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Author Topic: Started Harvoni 3/12/15  (Read 103826 times)

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Offline Sailor

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  • Posts: 76
Started Harvoni 3/12/15
« on: March 13, 2015, 11:48:26 am »
I took my first pill this afternoon in the car outside the pharmacy.  My wife brought along a bottle of water.  I am involved in a high stress job and have taken about 10 days off including weekends in the last 10 months.  But I want to get this over with.  I am 1B with a count of about 3,000,000.  They tell me 6 weeks, then a check up and either 2 more weeks of 6 more weeks.  My doctor figured out I have Hep C 10 years ago and cornered me when Harvoni came out.  I had been following the research and had come to the same conclusion.

My wife and I think a lot of the fear of the drug comes from the horror stories of the previous drugs.  My Doctor filled out the forms, I received my approval, took it to the pharmacy and the Harvoni arrived the next day.  So here we go!

We are excited because we have been living with the knowledge of this for ten years.  I don’t know if I have any symptoms.  I get tired because of poor sleeping.  But so does my wife.  I think it comes with the aging process.  Maybe something will change after the regimen is over (assuming I am cured).  We are really interested to see.

I stopped drinking about 15 years ago.  Had a biopsy in 2006 and 2009.  The results were stage 2 of 4.

Offline hayliegirl

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  • Posts: 11
Re: Started Harvoni 3/12/15
« Reply #1 on: March 13, 2015, 12:51:05 pm »
I began taking Harvoni March 7th, just last Saturday.  Day (1) was more then fine, day (2) I was thinking, hmmm I can live with this, day (3+) I am struggling!!  Has anyone else experienced the heat rushing through your body?? I feel like I am boiling sometimes yet feel very cold on the outside.  I felt like since you were a newbie maybe we would be experiencing the same things??  I am ready to be cured, not ready for side effects!!

Anyone feeling this way??
Haylie

Offline Perca05

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  • Posts: 12
Re: Started Harvoni 3/12/15
« Reply #2 on: March 13, 2015, 01:38:17 pm »
Hi...I started on 3/4, and will be on it for 12 weeks.  I went through a week of night sweats, but that has calmed down.  So far, the only side I have now is thirst, so I am drinking more water than I usually do.  I actually feel much better than I did prior to starting this treatment.  Hopefully nothing changes through the 12 weeks other than I become SVR!  I started with 4.1 mil VL.  Will have test done at 4 weeks to see what is happening.  Do not worry...be happy!

Offline SIXFOOTFOUR

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  • Posts: 89
Re: Started Harvoni 3/12/15
« Reply #3 on: March 13, 2015, 01:51:34 pm »
Welcome and good luck!

I started march 6 for a 12 week course .

Probably contracted it as non A non B hep from a transfusion in a major accident in 1971, officially dx in the early 2000 when I went to give blood. VL for the past 10 yr has varied but I waited for a better tx and Im glad I did since the success rate is much higher and the side effects less than prior tx.

I guess Im lucky, only light headaches, very tired the first 3 days that has passed and occ nausea at about the 12hr mark after taking my pill.

I dont know if its just the knowledge that Im finally fighting this or effects from the Harvoni but now at 7th day I feel better in general, more energy and a clear head-focus that I dont think Ive had in years.  I think after reading alot of the stories on these forums that the side effects of chronic Hep C (pain, appetite, energy and more) often are not recognized and we take it to be part of  "aging etc" .

A lot of great info on here , best of luck in your tx.

   
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 hayliegirl

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  • Posts: 11
Re: Started Harvoni 3/12/15
« Reply #4 on: March 13, 2015, 02:13:06 pm »
You all are so helpful!! I'M NOT ALONE:)

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #5 on: March 14, 2015, 01:45:31 pm »
I have taken the medicine 2 times at 5:00 p.m.  Now I am in my 2nd day.  I have a cold, so it is difficult to know what is what.  However, I am well aware that I am "under the influence" of Harvoni.  It is powerful and it is manageable so far.  I worked 12 hours yesterday and I am well into another work day today, then the theater tonight.

Offline BubbaT

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  • Posts: 267
Re: Started Harvoni 3/12/15
« Reply #6 on: March 14, 2015, 03:10:58 pm »
Hello fellow warriors,

I'm almost at week 3, I'm doing better each day, had one spell!
Remember grandma talking about, I had a spell, wow, that was funny then, maybe not so now!  Lol

I had a fever, chill , vomit , nite and after that, missed a day of work, next day steady on ok,

But I did pray God help!  And he did! Yea!

My energy is better, I'm learning to de-stress and pick my battles!
Some issues are not worth me being stressed about!

Eating well is key, and getting plenty of rest, try not to take other rx drugs if possible,
Yogurt is good at nite... Plenty water, salads, no salt soups!

Help your liver heal...

Fight on brothers & sisters

Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline atomic dog

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  • Posts: 160
Re: Started Harvoni 3/12/15
« Reply #7 on: March 14, 2015, 07:12:55 pm »
I have taken the medicine 2 times at 5:00 p.m.  Now I am in my 2nd day.  I have a cold, so it is difficult to know what is what.  However, I am well aware that I am "under the influence" of Harvoni.  It is powerful and it is manageable so far.  I worked 12 hours yesterday and I am well into another work day today, then the theater tonight.

Sailor, all I can add to the good advice here is to not push yourself too hard while you're on treatment. Find time to rest. Might seem difficult, but there is something to be learned from this disease in a weird way, regarding mortality and taking the time to smell the roses, so to speak.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline atomic dog

  • Member
  • Posts: 160
Re: Started Harvoni 3/12/15
« Reply #8 on: March 14, 2015, 07:23:16 pm »
I began taking Harvoni March 7th, just last Saturday.  Day (1) was more then fine, day (2) I was thinking, hmmm I can live with this, day (3+) I am struggling!!  Has anyone else experienced the heat rushing through your body?? I feel like I am boiling sometimes yet feel very cold on the outside.  I felt like since you were a newbie maybe we would be experiencing the same things??  I am ready to be cured, not ready for side effects!!

