info.
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #38 on: May 27, 2015, 02:59:46 pm »
Hi Rich. How are things going for you with the anemia? Is dose-reduction being discussed by your Dr.? I must be anemic by now too, or on my way at Day 23 Harvoni/Riba. Still feeling pretty good, but did have shortness of breath and fatigue yesterday evening for a bit.

Keep on keepin' on :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #39 on: May 27, 2015, 03:28:42 pm »
Hey Kim
Day 24 for me, end of day very tired (I don't think waking up between 2-4am helps) heavy legs, out of breath and some brain fog (mixing up words,forgetting things, driving past destinations). Nurse called me on the 19th told to reduce ribavirin from 600mg twice a day to 400mg twice a day, and to have a additional blood test this Monday (holiday in the states), but I drove to the hospital anyway to find the lab closed. Went back Tue for the test.
Have not yet recieved the results from the 18th blood test so I don't know what my RBC levels were so I could do a comparison  to May 4. I do blood and HCV test on June 1st, and see Doctor on the 8th to discuss. Last time I saw Doctor was in April, I think, really want to know virus levels, started out at 17.5 mil.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #40 on: May 27, 2015, 03:31:04 pm »
Kim sorry I forgot to wish you the best and to keep on keeping on.

PS Baby sitting for the day 6 year old grand daughter
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #41 on: June 01, 2015, 07:26:25 pm »
Kim, RightHere, sayday, dennyhil How you all doing?

rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #42 on: June 01, 2015, 08:15:01 pm »
Hi Rich. I have just finished my 1st 4 weeks of pills. Will be going in tomorrow to get my Week 4 labs done and to find out the results of my Week 2 labs. So far all is good with me. No sides of any significance. For the most part I have noticeably more energy and better mental functioning than when I started treatment.. Sometimes, I seem a little tired and cannot get much done. Not sure if that is the riba-anemia, or just what was my typical state before treatment (and which has largely disappeared during treatment).

How about you, Rich? Has the dose reduction on Riba helped with sides? Results back from the labs you did last week?

best to all of you!
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #43 on: June 01, 2015, 08:28:08 pm »
Finished my 4th wk Sunday, gave blood today for the big test, VL load etc. Symptoms are about the same, a little more energy, sleeping a little better too, some brain fog on and off. Anemia seems to have leveled off I think. Still RBC went down just a little more, but no call from Doctor's office so it must be OK. We have 8 wks to go. Yea

I hope everyone's blood results come back good ( VL load ).
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #44 on: June 03, 2015, 07:48:38 pm »
Hi all,
ricpark, I'm glad to hear the anemia might be stabilizing and a little more sleep sounds like a good thing too.
Kim, I hope your week 4 visit went well.
We've just heard that my partner has been accepted into the trial and Day 1 is coming up very soon. So I'll be on the slightly anxious sidelines for awhile unless side effects require me to travel to him. Here's hoping . . .
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #45 on: June 03, 2015, 11:48:53 pm »
That's wonderful that your partner has been accepted into the Harvoni/Riba trial, RightHere! Congrats on that! :)

I have been quite tired and low energy last 3 days (beginning of Week 5). This is the first time since starting that I have had a consistent pattern of tiredness. So, probably riba-anemia. But there may be other factors that I can do something about. I continue to have appetite suppression on these drugs. And I have been losing weight because I just cannot eat enough food. So I honestly think some of my tiredness is due to fact that I have not been getting enough calories or fat or nutrition into me. I know - fat seems like a weird and wrong thing to eat if liver is struggling. But what I craved (so I just made it) were some nice juicy chicken drumsticks with potatoes & butter. It was all very good, and I ate a big plateful with chard & onions thrown in for good measure. ;)  If I can do a bit more of that (follow my food cravings when I have them, because I believe the body knows what it needs), I suspect some of my tiredness will lift. I already feel better and peppier - and I just downed all this food a few minutes ago!

Had my Week 4 checkup yesterday. My Week 2 results were in:

VL <15 IU/mL, HCV RNA detected. (Down from 4,000,000 on Day 1)

My ALT & AST were both just a tad above the normal range - but still, way lower than they have been in 20 years of monitoring.

Hemoglobin and Red Blood Cells both low (109 & 3.5 respectively). And they're probably lower now.

Other than that, all is good. I can't believe how much better I feel now after eating that food. Who woulda thunk food was so important… LOL ;)

best to all of us on this path!
kim

« Last Edit: June 04, 2015, 12:21:10 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Philadelphia

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Re: Day 2 Harvoni + Ribavirin
« Reply #46 on: June 04, 2015, 05:37:39 am »
I'm on Viekira Pak and riba. I've dose reduced due to anaemia. I was on 1000 whatever's of riba ( three tabs in morning, two in the evening), now I'm on one morning and night. 400 whatever's. I went UND some time between Week 4 and Week 8, despite a dose reduction at the start of week 3.
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 ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #47 on: June 04, 2015, 06:00:38 am »
Kim, no life without food, we all need some fat in our diet especially kids for brain development. I have sugar cravings. Your numbers look good, I never got anything back yet hope to on the 8th when I see Doctor. Cramps and unable to sleep is back last 2 days, seams to come in cycles.

