Is mild to no side effects on Harvoni normal?

[Hepcat7]

Hi all , I'm 58 very active and have a 3 on the fibrosis test. VL just under 6 million.Platelets at 35 and have had horrible aches, pains, stiffness, bad cramps and leg itching for the past few years especially. I most likely contracted the virus in 1963 during full transfusions for emergency surgery. (50+ yrs. ago)
I was pulled off of triple therapy 2011 before I even started due to even lower platelets then I have now.

    I'm concerned about how well I'm tolerating this medication. I was expecting worse as I have been extremely sensitive to any and all meds most of my life.
The first week I had some trying GI problems and some headaches and dizziness, second week ,Im feeling great ....better than I have in a long time. Fluid retention almost nil even with lack of sleep which usually triggered mild ascites between 5-7 lbs of abdominal water weight.
    Instead of dreaded side effects , I'm feeling revitalized with none of my usual symptoms and everyone says I'm looking healthier,younger, etc.
Is this normal or is it just that I have help fighting this thing and the increase in wellbeing is a result of this.
    I will be doing my 4 wk. test next week and hopefully will show the same positive results that many others are reporting. Any insight using your collective experience is appreciated.
   Good luck to all here achieving and maintaining a result of SVR.
Thanks
Hepcat

[Hepcat7]

Hi Linda, I thought my long time damage caused my side effects. Why does your husband still need a new liver? What is his meld score? I only have one friend who needed a liver and that also was due to his exposure to silica dust on his job of 20 yrs or so. He was a union stone cutter, polisher and stone mason at different times. He developed tumors sometime after treatment (interferon based) and has been gratefully living with his new liver for 10+ yrs. I assumed that my side effects were hard because of my fibrosis. My Pugh score is 5. Meld would be similar. Perhaps it's low platelets that trigger the side effects. The liver does heal somewhat if given a chance and a lot of time. Of course when the big "C" appears it's a different story. I'll pray for him. Good luck to all with winning their fight against the dragon. Heal well and live long.
Topcat (formally hepcat)
Oh by the way I finished my 12 weeks this past Monday.  Time will tell if I'm SVR by New Years week. Say a prayer for me too.  

[Hepcat7]

Hi Pooh , Thanks for the reply. I am indeed treatment naive as they stopped me before even the first dose. My GI specialist at that time lost his nephew on treatment who also had extremely low platelets and he stopped me before I started and then he retired. He was his nephews specialist and I think it was too much for him and he blamed himself.You are also correct about stage f4, I am at the threshold of 4 but I like to think optimistically, I usually write 3-4. Anyway, I'm on the right length regimen. Thanks again for your reply. I was really starting to think I had my settings wrong marked private or something but figured it would help someone in the future.
Hopefully Soon to be TopCat 7

[keepingOnkeepingOn]

Wasn't that for those who are NOT treatment naiive?

[pooh55811]

Glenn failed a different treatment regimen than the treatment regimen  Hepcat failed.  (At least, from Hepcat's posts, it appears Hepcat treated with Inf and Riba.)

If you look at my post above, it contains the current AASLD treatment regimen for a treatment experienced person who has failed Interferon and Riba.

Jimmy posted the regimen for Glenn's situation, which is different from Hepcat's situation.

[virt111]

I had MINIMAL sides that were only apparent during the first week of treatment. Actually, I felt better on Harvoni than I've felt in years.

Undetected at the end of treatment and doing the wait game until mid September.

Best wishes

[patra_]

Didn't the update for AASLD that Jimmy posted this past week for Glen show that for Cirrhotic people 24 weeks of Harvoni WITH RIBA is the recommended treatment?  As Jules said, please talk to your Dr so he/she can check into the recommendations and add the extra weeks AND RIBA, if necessary.

Blessings,

Pat

[Carlhcv]

I had several side effects on Harvoni but all were mild. And it worked! SVR 12 weeks EOT. :)

[keepingOnkeepingOn]

My Vit. D level went down after treatment on S/O. I went on the once a week Vit. D prescription but had a reaction so I stopped.

My platelets are now at 38. I worry about it but now I see others are at low platelets and all it's symptoms.

Hoping you SVR!

[jules2551]

Great catch Pooh!  Yes you should definitely be doing 24 weeks under the guidance of a Hepatologist since you are cirrhotic.  You need to call your Dr immediately to get your dosage extended.  Your Dr is not following the above guidelines that Pooh stated.

Let us know how you make out!

Jules

[pooh55811]

I don't know much about the side effects of Harvoni since I treated with Incivek, Interferon, and Riba. However, I did notice a couple of things in your posts on which I wanted to comment.

First, from your posts, it seems that you failed Infterferon and Riba treatment a few years ago. It is unclear to me how many times you have treated, However, if you did treat once even, and failed, then you are treatment experienced.