Anyone feeling this way??
Haylie

Pure speculation, but remember that the liver is the largest internal organ. The Hep C inflammation itself can make you feel the heat and it's possible that you're sensing the Harvoni doing its thing and attacking the virus. Not unusual to feel side effects in the first week. Drink lots of water thought the day. And try to rest.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline hayliegirl

  • Member
  • Posts: 11
Re: Started Harvoni 3/12/15
« Reply #9 on: March 15, 2015, 12:05:09 pm »
Thank you all for your replies!! Found out I have pneumonia! I was pretty much glad when the doctor came in and gave me my diagnosis because if I had to live feeling like this I was not happy about Harvoni but sure enough it wasn't the Harvoni gremlins after all!!
Things are looking better...
Got to kick pneumonia's butt now;)

Offline atomic dog

  • Member
  • Posts: 160
Re: Started Harvoni 3/12/15
« Reply #10 on: March 15, 2015, 01:14:46 pm »
Congrats on the diagnosis, in a weird way.

Actually, really sorry to hear that you're going though this at such a crucial time in your Hep C treatment. Hope your recovery from pneumonia goes well. Get maximum rest, chicken soup, plenty of fluids and all the rest of it.

Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #11 on: March 15, 2015, 01:43:00 pm »
Starting day 3.  Had a full day yesterday.  Worked, spent time with my grand daughter, mentored my son-in-lay, went to a play with my wife.  All in all a full day.  Today (Sunday) expect to work about 5 hours, do some errands around the house, take a break this evening.

When I anticipated taking Harvoni, there was never a good time, so I went for it.  Part of the decision making process was a lack of understanding of what to expect.  I think the purpose of my posts is to record a history of my experiences and how it affects my normal day to day activities.  Perhaps this will help others anticipating treatment.


Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #12 on: March 16, 2015, 12:03:31 pm »
Starting Day 4.  This could get boring.  My cold is gone and I had a good sleep.  This morning I am not aware of any impact of the Harvoni.  I had a full day yesterday (Sunday) and have a busy week ahead.  I need to take a trip  in about a month to work on my boat, and am supposed to have my blood test then.  Today I have an opportunity to see my doctor, so I will check on the timing of the blood test.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #13 on: March 17, 2015, 04:53:24 pm »
Starting Day 5:

Yesterday was great.  Cold is gone and everything was good.
 
Late yesterday I was washing my car and (unbelievable) pulled out my back.  Today I can not walk.  Pain is excruciating and I couldn't find a sleeping position last night.

Went to the Dr. and got some sympathy and pain killers.  I was worried about taking Ibuprofen, but took some last night.  Dr. said is not a problem with Harvoni.  Hopefully I won't have to take the painkillers, just Ibuprofen and that for a short period.

Dr. said I can get my blood test between 4 and 6 weeks after starting Harvoni



Offline hayliegirl

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  • Posts: 11
Re: Started Harvoni 3/12/15
« Reply #14 on: March 17, 2015, 06:00:00 pm »
That's great you got some relief! I'm feeling much better now that the antibiotics have kicked in. I feel great today:) such a relief for me!! Harvoni is a life saver:) definitely saving mine!!

Offline hayliegirl

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  • Posts: 11
Re: Started Harvoni 3/12/15
« Reply #15 on: March 17, 2015, 06:00:21 pm »
That's great you got some relief! I'm feeling much better now that the antibiotics have kicked in. I feel great today:) such a relief for me!! Harvoni is a life saver:) definitely saving mine!!

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #16 on: March 18, 2015, 03:31:04 pm »
Day 6.  No problems with Harvoni.  Working away at full speed and trying to get my back to mend. I appreciate the comments.  Hopefully we will all be cured and get the weight of this disease off our backs.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #17 on: March 19, 2015, 02:29:22 pm »
Day 7   Harvoni impacts, if they exist, are lost as back round noise in the spectrum of the back pain I am presently experiencing.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #18 on: March 20, 2015, 04:04:02 pm »
Day 8 - Again back problem eclipses any Harvoni side effects.  Several discussions with Drs. about Harvoni and Ibuprofen.  Harvoni and Vicoden.  Harvoni and Percoset.  Nothing works with back pain except Ibuprofen.  Can't take much Ibuprofen, so I am off pain medication.  Also a steroid for inflammation.  Haven't slept for more than 20 minutes for 3 nights.  Got MRI today.

My guess is that I am not suffering any effects from Harvoni.

Couldn't make it without my wife!

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #19 on: March 21, 2015, 01:24:22 pm »
Day 9 - From what I can tell, I am not experiencing any Harvoni side effects.  I believe it works fast and that most of the virus extermination has taken place.  Maybe it is searching for the holdouts.

I am curious about viral load and why it differs from person to person.  Is the viral load an indication of the strength of one's immune system?  Can't find any literature.  I know viral load is not an indicator of liver condition.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #20 on: March 22, 2015, 09:59:29 pm »
Day 10 - Still fighting my bad back, but no discernable effects from the Harvoni.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #21 on: March 23, 2015, 12:12:51 pm »
Day 11 - Feeling good

Offline harvonitoo

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  • Posts: 20
Re: i have 7 weeks left of harvoni!
« Reply #22 on: March 23, 2015, 01:09:45 pm »
I have been prescribed 24 weeks of Harvoni, only 6 left to go and no side effects beside that very random once every 2 weeks strong headache which i take care with one tylenol 500 mg. pill.  I have cirrhosis  and since harvoni my liver functions are normal and I am undetectable. So I'm very happy about it!

I drink throughout the day half or even more that half of my weight in ounces of water ( i.e. I am 160 LBS I  drink 80-90oz of water every day. That seems to help a lot. i'm lucky enough to be able to do it as if you work outside of your home you can't constantly go to the bathroom to pee!  ;) Try to drink a lot of water but don't gulp it down, sip it through then day. best of luck!