Philadelphia, they had me on 600mg twice a day for a total of 1200mg of ribavirin. Knocked it down to 400mg twice a day when I became anemic. No calls from doctor so I think I'm stable (weekly blood test) or a level he thinks I can deal with..
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #48 on: June 04, 2015, 12:27:24 pm »
Hi Philadelphia & Rich. With your respective dose reductions on the riba, do you feel better or different as a result?

Gonna go eat some more food. I think this eating thing (or lack thereof) was part of my problem.

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #49 on: June 04, 2015, 03:18:48 pm »
Kim, the same I think it was caught early. I am extremely fatigue today, 2 days no sleep to speak of and stress( wife had breast cancer surgery yesterday, OK and lymph nodes clean).
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #50 on: June 04, 2015, 03:29:34 pm »
Wishing your wife a full recovery, Rich! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #51 on: June 04, 2015, 04:25:43 pm »
Thanks Kim, my wife is only 57 (I'm 67 she was to take care of me, Life flipped it) in 5 wks time I learned first Frontotemporal dementia(very fast) and 2 wks later Breast cancer. Shit load of bricks hit me while I'm dealing with Harvoni.

But what I told my kids and grandkids life is a struggle for all creatures on this planet, you just have to make the best of it and not let it get you down.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline Philadelphia

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Re: Day 2 Harvoni + Ribavirin
« Reply #52 on: June 04, 2015, 04:43:07 pm »
Hi Kiminforext, I feel a million times better. I was nauseated, had trouble finding things I could eat (lost 5 kg in two weeks) and was deeply fatigued.  My hg dropped a lot and quickly. They ran a ribavirin level test on me and I had very high levels - I was absorbing it far too well. That's why they were happy t o reduce my dose.

Now I just get tired by the end of the day
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 KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #53 on: June 04, 2015, 05:37:57 pm »
But what I told my kids and grandkids life is a struggle for all creatures on this planet, you just have to make the best of it and not let it get you down.

Wow! Beautiful attitude and outlook, Rich - especially for someone dealing with such adversity. Your kids & grandkids are lucky to have you in their lives!

@Philadelphia: Glad to hear you are feeling so much better. What was involved in the ribavirin test they ran on you - just another type of blood test to determine how saturated your RBCs were with Riba?

best to both of you,
kim :)

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #54 on: June 08, 2015, 04:42:53 pm »
Just got home from Doctor's office, finally some good news in my life.
4th week blood test results,
VL undetected
AST normal 29
ALT normal 27
HB 12.2 up from 11.4 (still a little anemic but a little better)

The 50 year old dragon is dying, I wish everybody with Hep C would get cured.
Been waiting for this day for 20 years since I have known that I have it, tried to get in study for harvoni, that's how I found out I had cancer. HCV and lymphoma have a connection, so my chances are better now for cancer not to return (was higher as long as I was infected).
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #55 on: June 08, 2015, 09:47:32 pm »
FANTASTIC to hear this news, Rich!!! I am so happy for you. You are on your way! :)

My Week 4 results will probably be available at end of this week. Will post.

I hope you are celebrating! non-alocoholicly, of course ;)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #56 on: June 08, 2015, 11:23:47 pm »
Hi all,
Just wanted to pop in and say how nice it is to see such promising test results for both Kim and Rich.

Rich, you are certainly due some good news; I'm glad you've received some and hope that your wife heals well from surgery.

Glad things are also headed in the right direction for you too Kim. And appreciate the reminder that food is an important factor in maintaining well being during treatment.

My guy is at Day 4 with harvoni+ riba and so far he's had mild issues - the headache, need for lots of water/dehydration, and feeling somewhat unsettled and twitchy (particularly after the evening dose of just ribavirin). He definitely feels like there is something on board.

Glad to hear that you will have your week 4 results sooner than later Kim.

best to all. RH
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline Trenz

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Re: Day 2 Harvoni + Ribavirin
« Reply #57 on: June 10, 2015, 04:39:14 pm »
I had been approved for 24 wks of harvoni and riba.

They approved the 24 wks because I relapsed about 9 months ago after 12 wks of sovaldi, interferon, riba and being und at 6 wks into treatment.

