New Member, some side-effect notes on Harvoni

[thingsbuilt]

Hello-
I am a new member here, 54 y/o male, diagnosed Aug 2011. Recent infection.  (I had cancer surgery
in 2007, plus 5 months of chemo, so everything was tested back then and no Hep-C.
Which means that my infection happened sometime between 2007-2011).  I still don't know how I got it, but that's another story.

I was diagnosed HIV positive in July of 1996. I take Isentris and Truvada, and tolerate them fairly well. My HIV viral load is 0.

I wanted to briefly put in my two cents about the Harvoni side-effects-- soft-pedaled by doctors, of course. The "specialist" I am seeing (the guy at the AIDS clinic who is assigned to dole out this drug) actually told me that he hasn't heard of any side effects at all from patients! I beg to differ with him.

I am starting my second month of Harvoni, and things change daily. Just when I think it's smoothing out, another new side effect comes along, or the old ones come back. I assume it has a build-up, like chemotherapy. The first days I could not even get out of bed, I was so tired. That resolved itself, and then the headaches started.
I take this Harvoni at night, because I did not want to feel incredibly sick all day (like from new HIV meds which always made me sick), even if that's not what it does... 

I've had a good solid month of headaches. Especially in the morning, and they are severe enough to get me scrounging for leftover vicodins (from a sinus surgery several months ago).
I take 1/2 of a vicodin and 1/2 of a tylenol, and one excedrin, and 1/2 cup of coffee, and usually am ok after that. Sometimes I add a Sudafed, since it's sort of like a sinus headache but on one side, like a migraine.
The headache returns during the day, and I usually take more tylenol. The headache
sometimes comes back at night; if it does, it is NOT mild. I am fortunate that they are not coming on at night too much anymore. Really, I am tired of medicating with vicodin, I had enough of it during my cancer and chemo. It's very hard to tolerate.
If you have bad headaches you might ask for Fiorinal or Fioricet, which is like tylenol #3 but targets severe headaches. I was told that I couldn't have it unless I get referred to a specialist, which my insurance won't approve, so whatever.
(I have a history of migraines
from 1994, with neurologists and ENT doctors, but they have gone away in the last five years... until recently). (Which is to say that I suspect Harvoni is triggering migraines, maybe once a week, not every day.)

I have become very light-sensitive, which adds to the headache/migraine thing, and now working outside in the sun  (I am a stage carpenter) can bring on a really bad headache now.
I see from other reports online that the headaches are here to stay, so I am figuring out how to medicate them with the minimum amount of opiates. Tylenol never worked for me for anything, and I am told not to take Advil.  But I operate power tools and I do NOT like the woozy feeling of any opiate (and I usually want to vomit). My doctor is so "anti-drug" that he refuses to prescribe anything right now, since these are "temporary." Some days I can cobble together something to take, but other days I just want help.

Ok, moving on..  my lower back was slightly messed up before (#4 and #5 lumbar) and maybe the Harvoni is to blame for a lot more pain than usual over the last month. I have to be really careful even lifting anything, for fear it might seize up again. (That's seven days in bed, 2 of them I am unable to move).
But the last week it's been ok.

Then, the knees. I have not had knee trouble in my life much, but my left knee began to hurt 2 weeks ago, and it has got to the point that walking is a problem.
I got a knee brace, which helps. But it always hurts now, walking or bicycling.
So I'm getting a little depressed. Four days ago I couldn't walk at all, and I stayed home. Over the next few days it has gotten better. Then yesterday another part of my knee starting so bad that I couldn't walk again. It's actually better now, but I lost another day of work. My clinic basically directs me to an Urgent Care facility if it is an emergency, but I cannot get a same-day appointment to see my own doctor or make an appointment any earlier than next month. Is a bad knee an "urgent care" problem? I usually say "no" and don't bother anyone.
And what would Urgent Care do for it? I'm guessing nothing.

I'm keeping a log of Harvoni side-effects, mostly for putting into online forums, not to show my doctor because he wouldn't read it if I did. (I guess there's not anything he could do anyway, but he is rather dismissive, or overloaded with caseload).

I'm pretty fuzzy, especially in the morning, and everything is blurry. I have bought reading glasses. I find that in the daytime if my knee permits, I can ride my bike again (I used to ride 5 miles a day, to work and back, but no more)... but I am noticing that my spatial awareness is a little off, and I am not processing traffic and parked cars and other things very well, so that is not good. I will probably keep trying to ride but I think an accident is entirely possible, so that worries me. Same goes for cutting wood with power tools.

There is some joint pain, more in my wrists than in my ankles. My left wrist hurts at night (and wakes me up). I can't rotate my thumb. I reported this to my doctor (along with the knee thing) and he sent me for physical therapy.
They didn't know what to make of me, since nothing had been x-rayed or diagnosed.
So I wrap it up most days. I am right-handed, so I guess I can live without my left hand. Other than my knees hurting, my legs are sort of numb (if I try to stick myself with a pin).

Basically everything hurts, and I've been told to try yoga. (I get this, because you can only take so much tylenol in a day).

I always had trouble falling asleep at night, but I hate drugs so I don't take anything for sleep except ativan or benadryl. Harvoni has not made it harder to sleep,
but I am wide awake at 7 AM (which I hate) and of course my head hurts, so I get up. In 2 hours, after coffee, I am ready to fall asleep again. I think that I am not getting real sleep, just some kind of fake sleep, because I'm tired all day, but very alert. But fuzzy. I'm driving really well, though more aggressively than usual.
I don't forget where I'm going, but I usually forget the trip there.

The problem with these headaches for me is that lying down makes them real bad.
So I have to sit up, or stay up if I get one in the middle of the night. I hate this.  I've noticed that the neck muscles and the cranial muscles are all tight, something I haven't noticed since I had migraines 5-10 years ago.

I'm starting to have some lower intestinal cramps, which may not be Harvoni, but I don't have an explanation otherwise. I drink a lot of water, of course.

I've avoided social events, even though I work in a theater;  I just feel less than great; also everybody else is always drinking... I can ignore that but overall I'm pretty depressed (especially since I can't lift ANYTHING with my back, and am sort of limping on one knee, and can't lift a frying pan with my hands).

I'll be glad when this medication is over.. in two months. I used to be healthy and active. I feel suddenly OLD.

I am guessing that if you are on HIV medication AND Harvoni you may get more side-effects than someone who is only on Harvoni, so that may be why I read mostly about very happy people who drink a glass of water and their headache goes away.

Well, that's one month on Harvoni, for me.

thanks for listening-
steve

[KimInTheForest]

Hi Steve, and welcome to the forums! Sorry to hear you are having so many sides on Harvoni. As you say, it is possible that people on HIV meds + Harvoni get more Harvoni sides than people on Harvoni alone. I think (and hope) you will find that those Harvoni sides are just temporary and will go away after End of Treatment. Although even then, it may take a while for your body to sort itself out and find its new normal post-HCV and post-Harvoni.

All the best to you!
kim