Author Topic: Muscle and joint pain (Read 16331 times)

Sharpejimbo · « **on:** August 03, 2015, 12:41:11 pm »

On July 29 I started a 24 week program I have already experienced side effects that I haven't read about until I came to this site I had to get crutches today just so I can walk the muscle and joint pain prevents it. Does anyone know if the side effects get any worse or if your body gets accustomed to it.

sickpuppy · « **Reply #1 on:** August 03, 2015, 01:29:11 pm »

What treatment are you on?

Sharpejimbo · « **Reply #2 on:** August 03, 2015, 01:44:44 pm »

24 weeks of Harvoni

sickpuppy · « **Reply #3 on:** August 03, 2015, 01:54:13 pm »

Well, I must say, to have so much pain to need crutches in a mere 4-5 days from Harvoni is quite uncommon.

Muscle and joint pain is indeed a side effect people on Harvoni often report here on the forum. However, it usually takes a while for the pain to build up and it usually remains at the same level: annoying, but able to live with for a while.

I suggest you tell your doctor immediately - but do push him to check for something else - rather than blame it directly on Harvoni, and discontinuing it.

Remember, you develop a resistance to Harvoni (to the ledipasvir component to be exact) so if you discontinue it, you're not getting a second shot at it.

Interruption of treatment is also, not advisable, since you develop resistance in that time and the rest of the treatment is less effective.

My advice: Ask your doctor to test for anything else that might cause it, and unless he's absolutely 100% sure it's the Harvoni, to leave it be.

You really don't want to discontinue Harvoni, and there were no deaths associated with it so far, but if you are indeed having a unique, aggressive reaction to it and there's nothing you can do against it, then Harvoni interruption might be the only option.

I really do hope this is not the case. A lot of us are having side effects, but we clutch our teeth and power through it and hope for the best. However, we all make sure they aren't serious or life-threatening.

dragonslayer · « **Reply #4 on:** August 03, 2015, 02:51:42 pm »

>>A lot of us are having side effects, but we clutch our teeth and power through it and hope for the best. <<

Just to keep things in perspective, I dont know that Id say 'A Lot' of people are having side effects from harvoni. The data is that the vast minority are having side effects.. Im not diminishing the fact that to those who have them, they seem serious. But we dont want to alarm people away from treatment from overstating their existence either.

sickpuppy · « **Reply #5 on:** August 03, 2015, 02:59:01 pm »

dragonslayer is right. A lot is a bad choice of words. SOME people, do have them. I've been on Harvoni + Ribavirin and I haven't had any side-effects whatsoever. I might have possibly had some, but I would rather attribute them to Ribavirin, plus they were rather returning ones that I've had in the past with no TX whatsoever such as a slight yellowing of the eyes, a mucus stool, and some muscle cramps.

Sharpejimbo · « **Reply #6 on:** August 03, 2015, 04:41:45 pm »

No one should be scared of taking any treatment that will potentially save their life I went on interferon and ribavirin and they tried to kill me I was hospitalized for three months I had body wide infections and all my skin fell off this is nothing in comparison and if I have to hobble around on crutches and have a sore joints and sore feet I can live with that my question was has anybody experienced what I'm going through this early in treatment I'm on a 24 week program and like anyone else would do they would power through it

KimInTheForest · « **Reply #7 on:** August 03, 2015, 05:51:10 pm »

Hi Jim. Sorry to hear about the problems you're having - and so early into treatment.

I don't know the answer to your question about whether others on Harvoni have experienced side effects like this so early into treatment. But here are a couple of other threads where these things have been discussed:

http://forums.hepmag.com/index.php?topic=2308.0

http://forums.hepmag.com/index.php?topic=2796.0

Good luck with it!

kim

Mike · « **Reply #8 on:** August 03, 2015, 06:26:56 pm »

Hi Jim,

I would talk to your doctor about the joint and muscle pain. If it is to the degree that, in 4 days, you need crutches to ambulate, you should have it checked out.

You should be able to work and have quality of life when taking Harvoni and it should not hobble you.