I just found out from my doc that Caremark disapproved the last 8 wks of harvoni.  Not the doctor or insurance company, some bean counter at the prescription management company.  My docs office has been on the phone for hours yesterday and today trying to get answers.  I may have taken my last harvoni this am and not realized it.  I don't even know what to think

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #58 on: June 11, 2015, 05:36:41 pm »
Hi All. Just reporting in. My week 4 results are in (drumroll please)… UNDETECTED :)

Of course, reaching SVR12 still undetected is the one that matters. But it is so great to hold these lab results in my hand and read the words on the page.

Liver enzymes both normal (ALT=9, AST=25).

My hemoglobin and red blood cells are both below normal (as is par with ribavirin):

HGB=102 (normal=115-158 g/L)
RBC=3.3 (normal=3.9-5.5 TI/L)

I have not really been having problems with tiredness or fatigue or shortness of breath. Occasionally a late afternoon slump. But I have discovered food fixes that.

My glucose level has been consistently high since starting treatment. At Week 4 it was 6.66. (Normal is 3.89-5.55 mmol/L). I have never had high (or low) glucose on any lab results in the 20 years I have been collecting my lab results, and I have no family history of diabetes on either side of family. I think something about the treatment is affecting my glucose levels, or my pancreas's ability to produce insulin, or something. I think that is why I have such rapid recovery from tiredness after eating. (Like within 5 minutes, energy normal again). And I think that is why my legs are shaky when I first get up in the morning, but then fine after about 60 minutes - after my 1st cup of tea with milk.

Cheers!
kim :)


« Last Edit: June 11, 2015, 05:38:36 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #59 on: June 11, 2015, 06:11:17 pm »
KimInTheForest. Yay! Yup, I know its SVR12 that everyone wants in the end, but it sure is great to hear that you've gone undetected so early in the treatment. That's some powerful news!

Interesting info on your glucose levels. We'll have to keep an eye out for that. Are they suggesting any adjustments to your ribavirin dose at this point to address your lower than normal hemoglobin/RBC?

Hope these results help buoy you up when you're trying to find something good to eat for those pm slumps. Thanks for sharing!

Trenz, I hope your doctor is a good advocate and can get the prescription company to move on this surprising decision. They certainly owe you some info on what's going on.

best, RH
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #60 on: June 11, 2015, 06:24:25 pm »
Thanks RH :)

They have told me right from the beginning that dose reduction of the ribavirin is a possibility if I seem to be having difficulty with the low HGB/RBCs. But they aren't actually recommending it at this point. I think they said it isn't a worry as long as HGB doesn't fall below 100. (Mine is close to that, and may be there now 9 days after those labs were taken.) And even if it does fall below, the question of whether to dose-reduce is still partly dependent on how the patient is responding to it and tolerating it, my trial nurse says. She says some people don't have a big problem with lower levels, while others need to be dose-reduced even when their numbers are still in the normal range because they are feeling so weak and fatigued.

Trenz: Welcome! And I hope your Dr. can get you the rest of your Harvoni. We are hearing far too many stories of all kinds of bean-counters making medical decisions to curtail people's treatment duration in order to save money. Crazy. Will cost everyone more in long run. Good luck to you!

kim

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #61 on: June 11, 2015, 10:20:44 pm »
Congrats Kim, great undetected VL, AST and ALT really look good. My RBC dropped to 3.5, reduced riba 1200mg per day to 800 per day, stable RBC at 3.63.

Trenz keep fighting, took me 6 months for the death panels I mean Ins Co to approve any treatment for me.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #62 on: June 11, 2015, 10:29:56 pm »
Thanks Rich. Are they going to return you to full dose ribavirin? Or keep you at 800?

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #63 on: June 11, 2015, 10:35:50 pm »
Stay on 800mg as far as I know
rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #64 on: June 11, 2015, 10:53:20 pm »
Rich, has your blood glucose been high? Mine has been high since beginning treatment, which has never before happened on any lab results in last 20 years, afaik. Also, zero family history of diabetes.

Just came across this document, for anyone who may be interested in the elevated glucose/harvoni connection: http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2015_harvoni_173180-eng.php

Relevant info is under the summaries of the ION-2 and ION-3 Studies for Harvoni (or you can search the document for "glucose" and find the 5 occurrences).

ION-2: "The most common Grade 3 or 4 chemistry laboratory abnormalities across treatment groups were increased serum glucose (all patients had a history of diabetes, were taking diabetic medication, or had glucose intolerance at screening) and increased lipase."

ION-3: "The most common Grade 3 or 4 chemistry laboratory abnormalities across treatment groups were transient levels of increased lipase and increased serum glucose. None of the patients with lipase elevations had an AE [adverse event] of clinical pancreatitis or developed treatment-emergent clinical events of pancreatitis. The patients with Grade 3 or 4 increased serum glucose all had a history of diabetes, were taking diabetic medication, or had glucose intolerance at screening."