Offline Sailor

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Re: Started Harvoni 3/12/15
« Reply #23 on: March 24, 2015, 10:30:38 pm »
Day 12 - Another good day

Thanks for the reply Harvonitoo.  With the length of your treatment, it is great to hear that your are doing so well.

Offline Israel

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  • Posts: 8
Re: Started Harvoni 3/12/15
« Reply #24 on: March 25, 2015, 11:12:39 pm »
Hi Sailor - It looks like you and I started on Harvoni on the same day, Friday the 13th!  I'm Genotype 1a with F2 fibrosis and viral load of 1.6 million.  Thus far I have not experienced any side effect whatsoever and have made no changes in lifestyle except that I stopped drinking coffee and soda.  I've had HepC for over 45 years and was diagnosed two years ago.  I didn't treat it sooner because I was waiting for a med with less side effects and a higher success rate.  You hang in there....and at the end of the 12 weeks, we will be just fine.  God bless.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #25 on: March 26, 2015, 09:56:12 am »
Day 13 - Still no noticeable side effects.

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #26 on: March 26, 2015, 10:03:12 am »
Day 14 - No discernable side effects. 

Thanks for the post, Israel.  I'm glad your treatment is going well.  I haven't modified anything.  Presently I am suffering from a severe back problem and am awaiting a meeting with a surgeon to get a diagnosis.  As I can't stay in any position for more than 20 minutes, I can't get much sleep.  This has far eclipsed my HEP C treatment.  I started Harvoni with trepidation and have found it to be very easy.  Who would have thought my attention would be diverted to my back.

I, too, waited for a medical break through and I'm glad I did.  Seems to me the big question is waiting to see if we are cured.

Offline Israel

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  • Posts: 8
Re: Started Harvoni 3/12/15
« Reply #27 on: March 26, 2015, 12:29:46 pm »
 Hi Sailor - Sorry to hear you're having difficulties with your back.  Hopefully between you and your doctor you can find ways to remedy the pain and/or at least minimize it to the point that you can function "comfortably".  Regarding your difficulty sleeping, I had a similar problem and what has worked for me has been staying off coffee (and anything with caffeine) and reading as oppose to watching TV before going to bed.  The success, Sailor, of the Harvoni treatment is unknown.  Despite the high success rate we may be one of the few who may not make the cut.  This means that all we can do is keep our eye on the ball, be responsible with the program and concentrate on the NOW (family, friends, work, etc).  Tomorrow, God permitting, will come and when it does, we'll deal with at that time.  You hang in there buddy, one way or another, we will beat this thing.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #28 on: March 27, 2015, 07:23:22 pm »
Day 15.  Still no side effects.

Israel, I want to clarify that my sleep problems are caused by my back problem.  I have to change positions every 20 minutes or the pain gets intense.  Today I slept on my right side for an hour before the pain started, so I am improving.  I appreciate your comments about caffeine and other sleep management techniques.  In like coffee and I like to read my laptop in bed!

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #29 on: March 28, 2015, 11:42:44 am »
Day 16

No side effects.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #30 on: March 29, 2015, 04:23:31 pm »
Day 17 - Sorry to be so boring, but again no side effects.  I'm working hard and my back is slowly improving.

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #31 on: March 30, 2015, 01:01:43 pm »
Sailor, please continue to post your "boring" progress.

I've been reading here for over a year, however, I only registered today.

I started Harvoni right after you, March 18, and have been following your posts.

My experience is similar to yours. I had a piercing headache day two and kind of a dull headache for a few days after. Those are the only side effects I've had.

A friend suggested I should log my daily progress and then I saw yours, so similar to mine, that I decided to follow yours instead. Lol.

Thanks to you and all the wonderful other posters here. I'm sure there are many like me who read here for encouragement and never register and post.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #32 on: March 30, 2015, 01:03:36 pm »
I also want to add that I felt better within the first week. My terrible mental fog is nearly gone and the joint aches have all but disappeared.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #33 on: March 30, 2015, 04:38:20 pm »
Day 18 - No noticeable side effects.

I had an interesting call from a nurse working for the insurance company providing my Harvoni.  I am supposed to get a blood test after month 1 to determine if I need to have 12 weeks treatment instead of 8 weeks.  Apparently if the virus is not detectible at week 4, I will stop after week 8.

She said there is not another medicine to use if I am not successful with Harvoni, that I would have to wait for another drug to be developed. 

Getting Well.  It sounds like you had a more difficult time than me getting started.  I'm glad you are OK now.  I think it is useful to note on this blog if you start to experience any adverse effects in the future.  Good luck and thanks for your good words.

It has bothered me that they may stop at 8 weeks and find that the treatment is not successful.  Then I would wish I had gone 12 weeks.  Then I started to think about it.  The insurance company shares the same interest with me.  If the treatment is not successful, then I will have to take another treatment and they will pay for it.  So the logical conclusion that 4 extra weeks beyond the 8 weeks, will not change the outcome if the virus is un-detectible after 4 weeks.

Because, that in my case so far the side effects are virtually non existent, the real and far more important question is will the treatment be successful.  98% odds are not bad, but there is the 2% that is not successful.

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #34 on: March 30, 2015, 07:35:33 pm »
I am on 8 weeks, also. I am F2 with viral load under 6mil.

I test in 4 weeks, too, but if I have the less than 25 detectable copies, I have decided to not worry about not doing more than 8 weeks. That is the protocol.

I have been sick for years and didn't know what it was. I have been diagnosed with rheumatoid,  fibromyalgia (if that is a disease) and have gradually gotten nearly bed fast due to pain and extreme fatigue. This is a miracle for me.

