Post Harvoni Weight Gain

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Lana Says:


Having a big problem with weight gain, post Olysio/Solvaldi 12-wk. tx, and 26-wk Harvoni tx. Clear for two years. Is anyone else experiencing this? I'm getting so tired of my doctors telling me to diet, exercise, and drink water. I'm doing that. Exercise is hard because of the edema in my legs, ankles, and feet. Suggestions? Will be seeing my liver specialist May 18th. Thanks.



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1
Verwon Says:

Have you tried seeing your specialist sooner? It is hard to say what might be causing such an issue, if you're done taking the medication.

How long ago did you finish your course of treatment with it? The FDA and most patients list the typical side effects as possibly including nausea, dizziness, headache, and joint pain.

Are you currently on any other medications? How much have you gained? How bad is the edema?

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Lana Says:

Re: Your questions, I'm on a 6 mo.visit plan with my specialist. It's a 4-5hr. round trip. I finished the Harvoni about 2 yrs. ago, have been clear since. I was at 4th stage liver failure when I started. Heart is good, bp,is low, I do live at 5,500 ft., and that could be part of the edema issue. I've gained 70 lbs in 2-yrs. That's a lot! During Harvoni I wasn't nauseous, didn't have headaches (maybe 4 during all of the tx, 36 wks total, including the 12 wk Olysio/Solvaldi tx, that I failed). Have some joint pain now, but didn't during tx. Had a bit of insomnia, and that persists a bit. The edema is not bad enough that I can't stand or walk, after sitting, even in a recliner, when I get up, it hurts my feet. Walking it out helps. Taking: Spironolactone 100mg, Furosemide (lasix) 40mg, a mild natural thyroid, Naturthroid 1/2 tab., and 1/2 tab of Nadolol (to keep bp on lower end, for portal vein pressure), and lots of vits. and supps. All approved by my docs. No diabetes either. Plus fatigue is a real issue. Bloodwork next week, maybe that will give them some help figuring this out. Tired of feeling awful. Contracted HepC 50 yrs ago, had it for 48 yrs. Diagnosed in 2005 with having the antibody, 1st doc didn't think I had the virus....I did. Got another opinion in 2007, and started treating with a naturopath and chemist/diatician. They kept me alive until I could qualify for help. Couldn't get ins., due to pre-existing.... same as many people.


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Artist Says:

I have gained 20 pounds since starting the harvoni and my weight continues to climb. I exercise, drink water and watch what I eat. I have been off the harvoni since April, was told the side effects (many of which they don't post) would take several months to disappear.

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Kim Says:
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Yes me to. My thyroid is overactive and my abs. Lymphocytes are higher every blood draw. I'm in so much all over pain. Sore mouth. And can't sleep. 19 months post harvoni

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5
Kat Says:

Re: Lana (# 2)

Hi Lana. I had hep C for 46 yrs..By the time I was diagnosed in 2007 I already had Cirhosis and Cryoglobulemia, severe Peripheral Neuropathy in my left hand and feet and a nerve-muscle condition called Mononeuritis Multiplex.. and Vasculis. I saw a rheumatologist in TO for yrs who only prescribed prednisone. They prescribed lyrica, gabapentin and all kinds of awful anti seizure drugs that did not help and had terrible side effects. Seems the liver Drs dont prescribe anything for pain Its up to your family Dr. I was finally prescribed hydromorphone by a pain specialist because my pain is so severe. In 2008 I had 3 bladder tumors removed and got Drop Foot in my left foot and needed a leg brace to walk. I recovered to eventually just needing a cane..In 2013 I had another bad flare up, I needed 3 infusions of a chemo drug called Rituximab. I was in a walker with a leg brace.and needed physio therapy and home care. My hair fell out but I recovered with a lot of will power and therapy. In 2016 I developed a blood clot in my portal vein and needed to do 6 months of Heprin blood thinner shots into my belly..The clot is now smaller but still there Jan 2016.I went on 6 months of Harvoni...I finished June 2016..My weight dropped to 114 lbs while on the Harvoni I weighed 120 for yrs..In the past year Ive gained 12 KILOs!! Im 63 and have never been this heavy..I weigh 63 KILOS!! I havent changed what Im eating,,I actually am eating less because of my G.I. pain. Nothing fits I thought I had a thyroid problem..or hormonal issue....Ive never had as many migraines in my life,, and they last 3 days.,,sometimes two a week. Im also extremely tired all the time but I cant sleep! I get hot flashs. sweating, and chills.. I have severe G.I. pain after I eat..My nerve pain in my feet and hands is worse and now both shoulders are extremely painful. I cant reach or raise my arms. I cant braid my hair! Im super depressed and just feel awful!. I just want to lay down!