I have no history of diabetes. But I am also not Grade 3 or 4 in my abnormal blood glucose - just Grade 1 (at 6.66 mmol/L). So it DOES appear from this Health Canada document and my own experience that Harvoni has a tendancy to elevate blood glucose. I am assuming my own elevated glucose will resolve to normal levels at end of treatment. Just another 6.5 weeks to go! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Trenz

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Re: Day 2 Harvoni + Ribavirin
« Reply #65 on: June 11, 2015, 11:03:17 pm »
Thank you all for your well wishes.  They worked!!  Got word that they approved weeks 17-24.
 This is my third attempt  to slay the dragon with meds and the sides have been the mildest this time.  Big time fatigue, but pretty minor anemia, nausea and headaches this time.  One thing that's new this time around is I have been having some pretty wild swings in blood glucose.  It's been as low as 52, high as 320. Must be the harvoni, it's the new dog in this fight.
I've been und since week 6, the same as when I did the sovaldi,inter, riba last year.   It's gotta work for good this time.  I'm in my 60's and don't think I can wait for another med or stand another round of treatment.
 Wishing the best to everyone in these rooms.  I feel pretty good about our chances of getting cured with the harvoni, even if we have to suffer a little to get there.
 Hang Tuff Y'all

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #66 on: June 11, 2015, 11:21:53 pm »
Hi Trenz. Congrats on getting approved for final leg of treatment! I agree - it's all worth it to get cured.

re: blood glucose… you probably saw my comment right above yours in this thread with a link to a Health Canada report that mentions how Harvoni drives up blood glucose.

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Trenz

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Re: Day 2 Harvoni + Ribavirin
« Reply #67 on: June 12, 2015, 12:45:56 am »
Thanks Kim...I did see your post on blood glucose.  What's strange is I have had more bouts of low sugar than elevated.  It comes on quickly, I start shaking, sweat profusely and get extreme fatigue.  I'd checked my sugar and it would be 50-60. At first I was eating candy and an apple and washing it down with a fully sugar loaded coke.  A few minutes later my level was around 200.  I would pass out for an hour or so and when I woke up felt pretty "normal". My family and friends that are nurses advised peanut butter and crackers and OJ, it would gradually go up instead of spiking.  That has worked out better.  The other strange thing is the glucose has been pretty stable the last 2 weeks.  The body is a very strange piece of work.

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #68 on: June 12, 2015, 02:06:04 am »
Body is very strange piece of work indeed, trenz! What other foods are recommended for stabilizing blood glucose and preventing spike or plummet? I did not know about peanut butter. will try that.

i think my glucose too is going down as well as up - and in a way it never did before treatment, i.e., outside of the normal range on both ends. my legs are very shaky in morning when i get up. an hour later after first cup of tea and milk they are fine for rest of day until next morning. i suspect i have abnormally low glucose in mornings right now, which corrects just from the tiny bit of lactose in the milk in my tea…

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #69 on: June 12, 2015, 02:59:07 am »
Was just reading up on foods that are important for stabilizing blood glucose. Good quality fats tops the list, with fats from animal sources being preferred. How interesting that for the last week or 2 I have been craving (and yamming back) chicken drumsticks, eggs, sausage. These are not foods I normally crave. I guess my body was trying to get something in it that would help slow the release of glucose.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #70 on: June 12, 2015, 08:03:49 am »
Good news Trenz
Kim my glucose is 84 can only find 1 result posted by doctor. Diabetes runs in my mother's family.

rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #71 on: June 12, 2015, 12:47:34 pm »
Hi Rich. What units is your blood glucose measured in?

My high reading of 6.66 is mmol/L. Normal is 3.89-5.55 mmol/L.

I am going to guess that your reading of 84 is using different units…?

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #72 on: June 12, 2015, 02:43:03 pm »
Glucose   84 mg/dL (Better)    Range: 70-100

Captured off web doc

rich
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #73 on: June 12, 2015, 02:48:02 pm »
You seem to be in the normal range for glucose, Rich, if I am reading that correctly. great! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #74 on: June 12, 2015, 04:24:05 pm »
Kim all the latest good news on my condition is lifting some of the stress off my shoulders. Like I said earlier I wish good news for everyone.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #75 on: June 17, 2015, 09:32:33 pm »
How are all of us Harvoni+Riba folks doing? RightHere, how is your partner doing?

I was having more trouble with anemia/low hemoglobin last week (Week 6) than I am so far this week (Week 7). I have not dose-reduced my Ribavirin from my starting level of 1000 mg/day.