1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Tina30

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  • Posts: 1
Re: Started Harvoni 3/12/15
« Reply #35 on: March 31, 2015, 09:14:11 am »
Hello everyone,
I'm new to the forum but have been reading posts as a guest for 4 years now. I too recently started Harvoni.  Diagnosed when I was 26, not sure how I contracted the virus. Possibly a tattoo I had done when I was 18, or using something of my fathers at age 13 (toothbrush, razor etc.) as he passed at 35 with Hep c and cirrhosis. He was also as alcoholic and didn't know he had the virus. Anyway, I've been extremely fatigued, sore and overall had a feeling of malaise for years, but thought that was all due to working and going to school full time. In 2012 I was diagnosed and 2013 I began Interferon, Riba and victrelis, I cleared the virus and made it to 29 weeks before I had no immune system left and body just could not make it any longer. Relapsed, at 4mo. post treatment viral load up to 6 million. Almost all my hair had fallen out, but I'm lucky that I found out I had the virus at such a young age. No fibrosis per abdom. ultrasound but viral load 7,000,000+ I started Harvoni March 6th, 2015 after 4 mo. of battling with my insurance. Long story short, it was Support Path who helped me with the medication. I'm approved for 12 weeks and going into my 5th week come Monday.

Side effects: Mild headache, off and on nausea but overall, feeling pretty darn good.

Positive results: Sleeping better!!!! Way better!! It is amazing, after suffering from fatigue for years and not really putting two and two together.

 I am so happy to have had this forum to read throughout my treatment with Interferon, but I have to say, Harvoni is AMAZING! This is nothing compared to what I went through in 2013. I wish everyone total SVR, and thank each and every one of you for your posts. I'm ready to live my life to the fullest and have children but wanted to be as healthy as possible first.

Is anyone else on antidepressants? I am on Zoloft and Wellbutrin and am hoping that is contributing to the brain fog because it is still lurking everyday and I'm really hoping after I clear the virus it will improve, but if it's due to the antidepressants I can learn to cope as long as I need them.

P.S. I had to take a leave from my full time job with Interferon and Riba. but with Harvoni I've continued to work. I'm late to work here and there due to exhaustion but I'm lucky to have a boss that is compassionate to what I'm going through.

 

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #36 on: April 01, 2015, 02:39:34 am »
Day 19 - Another day free of side effects.

Another interesting the nurse told me was to change out my toothbrush and razor in the event that I am free of the virus at my 30 day blood test.  There is a small chance one could get infected again.

Getting well and Tina30, you have had a tough time.  I hope your experience with Harvoni is successful.  You deserve it.


Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #37 on: April 01, 2015, 09:18:32 am »
After reading many posts from all the fine folks here, I already had new toothbrushes on the ready. I start toothbrush number three today as well as start week three of Harvoni.

Same side effects for me as for you, none.

It feels like I just came thru a high fever, like a curtain has been lifted.


I am so thankful and wish all the best to you and all who suffer from this terrible disease.

1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Karen3717

  • Member
  • Posts: 28
Re: Started Harvoni 3/12/15
« Reply #38 on: April 01, 2015, 09:43:33 am »
Hi Folks,
I am also new to this forum.  I strated Harvoni on 3/13/15. I am doing 12 weeks (VL-316,000, F2, failed PegIntron/Riba 2001, no chirrosis, Antibody  (+) in 1992 Likley contracted from blood transfusion 1986).  So far so good.  Some fatigue, headaches & insomnia, but totally manageable.  I have BCBS of Texas. Harvoni PA went weel.  I was approved in 1 week.  Signed up online for Gilead's $5 copay card & got it immediately.  VL @ 2weeks is detected but <15.  Cause for celebration!!!

I hope everyone continues to do well!  Harvoni is the HCV bomb we have all been waiting for all these years.  They didn't name that webstite HepCHope for nothing!!
Karen
Transfusion 1982; Multiple accidental needlesticks; healthcare worker
(+) HCV antibody 1991
Genotype 1a
2001-Pegintron/Ribavirin 48 wks. Relapse 2mo post tx
2015-VL 316,000
Fibrosure-F2
Started Harvoni 3/13/15
2 weeks:  HCV PCR <15-DETECTED
4 weeks: HCV PCR <15-DETECTED
8 weeks: HCV PCR <15-DETECTED
12 weeks:  HCV PCR: NOT DETECTED!
4 Weeks EOT: HCV PCR:  NOT DETECTED!
12 Week post TX:  HCV PCR NOT DETECTED!

Offline Karen3717

  • Member
  • Posts: 28
Re: Started Harvoni 3/12/15
« Reply #39 on: April 01, 2015, 09:47:31 am »
Hi Folks,
I am also new to this forum.  I strated Harvoni on 3/13/15. I am doing 12 weeks (VL-316,000, F2, failed PegIntron/Riba 2001, no chirrosis, Antibody  (+) in 1992 Likley contracted from blood transfusion 1986).  So far so good.  Some fatigue, headaches & insomnia, but totally manageable.  I have BCBS of Texas. Harvoni PA went weel.  I was approved in 1 week.  Signed up online for Gilead's $5 copay card & got it immediately.  VL @ 2weeks is detected but <15.  Cause for celebration!!!

I hope everyone continues to do well!  Harvoni is the HCV bomb we have all been waiting for all these years.  They didn't name that webstite HepCHope for nothing!!
Karen
Transfusion 1982; Multiple accidental needlesticks; healthcare worker
(+) HCV antibody 1991
Genotype 1a
2001-Pegintron/Ribavirin 48 wks. Relapse 2mo post tx
2015-VL 316,000
Fibrosure-F2
Started Harvoni 3/13/15
2 weeks:  HCV PCR <15-DETECTED
4 weeks: HCV PCR <15-DETECTED
8 weeks: HCV PCR <15-DETECTED
12 weeks:  HCV PCR: NOT DETECTED!
4 Weeks EOT: HCV PCR:  NOT DETECTED!
12 Week post TX:  HCV PCR NOT DETECTED!

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #40 on: April 02, 2015, 02:55:41 pm »
How are you today, Sailor? Karen?

Hope the back is better.

I am not having the greatest of days. Some of my joint pain is back although not nearly as intense as before starting Harvoni.  I also have a headache although it is tolerable.  My blood pressure is elevated. I was already on blood pressure medication.

