6 weeks into Harvoni

[kwsmithphoto]

Hi. I've been a lurker here on and off for months and learned a lot about managing side effects (thank you). I was diagnosed hep c chronic about a year ago, though I knew I've been positive for it since the mid-1990's. The specialist used my genotype to prescribe Harvoni. I didn't get any meds until January, because of resistance from my ins co, citing a LACK of cirrhosis or fibrosis. The pharmacy fought this, prevailed, and I received 2 bottles - getting me an 8 week course was the best they could do.

On June 1, I started to take it. Why the added wait? I'm a recovering alcoholic and wanted to wait until I had enough sobriety to start seeing an improvement in my liver enzymes. At 3 months sober my AST and ALT were still about double the ref values - this was a huge improvement over last year - but I continued to wait while improving my nutrition and hydration. I didn't test before I started but I was definitely feeling a lot better. With 5 months sober I began.

And within days I started to feel rather bad. Reading posts here and basically getting as much information as I could, I convinced myself that I was simply unfortunate enough to be in that 16% or whatever of those who have significant symptoms. It started with what, for lack of a better term, very strong hangovers in the morning that lingered for hours. Over the subsequent weeks these symptoms–dehydration headaches, nausea, fatigue, joint and muscle soreness, gradually got worse and lasted all day and night. I also started to bloat and gain weight after about 3 weeks.

For the last few days, the symptoms got to the point where I wanted to see a doctor. Something just felt wrong. But I've moved across the country and more recently lost my health insurance, so access to a doctor is difficult now. I went to the ER last night in a moment of desperation and told the resident doctor all of this. She ordered a comprehensive met panel including liver function, then came back with very welcome but unexpected results:

I'm ok! Really! Here are the only variations from their ref ranges:

NA 133 [ref range 135-145], BUN 24 [ref 6-22], CREAT 1.19 [0.43-1.13], RBC 4.11 [4.5-.9], HCT 39.9 [40-52], MCV 97.1 [81-97], BASOPHIL 1.9 [0-1%].

Liver panel: AST 30 [10-40] ALT 32 [10-60] ALKP TOT 63 [20-130]

Didn't expect that but I'll take it. They couldn't do a viral load/viral count test in the ER, they said I need to see a specialist for that, but ok. I'm working on that now but it might take some time because of my insurance and financial situations.

Anyway, the ER doctor confirmed that I simply fell into the significant side effect symptom percentile, and that I should probably continue with the Harvoni since I'm already 6 weeks into it and follow up with a specialist. Meanwhile, the side effects remain significant but from what I've been reading they could be worse - in some cases a lot worse, so I guess I'm just going to rough it out.

I understand that this isn't the best possible treatment plan, but I'm 54 yo and was infected waaay back in 1970 from a blood transfusion. I had an 8 week supply that was long overdue to begin. And now the solid lab results encouraged me to continue.

Finally, here's a couple of questions: is there any harm in stopping short of the typical 12 week course then resuming at a later time, if viral load test results suggest that I need to? I've seen here and elsewhere that some patients are now only prescribed 6-8 weeks, not 12. What's the current thinking on that?

Thanks! Any comments are welcome.

[Scoutdoy]

Good news on your liver panel, and your viral count probably would have registered undetected. Don't stop taking your meds. Studies have shown that the 8 week course is curing people, so keep on track. Hydration seems to be the most important part of this treatment. Your gonna beat this


Scout

[kwsmithphoto]

Thanks, Scoutdoy! Yes, water - good, clean water. I'm at 2-3L per day and people around me joke that I should have been a fish.

[Scoutdoy]

Don't drink too much, it can be just as bad as not enough. There are some threads on here about people drinking too much water and that can screw your numbers also. Just drink enough to stay hydrated. Good luck

Scout

[kwsmithphoto]

Yes, not too much. I don't think I am - urine is pale yellow, and my symptoms still feel like I'm just a little dehydrated while my bladder fills at good intervals (no night bathroom trips for example).

[its time]

I'm on a different treatment....but water is stressed also...I was drinking 8 8 ounces a day and after speaking with the nurse she said I should b drinking half my body weight.. so I upped it some... have been monitoring it on bathrooms runs and so far it seems to be the magic number for me..

keep on trucking  with your treatment .... good luck

[KimInTheForest]

I'm on a different treatment....but water is stressed also...I was drinking 8 8 ounces a day and after speaking with the nurse she said I should b drinking half my body weight.. so I upped it some... have been monitoring it on bathrooms runs and so far it seems to be the magic number for me..

keep on trucking  with your treatment .... good luck

The "half your body weight" guideline for water-drinking means: if you weigh 200 lbs, then drink 100 ounces of water daily. If you weight 128 lbs, then drink 64 ounces daily (i.e., 2 quarts). etc.

And some people say if your pee is clear and no longer yellow, you are drinking too much water. Too much water consumption can cause problems such as washing out electrolytes.

kim

[Myfly73]

I have had mild headaches twice so far. I do get fatigued, dehydrated and have muscle aches. My muscle aches were already happening before starting harvoni. I just go to sleep when I have a headache and I drink lots of water and Gatorade. I use to drink dinner wine from time to time. I stopped when I started my meds. Stay focused on You not what you use to do. It Will Make You Relasp!

[FutureThinker]

Kwsmithphoto -- I don't think anyone answered your question re: starting and stopping Harvoni.  From my understanding, having completed 12 weeks of Harvoni in May, once you start this medication it is extremely important to complete it, like antibiotics. 

The reason for this is there is a higher risk that you will develop resistance to the meds, which could lead to no SVR.  So once you start you need to finish! HOpe your journey is going well, as mine did.  FT