The dry cough comes and goes. That has been my most persistent side effect. Everything else has sorted itself out (usually after just 7-10 days). So I wouldn't say I am having any real problems or issues. But I WILL be glad when I take my last pills and this leg of the journey is over. Even though you would think that hitting undetectable at Week 4 would have been my biggest cause for celebration, hitting my halfway point 2 days ago was actually a bigger deal. I felt VERY uplifted. :)

wishing the best for all of us,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #76 on: June 18, 2015, 08:54:28 am »
Hello Kim et al,

My guy is almost at end of week 2 and so far, so good. He's been able to continue working at a fairly physical job with long days. Fatigue and headaches, but manageable thus far. We're looking forward to getting the week 1 results. Not so easy to find a balance of hope and expectation while still trying to keep that thicker skin against the need for a longer run at this.

Dry cough has checked in with him as well, although not a concern at this point. I'm thinking that he'll have to have a stash of snacks against that low blood sugar feeling as he mentioned feeling a bit dizzy yesterday which resolved with food.

Cheers to reaching the halfway mark! Glad to hear your spirits are up.

Best to all. RH

My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #77 on: June 18, 2015, 09:46:26 am »
Kim
Just dealing with cramps and fatigue. Never had a cough. We are on the downside (5.5 wks to go), the end of the tunnel is coming into view.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #78 on: June 26, 2015, 09:57:23 pm »
So . . . my partner (GT 3a, F1, treatment naive) is now at end of week 3 of Harvoni +ribavirin, clinical trial and we just learned that his week 2 results came back undetected! Week 1 result was <15. Lets just say that hopes have definitely been raised.
Best to all.
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #79 on: June 26, 2015, 11:34:35 pm »
Fantastic news, RightHere! What was his viral load at start? Mine was 4 million. At Week 2, I was <15 but still detected. At Week 4 I was undetected.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline RightHere

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Re: Day 2 Harvoni + Ribavirin
« Reply #80 on: June 27, 2015, 06:54:34 am »

His viral load at baseline was fairly low; I believe it was at 1 million.

I was pleased to see your post that suggested high antioxidant foods while on riba. He's been having a blueberry smoothie every morning for months now so maybe that's helping. Wonder if I can convince him to start alternating with a tomato smoothie?  ;)
My partner:
M/early 40’s
Had: HCV genotype 3
Fibroscan: F1
treatment: Harvoni +ribavirin 12 weeks (clinical trial)
undetected by 2nd week of treatment
end of treatment: end of Aug 2015
12 weeks post EOT: undetected
8.5 months post-treatment: undetected

Offline KAL

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Re: Day 2 Harvoni + Ribavirin
« Reply #81 on: June 27, 2015, 04:01:15 pm »
this is a good thread for those on riba , ...i was concerned about my glucose at week 6 test @ 106......never had any issues with diabetes nor family history.

i have a tip for the dry cough issues ,...it is not medication related dry cough so it may be irrelevant but who knows............anyways,, a few years ago i was having a dry cough issue and mentioned it to a friend (a retired RN) , she asked "do you sleep with with a ceiling fan on" my answer was "yes, full blast"  she explained the the circulating air becomes so dry it messes your throat up..........i was skeptical but tried it and sure enough , no more cough .
age 57 male
diagnosed 1980
geno type 2b
f4 cirrhosis(early/compensated)
sovaldi / riba 16 weeks
1st. day tx may 4th. 2015
4 week test Undeteced !

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #82 on: June 27, 2015, 04:24:22 pm »
Good tip on the ceiling fan/cough connection, Kal. In this case, the cough actually is a documented and common side effect of Ribavirin. (I got it wrong in my earlier post in this thread where I blamed it on Harvoni.)

Some days I have no cough, then it comes back and I start sucking on Ricola lozenges, which works so long as I don't talk - haha! ;)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KAL

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Re: Day 2 Harvoni + Ribavirin
« Reply #83 on: June 27, 2015, 05:01:25 pm »
ricola stop's one from talking? thats a good side effect , i'll have to get some for my mother in law hehe......
has your glucose changed better ?..........mine was high , never had this issue before.
age 57 male
diagnosed 1980
geno type 2b
f4 cirrhosis(early/compensated)
sovaldi / riba 16 weeks
1st. day tx may 4th. 2015
4 week test Undeteced !

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #84 on: June 27, 2015, 07:59:37 pm »
Hi Kal. I haven't seen more blood work to know if my glucose has gone back to normal. But I am feeling like it has. Will have more labs taken on Tuesday and will post results here when I get them. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline garyc

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  • geno 1a Interferon/Rib in 2010 Failed Cirrhosis-4
Re: Day 2 Harvoni + Ribavirin
« Reply #85 on: June 28, 2015, 07:45:38 pm »
Kim told me about this thread and suggested I might want to chat with you all. Sounded good to me. Just to give you an update on my journey I will just copy and paste to this thread the last post from another thread. I have to say it is great to hear that Harvoni is curing genotype 3 also. I am 1a but HCV torments everyone the same, regardless of genotype.