Second, you mention in this post and in other posts several problems/complications that you have had:
Ascites
Platelets of 35
Esophagel Bleed

You state that you are have Fibrosis Stage 3 (on the fibrosis test), but,  if you have the complications that you have mentioned, then you obviously have Fibrosis Stage 4 (Cirrhosis). You also mentioned your MELD score was 10, which means you have Cirrhosis.

I only mention this because it is important in terms of your treatment length of time. Plus, your doctor should be able to recognize from your symptoms and complications that you have Cirrhosis.

You state that you are treating for 12 weeks but, if you have Cirrhosis and were a prior treatment failure, you should be treating for 24 weeks.

Below I have copied and pasted the AASLD treatment guidelines for those who have failed prior treatment.

In addition, since you have Cirrhosis (which appears to not be really well compensated) I hope you are under the care of a very knowledgeable and experienced Hepatologist at a large university affiliated medical center, preferably a transplant center. He/she would know the most about your condition and be able to competently manage your care.


Treatment Guidelines:
From AASLD: (American Assoc. for the Study of Liver Diseases)

RETREATMENT OF PERSONS IN WHOM PRIOR THERAPY HAS FAILED

Recommended regimens for patients with HCV genotype 1a or 1b infection who have compensated cirrhosis, in whom prior PEG-IFN and RBV treatment has failed.

Daily fixed-dose combination of ledipasvir (90 mg)/sofosbuvir (400 mg) for 24 weeks is recommended for patients with HCV genotype 1a or 1b infection who have compensated cirrhosis, in whom prior PEG-IFN and RBV treatment has failed.

Rating: Class I, Level A

Daily fixed-dose combination of ledipasvir (90 mg)/sofosbuvir (400 mg) plus weight-based RBV for 12 weeks is recommended for patients with HCV genotype 1a or 1b infection who have compensated cirrhosis, in whom prior PEG-IFN and RBV treatment has failed.

Rating: Class I, Level B

http://hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed


In addition, I agree with Jules, that if you have not had your Vit D level checked, then you should have it checked. A low Vit D level can negatively impact your chances for SVR. Your Vit D level should be at least 40 (according to my doctor). (The NIH states it should be at least 50 in order to maintain bone and overall health.)

Here is some info about Hep C and Vit D:

http://www.ncbi.nlm.nih.gov/pubmed/22871501

http://www.ncbi.nlm.nih.gov/pubmed/24124339

http://www.healio.com/hepatology/hepatitis-c/news/online/%7Bc3177128-b69c-4148-93f0-8ce6f4426ddd%7D/low-vitamin-d-increased-risk-for-advanced-liver-fibrosis-decreased-svr-rate-among-patients-with-hcv

http://www.wjgnet.com/1007-9327/pdf/v19/i35/5917.pdf


Wishing you the best with treatment and wishing you SVR!

[jules2551]

I am on week 11, out of 24, and was thinking along the lines as you is the Harvoni really working?  After the horrendous tx of triple therapy, Vic, I thought to myself this can't be working.  But after my 3 week test I was "not detected". I was in total disbelief!  The first week I had acid reflux but that left quickly.  Since then I only have insomnia and I can deal with that.  When I was on triple therapy my platelets were 31 so my Dr stopped tx at 36 weeks when the game plan was for 48.  I had them checked last week and they were in range but low around 159 I think.  Sorry don't have numbers in front of me.  Also had my Vit D levels checked because I knew it was vital to becoming SVR.  Well they were within range but on the low side even though I live in FL and was taking supplements.  A really knowledgeable, nurse, and friend of mine on this forum, Pooh, told me to increase the supplements because I need my numbers in the 40's.  So I increased my supplements from 2000 daily to 6000 per day.  So I will talk to my primary this week about the Vit D levels.  So please get that tested if you haven't already.  

Please keep us posted on how you are doing!

Pooh...if you read this please chime in about Vit D levels

Jules

[patra_]

No personal experience on Harvoni, BUT I have seen several entries that stated pretty much what you said you have experienced so far.

Don't lose hope of more 1st person responses.  It is a holiday weekend, and I have seen participation drop during most holiday weekends.  Life getting in the way, which is a good thing!

Hang in there.  Your 4 week Labs should tell the story, as 48 said.

Blessings,

Pat

[48weeks]

While Harvoni was my 5th treatment attempt, my vl was 600,000, platelets were low, but not as low as yours, my enzymes were not quite double normal and my liver biopsy showed no cirrhosis.  I suffered relatively no side effects and almost questioned if my pharmacist gave me the right meds. Then at week 4, my platelets were in the normal range, my liver enzymes were in the normal range(this never happened for me before even on Incivek), and I was undetected. I was shocked, in June I found I had reached SVR, and I'm still stunned after having this disease for so long.

[linda803]

my husband started harvoni December 2014, for12 weeks, the doctor never did any tests till he was finished  his pills and with no side effects  war so ever he was cured  a miracle  for sure, but he still needs a liver