The weather is stormy here today which could explain the joint pain and the headache may be explained by the elevated blood pressure.  I'm not ready to call them side effects.


I have read on the forum that it could be possible that the increased water consumption could diminish potassium.  Tomorrow I will shop for bananas and V8 juice as I don't feel like shopping today.

Let me know how ya'll are faring.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Getting well

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  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #41 on: April 02, 2015, 02:59:15 pm »
ps:

I had a dream last night for the first time in years which has to mean I am entering REM sleep to produce a more sound, restful sleep.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #42 on: April 02, 2015, 05:14:27 pm »
Day 20 - No obvious side effects. 

Went to the orthopedic surgeon and he recommended back surgery.  Interesting thin was that my blood pressure was up from about 115/80 to 150/120.  Dr. said it was due to my back pain.  Could it be the Harvoni.

Offline Sailor

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Re: Started Harvoni 3/12/15
« Reply #43 on: April 03, 2015, 11:45:53 pm »
Day 21 - No noticeable side effects.

Offline BubbaT

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  • Posts: 267
Re: Started Harvoni 3/12/15
« Reply #44 on: April 04, 2015, 12:30:40 am »
Yes, the Harvoni caused my Bp to rise near 150/80
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #45 on: April 04, 2015, 01:58:49 pm »
Day 22 - no noticeable side effects.

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #46 on: April 04, 2015, 03:02:40 pm »
I, too, have no noticeable side effects.  The joint pain and headache has passed along with the storms so I guess I'll never know which came first. Lol

Bubba, my BP is still slightly higher but is lowering. Possibly my body, with present BP meds getting used to the Harvoni and I've increased my potassium intake.

Karen, hope you are doing well and that this is a Cakewalk for you as well.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #47 on: April 05, 2015, 01:36:37 pm »
Day 23 - Still no noticeable side effects.  From some of the other comments, it appears that for most, the side defects are negligible.  Let's hope that it continues to be the case.  I will get my blood test in about a week.  That is  the next big event for me. 

I must admit that I haven't been drinking much extra water.  I am so busy with work, managing pain, and preparing for back surgery in about 2 weeks, that I have a hard time altering my habits.  I swear that when this work project is over and my back is better, that my new focus will be exercise and diet.  My wife makes it look easy.  I have read that as one ages, exercise becomes more important.

Getting well:  it didn't occur to me to change out toothbrushes and razors more frequently.  I am going to start doing that. 

Offline Getting well

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  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #48 on: April 05, 2015, 04:20:33 pm »
I'm still same as you in re side effects.

Feeling a little tired today, but just taking it easy and binge watching Mad Men. Probably not a side effect.

I've been changing my toothbrush,  razor, etc,  at the start of each week on Harvoni.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Started Harvoni 3/12/15
« Reply #49 on: April 06, 2015, 12:16:01 pm »
I feel encouraged when I read this post!  Thank you for sharing your progress every day.  I am sorry about your back problems though :(
 
May I ask what time of the day to you all take your Harvoni?

I read that some people take it at night so they sleep through any side affects.
I was also curious how long after "dosing" do the side effects if any, kick in?

Keep posting and thank you
Deb
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #50 on: April 06, 2015, 12:40:46 pm »
Still no side effects.  Better energy today and sound sleep last night.

I take Harvoni in the mornings. I usually get up very early for a bathroom trip, so that is when I take it and then go back to bed for an hour or so.  I do it this way so that the days I need to take Prilose,  I am fasting. Then after one plus hour, I can take my thyroid medication and others.

Sailor, good luck on the back surgery. I have suffered with back problems since I was 19 years old and understand what you must be going thru.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #51 on: April 06, 2015, 05:05:01 pm »
Day 24  -  No side effects.

Getting well - Thanks for the kind words regarding my back.

Debula - I take the Harvoni about 5:00 pm.  I have never noticed any discernable side effects.  I have been told that Harvoni can keep you awake, but I don't have a problem sleeping.  I was worried about the side effects as I have a big work load right now.  I didn't know what to expect and so far it has been a breeze.  My purpose for this blog is to document my daily experiences: good or bad.  So far mine have been good.  Although I know some others are not fairing as well.  Time will tell if it stays this easy. If I experience side effects, I want to do so at night so it may impact my work less.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #52 on: April 07, 2015, 03:01:33 pm »
Day 25 - No noticeable side effects.

I'm going to call the DR. to schedule a viral load blood test. 

Today I pick up the next month's supply of Harvoni.

Offline harvonite

  • Newbie
  • Posts: 2
Re: Started Harvoni 3/12/15
« Reply #53 on: April 07, 2015, 07:26:02 pm »
Hello all,
Have been lurking in the back-round & reading all these posts before and during treatment.
We all collectively have lived with the terminal feeling that Hep C would be our demise, however Harvoni seems to be an actual miracle drug. I am 3 weeks short of finishing my 12 week treatment. My side effects have included: continuous elevated systolic b/p; ringing in my ears; brain fog;strong body odor (like celery); strong urine odor (like asparagus-previously mentioned by another member); early morning headaches.
Energy level had increased steadily while on treatment and core strength is where it was 20 years ago. I was diagnosed late 80's with "non A non B" hep which it was called prior to Hep c being the assigned type. GOOD luck to all of you. Stay Active, stay HYDRATED and work through this!!!

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #54 on: April 07, 2015, 08:11:21 pm »
Still null for side effects. Maybe a little tired today but nothing like the horrendous fatigue I suffered before beginning treatment. I wouldn't even notice this tiredness if I hadn't experienced the fatigue lifting after I began treatment.