Just wanted to update everyone on my Harvoni journey. So I contacted my Gastroenterologist and the pharmacy that helped get me on Harvoni and Ribavirin. Although my HCV profile calls for 24 wks of treatment Oregon will not authorize it only 12 wks of Harvoni and Ribavirin and if at 10 wks I still have detected virus in lab work they allow a request for 4 wk ext which would be 16 wks of treatment. But Dr and pharmacy said they have never heard of anyone receiving an ext. But anyway I believe I am going to be cured at 12 wks and have no relapse. Thank God! I took first pill on June 17th and have had very few side effects - more about them later but the amazing thing is I l ready feel 100 % better and everyone notices it. I have 100% more energy, brain fog is lifting (still some way to go but getting better), no pains and just all around feeling great. Now side effects - first day I had about 1 hr of severe acid reflux which I didn't do anything about and it passed.  Then about 3rd day I had 24 hrs of shortness of breath and since then then only side effect is 2 unusual bumps filled with puss on my arm. I broke one open with a sterile pin and then put hydrogen peroxide on it and wash my arm with hibacleanse several times a day. For a little bump loads of puss came out when I broke it open with the pin.  Sorry for being so gross but it is the only way to describe. Other than that everything is great  and that is nothing. I pray everyone else's treatment is going well and we all get SVR and no relapse whatever length of treatment we have. I'd like to know if anyone else felt this good after a week and also I'd like to hear about your side effects and if anyone had strange puss filled bumps.  God bless everyone  garyc

genotype 1a
cirrhosis stage 4
treatment experienced
2010 Interferon and Riba. Failure
VL April 2015 10.5 million
Started Harvoni + Ribavirin for 12 weeks on June 17, 2015
Modify message
Have a blessed day. gpc

Offline Be Free

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Re: Day 2 Harvoni + Ribavirin
« Reply #86 on: June 28, 2015, 08:05:07 pm »
I am new to the forum and new to taking Harvoni.  Thank you everyone for sharing your experiences.  After reading the forums for the first time, I was really scared to start my treatment.  People’s experiences seem to gravitate towards being very ill, with fatigue, headaches and nausea and so I imagined the worst and was afraid to start treatment.  In fact, I had the medication for over a week before I began taking it.  I am genotype 1 and have been on therapy (interferon) three times.  The last time, in 2002, I promised myself I would not try treatment again until a more body friendly medication could be found.  But skeptical if it would be found in my lifetime.  So it was surprising when Harvoni came on the market. 
The first week was rough but only because I am not used to feeling sick.  I felt fatigued and experienced a low grade headache much of the week.  And, I also should mention I have a low pain tolerance.
On day seven it hit so hard I had to lay down and rest.  Something I had been doing all week, but apparently needed more.  This has not been easy on me.  I also wanted to mention this medication might also bring on depression.  I certainly feel down, when I should be feeling happy that I’m going to finally be cured.
Drinking lots of water definitely helps.  I think if it wasn’t for that I’d be in worse shape.  I know the road ahead is going to be rough but I am going to push through and get through this so that I can BE FREE!

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #87 on: June 28, 2015, 10:50:30 pm »
Welcome to this thread Gary!

And welcome to the forums, Be Free! Good luck with your Harvoni journey, both of you.

Be Free: Even though parts of it may be tough, if you don't have Riba added to yours (which many of us here do), then at least you don't have that added issue to worry about.

I am almost done with 8 weeks out of 12 of Harvoni+Riba, and am feeling pretty darn good! As I have posted a few times before, side effects have not been much of an issue for me - nothing that has caused me discomfort. My primary side effect has been a dry cough (although even that has disappeared in last 2 days).

I find the Harvoni gives me a lift in both energy and mood - euphoric and omnipotent at times. But these things are all so individual. I know that some people have reported problems with anxiety while on Harvoni. And of course the Ribavirin can do a variety of things to one emotionally, different for each person.

Just keep your eyes on the prize. All of us will, in all likelihood, be rid of Hepatitis C by the time we are are done with a few weeks of these pills. And that's worth it. :)

Wellness to all,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #88 on: June 29, 2015, 06:53:32 am »
garyc
I have small bumps show up on my arms, no puss but they itch like crazy. They seem to come and go.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline Be Free

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Re: Day 2 Harvoni + Ribavirin
« Reply #89 on: June 29, 2015, 09:30:57 am »
Kim,

Thank you for your kind reply.   I really appreciate your kind words.  I didn't realize the riba was a factor for some.  That does explain to me the side effects people have. Everyone is stronger than I even thought.   No I am not on riba.  I don't know if it has to do with lower numbers or what.  My numbers have never really been very high.  And sometimes I even had to remind myself I have he c. I do not say that with any pride.  I take care of myself the best way that I can. I try to eat healthy,  I try to drink lots of water and I try to exercise, and prayers help.  I am determined to see this through and will not give up. Thank you again for your encouraging words. 

