CO-INFECTED Need Advice (Harvoni)

[redrobot]

Hi everyone, i hope all is well.

I was co-infected with HIV/ & HCV 1 in 1995. Almost 5 years ago I had a liver biopsy and came back "mild scaring, stage 1 fibrosis". I don't know the status now as i only do LFT when i go for my HIV drugs every few months.

A couple weeks ago I got a letter saying I was approved to start Harvoni, at 1st i was over the moon because Doctors were saying the drugs had minimal side effects but after researching further I found horror story after horror story, and this from people without HIV.

Now I'm really worried. I have my pills at home already but i keep 2nd guessing myself.

Even though I get milf fatigue, i've learned to live with it for many years, apart from that I have a decent quality of life.

I'm a smoker and methadone (15 mls) user too, so that plays on my mind too. I'm thinking about calling the doctor tomorrow to see if he would be willing to give me 5/6 weeks to quit methadone a smoking. Get a bit more healthy before the treatment.

To make matter worst I was put on this new HIV drug Rezolta 6 weeks ago and I had a lot of side effects. So the HIV doctor (a different one from my normal HIV doc) changed to a different one, similar to the ones I was taking before Rezolta, and after 3 days taking it i only have a small headache every now and then. So that's OK
I asked the doctors if taking 2 new courses of drugs (my new HIV drugs and Harvoni) would be OK and they of course said yes.

I've trying to look for other co-infected people to see their stories but i can't find any.

I'm sorry for ranting but I don't really know what to do. The reports of people having lung problems, pneumonia, etc during or after treatment really scares. Cos as i said Im a long term smoker with HIV.

I'm thinking about asking for a Fibroscan before I make a decision. If i'm still "only" stage 1 fibrosis I'd be willing to put the treatment on hold. I don't know when I'd be willing to have another shot at treatment in the near future though. The Hep.C Doctors will probably give up on me.

I should have started the Harvoni already but I really don't know what to do ??

[redrobot]

After speaking to another co-infected patient and more HCV patients, i'm coming around to it.

I've got to be honest with myself. I'm 40 yrs old, my memory has been worse this past 3 years, which i always put down to weed (stopped smoking weed 6 weeks ago), my small/mild fatigue is always present (i got used to it) and those things alone are impacting my life. I hardly have any disposition to go outside.

Plus, i refused Interferon treatment 3/4 years ago, i had "only" mild scaring stage 1 fibrosis then (don't know now) and if i refuse treatment again they'll just give up on me and rightly so. I was willing to accept that.

I also gave my treatment spot to someone else that was a lot worse then me about 2 years ago but that doesn't count as refusal cos was actually the doctor who asked me if i'd do that as i had been selected and he was a new patient. Treatment are rationed on the NHS UK so they have to chose carefully. Thankfully this year they gonna treat an extra 15.000 cases yearly.

For the past 2 days I had been concentrating only on the people that had bad experiences after TX, but today I went to see people that got on decently better and that gave a new perspective. 

Even though I have a decent quality of life, for a 40 year old it's not a great life. I get tired easy, fatigue, long term memory bad, headaches every other day.... i have to think about that too.

I think i'll start my meds on Tuesday after i see my normal HIV doctor.

[Lynn K]

For most patients only infected with hep c treatment side effects are generally mild most common being mild headaches which seem to be helped by keeping yourself properly hydrated. Of course you are taking other meds as well but from what I have read patients coinfected also do well on treatment.

One thing I would suggest is quitting smoking when you are able to do so. With having HIV I would think that is a pretty serious risk in itself. I had a hard time quitting cigarettes. I finally quit on like my 5 try with the patch. Just think that every attempt to quit is a learning experience and not a failed attempt to quit.

Glad to hear you made the decision to go for it with Harvoni

Best of luck with treatment