Once again,  we are experiencing stormy weather this week in my neck of the woods so I don't know if the tiredness is from the medication or the weather.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Karen3717

  • Member
  • Posts: 28
Re: Started Harvoni 3/12/15
« Reply #55 on: April 07, 2015, 09:52:16 pm »
Hello,
Haven't been on here for awhile, so thought I would check in.  Good to hear most everyone is doing well.  I started my 4th week on Harvoni last Friday. I will have 4 week labs done this Thursday.  I don't expect anything but more good news! (2 week labs showed <15 but detected).  I do have to say I've been quite fatigued while on treatment.  I'm normally like the energizer bunny, but not so much lately.  I work full-time and try to swim laps 2-3 times a week.  I also do all my yard mowing,etc so, I'm struggling a bit to try to keep going at my normal pace.  Other than the fatigue, I've had a few headaches, but only one bad enough to take a Tylenol.  So guys, we are 1/3 of the way through this and I'm hoping all continues to go well.  I am a bit concerned about the B/P elevations that some are having.  Did you guys have normal B/P prior to Harvoni?  I would hope that this would resolve after completing treatment.

Karen
Transfusion 1982; Multiple accidental needlesticks; healthcare worker
(+) HCV antibody 1991
Genotype 1a
2001-Pegintron/Ribavirin 48 wks. Relapse 2mo post tx
2015-VL 316,000
Fibrosure-F2
Started Harvoni 3/13/15
2 weeks:  HCV PCR <15-DETECTED
4 weeks: HCV PCR <15-DETECTED
8 weeks: HCV PCR <15-DETECTED
12 weeks:  HCV PCR: NOT DETECTED!
4 Weeks EOT: HCV PCR:  NOT DETECTED!
12 Week post TX:  HCV PCR NOT DETECTED!

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #56 on: April 07, 2015, 10:56:27 pm »
I was already on blood pressure meds but BP was controlled. I'm considering adjusting BP meds thru treatment.  I'll speak to my primary next week concerning this.

On a side note, I have increased my intake of  potassium rich foods for this reason.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline harvonite

  • Newbie
  • Posts: 2
Re: Started Harvoni 3/12/15
« Reply #57 on: April 08, 2015, 12:14:23 pm »
Re: elevated B/P, I have had occasional high b/p but never on a daily basis like I have during Harvoni treatment. I will wait and see if it continues after treatment and then determine what to do. On a side note, I was told by the pharmacist at my Drs office after an extensive review of diet and supplements to avoid potassium since they were worried about kidney problems while taking Harvoni. All labs have shown normal function throughout treatment, and I'm sure over-hydrating helps clear the drug from the liver/kidneys. Hope we all don't end up needing heart valve replacements :-\

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #58 on: April 08, 2015, 10:30:02 pm »
Day -26  Still doing fine. 

I had blood taken today and received a call that my liver functions were normal and that another test that looks for anemia and red blood cells was fine.  I have to wait a few days for the viral load.

I am going to get a copy of the test results.  I haven't had a normal reading for 30 years.  I want to check it against some of my old reports.  It is encouraging.

Getting well, Harvonite, and Karen 3717 ---I've been reading your posts and it sound like we are on the same track.  Good luck.

Offline Getting well

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  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #59 on: April 09, 2015, 10:16:48 am »
Mornin' all. I am into my fourth week and still good.

I go next week for blood draws and will post results.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #60 on: April 09, 2015, 04:14:14 pm »
Hi Everyone,

I just read all the recent posts here, it's good to have company going through this.
I started Harvoni on the 16th March, so have done 3 weeks. To answer a couple of people's questions: I take it in the morning.The side effects do'nt obviously follow taking the pill for me 
After one week, my liver enzymes were completely normal again. My doctor said that's typical of his Harvoni patients. I don't have a viral count yet.
My systolic blood pressure is up about 20 points from normal. I'm doing well except for becoming extremely short-fused. The other side effect is fatigue in the day and wide awake at night. The first week or so, I slept a lot, then suddenly, I was hyper and irritable.
But basically, I'm having an easy time so far (unlike my poor housemate who has to put up with me  :-[), I hope it keeps on like this, only without the temper. I hope everyone has good results, I'm still kind of amazed that this came along.
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #61 on: April 10, 2015, 12:33:23 am »
Day 27 - I had a migraine headache today.  However, I don't know what to blame it on.  Next week I go to get a second opinion on my back and probably surgery right after.  So my back is killing me. 

Hello Kauri

Getting well - good luck with your blood tests.

I'll post my viral load count, maybe tomorrow.

Offline GLCII

  • Member
  • Posts: 127
Re: Started Harvoni 3/12/15
« Reply #62 on: April 10, 2015, 12:28:07 pm »
Hello All

I saw the title of this post and thought I would drop in since I started the new Tx on 3/12/15 myself. I only wish I had started taking the pill at Midnight instead of at 12:00 Noon. Looking back, I don't think I did myself a favor by starting at that time. I actually hit the ground running and feeling good originally. Now that I'm 4 weeks, or 30 pills, in to it, I'm feeling Rough! It's not as bad as the other 3 treatments I did but doe's seem to build up in the system.

Anyway, Good Luck Everyone.
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #63 on: April 10, 2015, 04:41:33 pm »
Day 28 - Had a good day.

Offline Ledoc01

  • Member
  • Posts: 37
Re: Started Harvoni 3/12/15
« Reply #64 on: April 10, 2015, 05:51:48 pm »
Glad to hear your side's are minimal Sailor. Tough gig with the back..

I had my neck fused 3 years ago and my lumbar fused a year ago. FWIW, I'd finish the HCV tx first. Everybody's different but that lumbar thing kicked my rear.

pain sux in any event... best wishes


Offline kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #65 on: April 10, 2015, 06:23:21 pm »
Hi Sailor, hi everyone,

Thanks Sailor. Pain certainly does suck, and I hope you get real relief, real soon.
As I posted, I've been having anger bursts. My son, whose on the receiving end, googled 'Harvoni irritability' and found a bunch of entries under 'Harvoni RAGE'. I wonder if anyone else on here is having this problem? I did see some comments earlier on, but would like to hear more about whether it eventually goes away, or just not to feel like the lone person that Harvoni turned into a monster  ;D
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #66 on: April 10, 2015, 07:07:49 pm »
Hi,
I  googled 'Harvoni rage' myself and found only refs to 'riba rage'. So maybe my son was confused by that. (Don't want to make false accusations)

Kauri
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #67 on: April 11, 2015, 01:45:29 pm »
Day 29 Another good day.  Didn't get my viral load count, maybe Monday.  Obviously, I'm very curious to know the results.