I've lived with Hep C for most of my life, Im use to being in pain, Im very independent as I live alone on a farm, I have animals to look after and need to be mobile..I too live 3 hrs one way from my Dr in TO.. 6 plus hrs per visit! I find it discouraging to drive 6 hrs only to see a new resident Dr for like 3 minutes! All he said was'' yes alot of people say weight gain is a Harvoni after affect..youre fine'' see you in 6 months???.. When I mentioned my shoulder pain he said see your rheumatologist... But my rheumatologist told me I was ''Cured'' of my vasculitis, and Cryo..when I finished the Harvoni almost 2 yrs ago? Now this guy says no Im cured of the HepC but not the complications from it..i understood that the nerve and muscle damage may not be reverseable But I had no idea it would get worse! My left foot and hand are totally useless and now Im losing control of my right hand. Im terrified, because..I'll be totally disabled without it.

My family Dr died The pain specialist retired and living in a rural area with a Dr shortage I was seeing resident Drs at Barrie Family Teaching Unit after being there 4 yrs and being the patient of 2 Drs who graduated after 2 year terms. I saw a new Res. Dr. one time and was immediately cut off my pain meds!...she said my U/A showed a drug called methadone in it?? which was totally impossible! its a drug for treatment anyway..wouldnt have helped my pain?? 2 yrs before. a sample had come back wrong but it was a lab mix up....Im 63 yrs old and was on hydromorphone for 8 yrs. Now Im just on Nadol 40 mg for varacies and a blood pressure med for portal hypertension, no prednisone for 2 yrs now..My pain is unbearable!! I have to buy whatever I can now from friends and family..Its NOT RIGHT that they can do this!! When I saw the new liver Dr Resident on May 24 and I told him.. he just shook his head..and said that was crazy?? He seemed to not have even read my file.....he tried to say my bloodwork was fine too....meanwhile I hadnt had it evaluated in a yr?? They rush us out in less then 3 minutes. They never seem to ask questions.. I feel like they dont even care. I've not seen my main liver Dr, the one my appointment is made with, for 4 yrs now. Every 6 months its a new student Dr..who seems to just know my name....sorry for the long post and rant...its so frustrating to live with a chronic illness for so long.. Dont get me wrong Im really grateful for being treated and be hep c neg but Harvoni isnt without side effects..we werent made aware of!!! I havent seen a family Dr in nearly 2 yrs because there arent any up here,,plus Ive given up on Drs,If a resident noit even a licenced Dr yet... in her first week of residency, can take a severely disabled person in extreme pain off the meds Ive been on for 8 yrs. Theres something wrong here... I'm sick of seeing resident Drs!! I was told I had rare complications of Hep C but I cant even see a real Dr??

Back to the Harvoni..It does kill the Hep C virus but the AFTER treatment side effects need to be known..Its been 2 yrs since I finished my 6 month Harvoni treatment and my Cryo and nerve muscle damage is getting WORSE not better..Not to mention the huge weight gain migraines. fatigue. depression and other issues..One lady posted she would rather have hep C then feel the way she does now. Its called, quality of life...whats worse?? Sorry for the long post...just so tired of feeling sick and being in constant pain! I AM grateful for the Harvoni treatment and being Hep C neg..but Harvoni is NOT without side effects AFTER treatment. And we need to be heard.

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Aude Sapere Says:

Heya,Im clear about 20 months & 1 thing the chap in the Hospital told me was that there will be weight gain. I of course didnt care, i wanted to be cured as i was coming close to the 40 mark which is when the hep can become aggressive. Now i have gained a bit of weight but its starting to settle down now-I can honestly say that since i started drinking water first thing is when i started noticing a difference.But i truly think no exercise or diet is goin to sort this until our metabolism stabilises, but we can prepare for this by just not over doing it.Just eat what we'd eat before this..I wish you well & am really happy your *cured*

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Lou Says:
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Re: Kat (# 5)

Hi Kat,hope you are feeling bit better !im in aust im also in my 60s in hcv pos geno 3 with hi VL im sill F1 just ,i saw a liver dr last week im supposed to.start epclusa next week 12weeks of 1 pill a day i.think same as harvoni that u had ,the dr assured me very rare to get side effects ,now i know thats not true iv heard and read some disturbing stories ,they woild not evan listen to me when i mentionef this ( nurse & dr )they said its so easy mmm im wondering if they get paid a commision if someone starts tx? I also have copd which is knocking me about a bit atm ,i asked about doing tx with copd they said dont worry about it .im really confused about starting treatment and maybe gettimg sicker then i already am .im 65 now if i was 21 maybe feel different about doing it i already have back neck pain.and dont sleep well plus depression sometimes.any thoughts or opinion would b greatly appreciated thanks hope your improving a bit.

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Nathalie Says:
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Re: Lana (# 2)

Yes. Lana. I've finished Harvoni treatment 2 years ago. I gained weight immediately. Feel bloated and have had diarrhea since. I was always the same weight and never had bowel problems. Now I'm worse off than before. I can't lose weight. No one knows how to stop the diarrhea. I regret it.

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