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #90 on: July 02, 2015, 10:00:06 pm »
Here is my progress report, everyone:

On Tuesday I started Week 9 (of 12) of Harvoni+Riba. And I had my blood work collected for my Week 8 labs that same day. My hemoglobin, which had earlier dropped below normal to 10.2 (or 102) at Week 4, has now dropped further to 9.8 (980). The clinic I am doing this through says so long as I am not having problems and can keep it above 9.5 (950), we are OK. But I will have my hemoglobin checked weekly at this point.

I have been VERY tired the last couple of days. Basically napping a lot, and then feeling like I am waking from a coma when I get up. Legs shaky. But it is also extremely hot right now, so I had initially just thought it was the heat causing my enervation. It is probably a combo of hot weather and low hemoglobin.

I also had 7 days of diarrhea, which finally stopped yesterday once I figured out what I needed to do dietarily to get back to normal in that department. The BRAT diet really works for this, as others on these forums have said: Bananas, Rice, Applesauce, Toast… must be white rice and white toast, no whole grains.

So it occurs to me that my 7 days of diarrhea (which felt very positive and cleansing and cathartic and like part of the healing process for the first 3 days) may have deprived my body of a lot of nutrients needed for building red blood cells, since you do not absorb properly when you have diarrhea. I am hoping that now that I am absorbing once again, maybe my hemoglobin will go back up a bit… We shall see.

An interesting side note about my diarrhea - I think I actually induced it myself by doing some lymphatic self-massage. My lymph nodes had swollen enormously (especially one under my jaw). And the lymph nodes are involved in straining out all of the crap and garbage in this drug-fueled virus massacre we are engaged in, which then exits through the bowel - all the dead virus, drugs, exploded red blood cells, exploded liver cells, etc. And so it felt (and looked) like my lymph nodes had gotten horribly congested and clogged with all this stuff and were not draining properly. So last Wednesday, I did quite a bit of lymphatic self-massage, plus some spinal breathing Qigong (which stimulates thymus gland in chest), plus took a long hot bath with more lymphatic massage work. The next morning my lymph nodes had really reduced in size (especially one under jaw, which has been size of golf ball)… And I had massive diarrhea, which continued for 7 days until I started the BRAT diet yesterday to turn off the tap so to speak. haha ;) Maybe more than you wanted to know, but there it is!

I also had a whole lot of decontextualized emotions coming out at the same time - as part of the purge related to the lymphatic stimulation (diarrhea and emotional release are both documented outcomes of lymphatic massage because you are releasing a lot garbage that had gotten stuck in the body). I was experiencing crazed laughter followed by sobbing followed by rage, all with no context, just there and spewing forth. It actually was really positive. By the end of 3 days of this I felt super light and alert and reborn. I have never felt such a rapid transformation before. But then the diarrhea wouldn't stop. So I finally read up on diet and seem to have it under control.

best,
kim

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KAL

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Re: Day 2 Harvoni + Ribavirin
« Reply #91 on: July 03, 2015, 02:20:26 am »
hi Kim ,  were in week 9 !!! you & ric can see the light at the end of the tunnel now , im past half way with 16 week treatment and feeling good about it.
sounds like your doing all the right stuff , i think diet is very important , iv'e been very militant about what i eat since starting tx .
iv'e been cruising along quite well ,....but i hear you on the mood thing , thru the course of the day it can shift around a lot sometimes.
i would bet the harvoni/riba is a little tougher than the sovaldi/riba that im on (geno2  ) ...the sovaldi is just 400mg sofosbuvir with out the 90mg of ledipasvir.

keep fighting Kim , the trophy is within sight !

K
age 57 male
diagnosed 1980
geno type 2b
f4 cirrhosis(early/compensated)
sovaldi / riba 16 weeks
1st. day tx may 4th. 2015
4 week test Undeteced !

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #92 on: July 03, 2015, 03:57:16 am »
Thank you Kal for the encouragement! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #93 on: July 05, 2015, 06:28:02 pm »
Kim
Have you received your 8 wk results yet? I see my Dr tomorrow for my results. 21 days left.
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline Be Free

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Re: Day 2 Harvoni + Ribavirin
« Reply #94 on: July 05, 2015, 07:08:57 pm »
It's end of week two on Harvoni.  At first I was taking it at night, and having trouble sleeping.  Then I remembered reading one of the blogs that said this medication can cause insomnia.  So I changed it to right when I get home from work, which is around 6:00.  This helped me sleep better at night.  That Harvoni high that I also read about must take place for me in the afternoons.  I feel so tired when I first wake up, and only start to feel clear headed half way through the morning.  I'm also a bag of emotions.  I notice I do feel better if I drink lots of water.  I think I mentioned this before.  It really does help.  Coffee has been hard to give up.  I've been weaning myself off.  It's only for 12 weeks, right?  I think I can do it.  Being on this medication makes me feel depressed.  But I am trying to stay focused and positive.  What's bumming me out besides all the symptoms from taking the medication is also I just started working out more intensely and really feeling good, then taking this medication has set me back somewhat to where I was before.  But I tell myself I'll get there again.  Prayers for everyone and keep the fight. 