Thanks all for the comments about my back.

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #68 on: April 11, 2015, 04:25:56 pm »
Still good for me, too, although I cannot deny the headache, tinnitis and elevated blood pressure.  However, these sides are nothing compared to what I went thru before beginning treatment. I still feel better now than four weeks ago. I have 31 pills left. YAHOO!
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline 41HAPPY61

  • Member
  • Posts: 10
Re: Started Harvoni 3/12/15
« Reply #69 on: April 11, 2015, 06:27:30 pm »
Hey there - I am a 61 year old with Geno Type 1b. I became infected in 1974 when I had a couple of surgeries and received several transfusions. I have had this too long!
I started 8 week treatment plan today. I am very excited and looking forward to a better quality of life.

Today is Day 1 of Harvoni treatment.

I am also nervous about treatment, but feel very positive about this journey.

Looking forward to participating in this forum.

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #70 on: April 11, 2015, 06:59:03 pm »
Getting well.  I should mention that I have tinnitus, too. However, I had it before I started treatment.

I'm going another blood pressure reading next week when I see the back surgeon.

41happy61.  I shared the same nervous anticipation before starting treatment and have been pleased with how easy it has been.

Offline kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #71 on: April 11, 2015, 07:04:35 pm »
 41HAPPY61 welcome to the forum. I'm only 4 weeks in, and already feeling a better sense of well-being.
On Monday, I'll have my first quantification since starting, but my doctor won't let me know the results until I see him 10 days later. I could object, but I think I'll just be patient.
I was having trouble sleeping, but I accidentally discovered that if I slather petitgrain essential oil on the back of my neck and temples, I sleep solidly all night. Relief!
Hope everyone is having a good day.
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #72 on: April 11, 2015, 08:58:05 pm »
While I've had the ear ringing for years, probably due to years of NSAIDs, it is more pronounced at different times thru the day now.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #73 on: April 12, 2015, 01:52:27 pm »
Yep, I've had tinnitus for years. Has anyone heard of it going away with Harvoni?
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline Sailor

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  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #74 on: April 12, 2015, 02:36:34 pm »
Day 30 - No problems.  Slept really well last night.  I, too, wonder if the ear ringing will stop when the treatment is over.

I do recall reading somewhere, that ear ringing is a result of aging.  I just read about it on the internet.  Mine is a subtle high pitched sound that I am aware of occasionally.

Offline 41HAPPY61

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  • Posts: 10
Re: Started Harvoni 3/12/15
« Reply #75 on: April 12, 2015, 03:10:40 pm »
I used to experience some ringing in my ears when I was on a Sulfa drug. Hope that goes away it can be annoying. Goodluck.

Offline Sheila

  • Newbie
  • Posts: 1
Re: Started Harvoni 3/12/15
« Reply #76 on: April 13, 2015, 11:21:43 am »
I started Harvoni on March 9 and the virus is now NOT DETECTABLE. I haven't experienced any side effects. It's a miracle. I was diagnosed 17 years ago and given two very important recommendations from my doctor, who agreed with me that at the time, the treatments were worse than the disease. I quit drinking and started making a real effort to live healthier. He also told me to keep the best health insurance I could afford, because he was confident, that if not an actual cure, that better treatments would eventually be available. And here I am... took that advice and considering myself free of Hep C.

Offline GLCII

  • Member
  • Posts: 127
Re: Started Harvoni 3/12/15
« Reply #77 on: April 13, 2015, 11:40:51 am »
Sheila

Good for you!!! That's exciting news.

Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #78 on: April 13, 2015, 05:20:07 pm »
Day 31 - No problems.

Sheila, Congratulations on your test results!

My reports are always about the day before.  But today I'm going to cheat and share some news about today.

My Dr. called today and told me I AM 0 DETECTABLE!

THIS IS AS EXCITING AS THE DAY I GOT THE RESULTS FROM MY FIRST BIOPSY AND DISCOVERED THAT I WAS ONLY F2 after 30 years of hep c.

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #79 on: April 13, 2015, 05:26:28 pm »
CONGRATULATIONS!!!!!!!!!!!

Same minimal side effects for me. I'm having some rheumatoid flare up (wrist, elbow, knee, etc. pain).  However,  we have stormy weather again so who knows?

I have my four week blood draw on Thursday and hope for the same results as you.  Once again, congrats.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #80 on: April 13, 2015, 05:36:14 pm »
ps:  good luck to the rest of you. Hoping good things for you.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #81 on: April 13, 2015, 09:58:27 pm »
HEY! HEY! SAILOR! How does it feel to be virus-free? That is such good news, Calls for celebration.
Getting Well and me both have our 4 week draws this week. I had mine today. Wondering....
My blood pressure's still elevated and my sleep needs help, but otherwise, I have no complaints.
Hope everyone is having a good day.
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline kauri

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  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #82 on: April 13, 2015, 10:10:15 pm »
GLCII ...I notice you were also UNDETECTED at 4 weeks. And you had a high count, like me. And previous treatments. So, that seems very encouraging, and for me as well.
You said things were getting rough? I'm sorry to hear that. How are you doing now?
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #83 on: April 14, 2015, 10:42:30 am »
Threw away my first empty bottle of the miracle cure this morning.  One more to go.  Hash tag...who knew it could feel so emotional? Lol.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Started Harvoni 3/12/15
« Reply #84 on: April 14, 2015, 10:46:42 am »
Congratulations SAILOR!!  I am very happy to hear that!! woot woot!!

Also congrats to Getting Well for completing 30 days?  of the miracle cure!!