Best wishes, Mike

Sharpejimbo · « **Reply #9 on:** August 03, 2015, 06:36:43 pm »

Thanks for your input Mike you were cured using interferon and it almost killed me I must be a freak of nature because I got side effects They don't even know about Ive got to go back and see my hepatologist next week and will be talking about it thanks again

Mike · « **Reply #10 on:** August 03, 2015, 08:00:41 pm »

Hi Jim,

The Sovaldi cured me (knocked the virus out in a week). The Interferon and Ribavirin were just sidekicks.

I will say, however, it was no joyride - but much better than the 48 week course I did in 2001. That about killed me.

Please hang in there - but make sure to discuss these side effects with your doctor.

Best, best wishes, Mike

Bree · « **Reply #11 on:** August 03, 2015, 10:05:03 pm »

Hi Jim,

Just wishing you the best with this treatment!

Kim · « **Reply #12 on:** August 04, 2015, 10:26:53 pm »

I finished treatment 4 months ago and my joint and muscle pain is still very debilitating. It hurts to walk and I have to take narcotics almost daily to function. I would have waited for another treatment to be developed had I known this would happen. How long will this last? Who knows...the doctors sure don't.

Sharpejimbo · « **Reply #13 on:** August 07, 2015, 02:40:30 am »

Week one is come to a conclusion I'm taking anti-inflammatories by the time I still have swollen feet most of the muscle pain is going away but I'm still having difficulty walking I think the Harvoni has some our aggravated gout that I experience from time to time. However this is going on for a week so I have to believe that it's harvoni related .

marybarter · « **Reply #14 on:** August 08, 2015, 12:27:24 pm »

I have been on Harvoni now for five months. Joint and muscle pain were constant until about 2 weeks ago and now it has let up. I have 28 days to go and was virus-free after 10 days of Harvoni. It was worth all the pain and insommnia.

Kim · « **Reply #15 on:** August 08, 2015, 01:11:23 pm »

A 6 month course of Harvoni? I thought 8 or 12 weeks was the normal treatment time.

marybarter · « **Reply #16 on:** August 08, 2015, 01:47:36 pm »

24 weeks of Harvoni is recommended for those who have had interferon and ribaviron. My firbrosure score was F4 and 24 weeks is the standard for those with my score and relapses after other treatments.

KimInTheForest · « **Reply #17 on:** August 08, 2015, 02:22:23 pm »

Welcome to the forums, Mary, and good luck! Great that you are closing in on the finish line, that you are virus-free, and that your joint & muscle pain has finally lifted!

best,
kim

Scoutdoy · « **Reply #18 on:** August 10, 2015, 11:01:02 pm »

Hi Mary, sorry to hear about the joint and muscle pain. I had horrific joint and muscle pain for years. Dont know if it was because of the hep c or that I am just getting old or because of my job. I suppose it could be a combination of all 3 really. It is difficult when my doctor asks me questions like do your joints hurt? well, yea, they do, but it could be because of many reasons. I wish I knew what was the underlying problem. Last visit when they asked me, I pulled out my cell phone and said "I walked 27,334 steps at work" I am very tired but it could be that or it could be that I have had hep c for 30 years....dunno.....lol I will say that since I have started taking Harvoni my joint pain seems to be a lot better and the only real side effect I am having is my eyes. They dont hurt, they just feel kind of queezy.

marybarter · « **Reply #19 on:** August 11, 2015, 11:53:10 am »

As I stated in my post, I had pain in my muscles and joints the first 18 weeks or so of Harvoni. This was unlike any kind of pain from work-out sessions, a change in lifestyle, etc. My doctors explained that it was important to refrain from exerting myself as I usually do throughout my daily life. I cut back on workouts and basically did exactly as they instructed. I listened to them and therefore didn't "fight against the drug doing it's work". At this time, I'm experiencing little pain and have no complaints. I feel strongly that if someone is experiencing new symptoms when they start Harvoni, it's important that their doctors listen and give suggestions. Support from the doctors and care providers plays a huge factor in a patient's well-being while on this drug. I have been virus-free since day 10 on Harvoni and will take my last pill on September 3 after 24 weeks on Harvoni. I believe I am cured and virus-free for the first time since 1983. It will take me some time to truly digest this after all of these years but it's a very good feeling. I give full credit to my doctor for getting approval from my insurance to start my cure and for helping me through the last five months. For those who are starting this drug, please seek support from health care providers and advocates.

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Author Topic: Muscle and joint pain (Read 16331 times)