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #95 on: July 05, 2015, 07:29:38 pm »
BeFree
I take  Harvoni first thing in the morning fasting (with Omeprazole 20mg for heartburn), wait 1 hour morning coffee (Dr said ok) 1more hour ribavirin with food, then ribavirin at dinner. I get leg cramps and take magnesium 2 or 3 times a day. Was told to balance out my water intake so I don't flush out the magnesium (what ever that means). If you don't get cramps water, water ,water. You will start to feel better very slowly (possible ups and downs on the way, everybody is different).
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline KimInTheForest

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Re: Day 2 Harvoni + Ribavirin
« Reply #96 on: July 05, 2015, 11:17:17 pm »
Kim
Have you received your 8 wk results yet? I see my Dr tomorrow for my results. 21 days left.

Hi Rich. All I was told by phone about my Week 8 results is that my hemoglobin now down to 980 (9.8 ). Which is pretty low. Will be getting my hemoglobin (and other hematology work) checked weekly from now on. They are not dose-reducing me yet, but we shall see. I have not yet asked for the rest of my Week 8 results. Will do that next week when I am checking up on my hemoglobin.

I actually feel pretty good despite the very low hemoglobin. But very glad I just have 22 days left!

Be Free: As far as I know, there is no problem with drinking coffee while on Harvoni. I have not heard any mention of that before. Most people keep right on drinking their morning joe as usual.

how are our other harvoni/riba people here doing? Trenz? RightHere? Saydey? GaryC? and the rest of you

best to all,
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline KAL

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Re: Day 2 Harvoni + Ribavirin
« Reply #97 on: July 06, 2015, 07:40:54 pm »
thought i'd share this , i've been eating so healthy since i started treatment i've substituted unhealthy snacks for healthy ones (rice crackers with almond butter, yum )

http://healthyeating.sfgate.com/advantages-almond-butter-compared-peanut-butter-6541.html

Opting for almond butter over peanut butter also proves advantageous due to almond butter's higher iron content. Iron promotes healthy oxygen transport -- it helps you make hemoglobin and myoglobin, two proteins that oxygenate your tissues. Like vitamin E, iron protects your cells from oxidative damage by helping to activate antioxidant enzymes in your cells. A tablespoon of almond butter contains 0.6 milligrams of iron, compared to 0.3 milligrams in a tablespoon of peanut butter. Each tablespoon of almond butter provides 8 percent of the daily iron requirements for men, according to the Linus Pauling Institute, and 3 percent for women.
Making H

K
age 57 male
diagnosed 1980
geno type 2b
f4 cirrhosis(early/compensated)
sovaldi / riba 16 weeks
1st. day tx may 4th. 2015
4 week test Undeteced !

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #98 on: July 06, 2015, 07:57:54 pm »
8th wk results

Red Blood Cell Count   3.47 MIL/uL (Below low threshold)   Range: 4.31-5.84
Hemoglobin   11.4 g/dL (Below low threshold)   Range: 13.0-17.0
Hematocrit   37 % (Below low threshold)   Range: 40-50
Mean Corpuscular Volume   107 fL (Above high threshold)   Range: 80-99
Mean Corpuscular Hgb   33 pg (Better)   Range: 27-34
Mean Corpuscular Hgb Conc   31 % (Below low threshold)   Range: 32-36
Red Cell Distribution Width   15.9 % (Above high threshold
Hemoglobin down a little (12.2 to 11.4)

Alanine Aminotransferase   33 IU/L (Better)   Range: 13-69
Aspartate Aminotransferase   30 IU/L (Better)   Range: 15-46
AST and ALT a little higher but still normal
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

Offline ricpark

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Re: Day 2 Harvoni + Ribavirin
« Reply #99 on: July 06, 2015, 07:59:14 pm »
Kim hows your cough?

no VL test 8th wk, Ins won't pay, next VL at 12th wk
Chronic 50 years
Geo 1A Stage 3
VL 17.5 mill
non-Hopkins lymphoma cancer
after 4 weeks
AST 87 now 29
ALT 128 now 27
VL now undetected
after 12 wks
VL  undetected

 


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