I hope to follow you very soon!!
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #85 on: April 14, 2015, 10:52:23 am »
Twenty eight days. Each bottle if for four weeks, not a month.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Started Harvoni 3/12/15
« Reply #86 on: April 14, 2015, 11:08:01 am »
ahh well still good at 28 days!  That seems like a lot of days to me since I haven't started yet.  I hope to be starting in the next few days.  I just got approved yesterday and am now waiting for the specialty pharmacy to call me.
Woo hoo for 28 days of dragon slaying!!
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #87 on: April 14, 2015, 02:18:56 pm »
Day 32 - Again no problems. 

We have a group of folks who are all on the same track and sharing a similar experience with Harvoni.

I really wish the best of luck to those who awaiting their results. 

We won't really know until some time after we finish the course of treatment, but we seem to be on the right track.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,511
  • Get tested, get treated, get cured, fight Hep c!
Re: Started Harvoni 3/12/15
« Reply #88 on: April 14, 2015, 10:03:33 pm »
Congrats Sailor!

147 days down 21 days to go for me
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 Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #89 on: April 15, 2015, 04:27:19 pm »
Headache, joint pain and snotty nose. Lol. But not near to the degree I had these same symptoms before beginning treatment. Plus, it's storming here, again, so I still don't know if it could be weather related instead of side effects.  I do so hate to whine but I have been sick for so long and sometimes it seems like I'll never be better.

But, 27 more days and I will  (hopefully)  be done. Blood test tomorrow.

Ya'll hang in there, too.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #90 on: April 16, 2015, 07:04:49 pm »
Day 33 - No problems.

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #91 on: April 16, 2015, 07:09:13 pm »
Day 34 - Today I saw a back surgeon for a 2nd opinion and I don't believe I need surgery which my wife and I are very happy about. 

On the way out I asked them to read my blood pressure and it is back to 120/75, my normal blood pressure.  Earlier it was elevated and the Dr. said it was because of my back pain.  Who knows?  But it is back down now.

Good luck Lynn K.  It  has been a long haul for you.

Getting well, I hope your test results are good.

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #92 on: April 16, 2015, 08:26:33 pm »
I'm so happy for you about your back. I'm sure you are already aware, but, physical therapy, chiropractic services and specific neck and back exercises may help alleviate some of the pain. There is no single cure all but these things do improve my life. Thirty years ago the neuro surgeon told me not to come back until I wanted to have surgery done. Thank God, I haven't and I am still walking. That is my guage. Lol

I've had a couple of puny days. Don't know if it's side effects, weather or me being a big baby. 

Lynn, I am trying to emulate your strength of character but I am failing. Just can't seem to shake feeling really bad.

But, got my blood drawn and will hope for good news in three to five days.

Only 26 days to go.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #93 on: April 17, 2015, 06:24:16 pm »
Day 35 -  No adverse effects today.

Good luck on your test results, Getting well.

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #94 on: April 18, 2015, 12:55:20 pm »
Day 36 -Another day filling fine.

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Started Harvoni 3/12/15
« Reply #95 on: April 18, 2015, 06:29:16 pm »
It makes me happy to see so much good news. :)
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 kauri

  • Member
  • Posts: 21
Re: Started Harvoni 3/12/15
« Reply #96 on: April 18, 2015, 06:50:24 pm »
Day 33 for me. I can't say I have a single symptom that I can blame Harvoni for, anymore. It seems to make things I usually have, just a little bit worse, but really, I'm doing fine.
About the high blood pressure. My doctor said a number of his patients have had high blood pressure Harvoni. Her'e my experience with it. Usually my blood pressure is low..110/80 or so. In week 3 and 4 I was measured at 140/? (dont remember the diastolic). I was also having trouble sleeping. It was a stressful time at home. Then things settled down, and I crashed into a long sleep. When I woke, my blood pressure had plummeted, lower than normal, to 88/59 with my heart rate higher than normal.
While I do have unstable heart function, I've never measured these extremes before. Now my concern is whether my heart will be OK on Harvoni for so long.
I do have heart failure, as yet undiagnosed, so this won't apply to others who don't.
Otherwise, it's good to be going through this in a group together. Hang in there GETTING WELL, I hope you discover something that helps.
GT !a, likely infected '77 or '83 (needle or tattoo)
DX '95
'95 Interferon stopped bec. low white blood cell count
Fibrosis: F3MANY
Necroinflamm: A3SEV
Viral load at beginning of treatment: 27 million copies or 10.3 million IU/mL
HARVONI begun: March 17, 2015 12 week course

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #97 on: April 18, 2015, 09:49:36 pm »
I am worse, yet again. I now feel no better than I did beforenL starting treatment. I am also itching more than I had previously. Rash on trunk and palms. I just took 25mg Benadryl to see if that helps.

My best to all.

I have only 24 more pills and then this will, hopefully, be over.

1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

Offline Sailor

  • Member
  • Posts: 76
Re: Started Harvoni 3/12/15
« Reply #98 on: April 19, 2015, 06:17:45 pm »
Day 37 - I'm starting to anticipate finishing treatment.  I guess I get another blood test and if I am still un detectable, that I stop after 56 days (8 weeks).  That could mean less than 20 days to go.

I continue on with the experience of very few if any noticeable side effects.

I really hope, Getting well, that you start feeling better.  You, too, don't have long to go.  Hopefully, your test results will be good and that will help.

Offline Getting well

  • Member
  • Posts: 47
  • Unsure when acquired
Re: Started Harvoni 3/12/15
« Reply #99 on: April 19, 2015, 08:06:42 pm »
Welp,  I'm feeling a little better. Most of the pain is gone.  Still some headache and stomach distress but not like the past few days. Still have rash and itching.

I should get my test results this week. Keeping fingers crossed. Oh, the anticipation is gruelling.  (Is that spelled with one l or two?)

Hang in there folks. No matter where we are in treatment we are closer than we were, even for the few who have not gone on to undetected.
1a
Began Harvoni 03/18/2015
AST 90
ALT 90
VL 1.9 mil
F1-F2
Never treated before


UNDETECTED AT 4 WEEKS
on 8 week treatment

 


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