Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: folsom on July 05, 2016, 07:36:50 pm
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I assume it will - if not then I've just swapped a healthy asymptomatic life for one of a debilitation immobilization and constant pain.
So - can someone tell me it goes away?
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I assume it will - if not then I've just swapped a healthy asymptomatic life for one of a debilitation immobilization and constant pain.
So - can someone tell me it goes away?
I too am assuming this pain we are suffering will go away once we are done with harvoni and get it out of our systems,
What is your genotype, how long is your tx (8 or 12 weeks?)
Keep us posted and hopefully we will both see light at the end of our tunnels of pain we are now in
Morab
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I'm 1a and originally 8 weeks, pending extension to 12 weeks. I'm trying a massage tomorrow - a bit scary since it hurts to move my legs in most directions and even just crossing my legs is not possible but I'm going to give it a try. I'll report back if its helpful or not.
Thanks for making me feel less alone.
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folsom
I was in such agony the first week I really wanted to change my own protocol to just 8 weeks of tx rather than a full 12 weeks. Folks here on the forum talked me into going with the flow for a better outcome.
You can do this, I did see my chiropractor once and need to go back as it helped soooo much, also the epsom salt bath seemed to work wonders.
Keep me posted!
We will both be graduating this year and hopefully come out with no lingering side effects.
I take my last pill next Sunday, and plan a major detox starting 48 hours after my last pill.
Hang in there and you can also Private message me any time you need an ear.
morab
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I'm well over a year post. I will say for me the joint pain has gotten worse. I know a lot of bashing is going on on this forum ( dragonslayer). I for one would not do it again had I known then what I know now. From a pretty much normal life to quality of life being shit. Harvoni is a BAD DRUG
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I assume it will - if not then I've just swapped a healthy asymptomatic life for one of a debilitation immobilization and constant pain.
So - can someone tell me it goes away?
For me, prior to treatment, my wrists, fingers, and elbows were excruciating. On my motorcycle, squeezing the levers and even twisting the throttle after a 10 minute ride or thumbing the turn signal became really difficult.. In the gym, barbell curls were almost impossible for over a year because of the elbow pain.... .On Harvoni, it got better, and post treatment, it totally disappeared... I dont know what caused the pain, but Im tempted to lay the issue at the feet of HCV. Removed HCV and removed the pain; been clear sailing since treatment. I still tweak my back every so often, but that's common among lifters who squat and deadlift.
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I'm well over a year post. I will say for me the joint pain has gotten worse. I know a lot of bashing is going on on this forum ( dragonslayer). I for one would not do it again had I known then what I know now. From a pretty much normal life to quality of life being shit. Harvoni is a BAD DRUG
Mike, what is your diet like?
Maybe diet could help.
I've posted what I'm trying over on the Harvoni And Me thread. Even if the DAA's make joint conditions worse for some people I believe we can still recover through healthy eating, exercise, and the passing of time.
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Mike, what is your diet like?
Maybe diet could help.
I've posted what I'm trying over on the Harvoni And Me thread. Even if the DAA's make joint conditions worse for some people I believe we can still recover through healthy eating, exercise, and the passing of time.
It's just so weird how DAA treatment can be followed by excruciating joint pain for some, and for others, like me, the joint pain I had been experiencing prior to treatment completely disappeared post treatment. Maybe some day they'll figure out the connection to the different individual responses.. Til then, it remains a mystery.
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I had no joint pain prior to treatment. My diet is good, I try to eat well and take care of myself. I'm 54 and not trying to leave this world any time soon
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It's just so weird how DAA treatment can be followed by excruciating joint pain for some, and for others, like me, the joint pain I had been experiencing prior to treatment completely disappeared post treatment. Maybe some day they'll figure out the connection to the different individual responses.. Til then, it remains a mystery.
I know, it is such a mystery.
I did think of one possibility however, but this is just me speculating.
I had a kind of allergic reaction on the 2nd day of taking Sovaldi/Daklinza, and I know that often when people have allergic reactions they feel pain in their joints. So could it be that some are somewhat allergic to the meds?
When I eat shellfish or some types of sea salt I have an allergic reaction, feel pain in joints and muscles and a general malaise, 'hot' lungs, fatigue. I had to find a non-shellfish version of chondroitin/glucosamine.
Reading the laundry list of excipients in Sovaldi (which is part of Harvoni) as well as Daklinza made me feel wary....there are so many in both these medications, and one is even a probable carcinogen (if I remember right it is actually banned in Canada).
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http://www.hepatitiscentral.com/news/joint-pain-and-hepatitis-c/
Sorry, the article is a few years old...
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Mike,
It is not appropriate to continue blasting Harvoni because you had a bad experience. Telling what you faced and your post treatment experience can be helpful, but whether a drug is bad for someone other than you, or if it is the miracle a chronic Hep C patient has been waiting for is between a person and their medical professional. None of us, including you, are qualified to speak to the usefulness or possible success or failure of Harvoni or any other treatment. This forum is for informing, but that grey line is crossed when you start invoking fear by stating things you cannot possibly state, such as "Bad Drug". I went through several Hep C treatments myself, and for every x number of successes for any of them is cases of dramatic side effects. Why this happens is a mystery to me, but again what problems you or I would have with a drug has no bearing on the next x number of patients.
Thanks for showing a bit of restraint.
jack
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As I have said it is my opinion!!!! Do you work for Gilead?
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Please Mike,
Please be considerate.
No, I don't work for any drug company, and like the rest of the moderators here I am a chronic Hep C survivor trying to help. We all have real jobs, and are unpaid volunteers on this site. We just want people to feel comfortable here and have a safe place for questions about Hep C be discussed in a civil way.
Thank you for being respectful to this forum and its members.
jack
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For the record: every moderator on this forum began as a member, and continue to use this forum as members. Moderators do not get paid. They willingly put in extra work, keeping the forum safe from spammers and trying to make it a safe, compassionate place for the exchange of good information.
Attacks on people will not be tolerated.
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My thanks to all the monitors - it is not an easy job and requires nerves of steel sometimes.
Thanks for keeping it civilized and safe. 8)
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I assume it will - if not then I've just swapped a healthy asymptomatic life for one of a debilitation immobilization and constant pain.
So - can someone tell me it goes away?
If you have had liver damage from any disease then there will be increased deterioration of the skeletal muscle framework, period. For me the years of slow deterioration had me using a cane until I was treated. The recovery after Harvoni is still ongoing and what I can say is that the rate of deterioration has slowed. Other noticeable problems with my joints have ceased.
For instance when I study classical guitar for long periods of time I no longer develop cramping in the hands and muscles of my forearms, which is a miracle IMO. I should post a picture of my hands. There is swelling of the proximal phalanges at the mid knuckles. This swelling has stopped and is not getting any worse, the result is that I can play difficult music better than I have in over 20 years! In 2013 I had stopped playing and studying and had completely given up all hope of effectively playing music.
So for me there is no doubt that Harvoni treatment did not cause joint problems, if you are experiencing decreased mobility post treatment then there is most likely something else happening. I hope it eases off soon.
All the best
Eric
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Although I'm glad you're getting better, for whatever reason, I can tell you that my join and muscle pain was UNDENIABLY and IRREFUTABLY caused by Harvoni. Why, I cannot say, but I have absolutely no doubt that it was Harvoni's presence that caused the pain (and other things) and its absence that caused it to go away again.
Not knowing that, not understanding that Harvoni was causing my symptoms, was cause for great anguish and doubt and it was a huge relief that others on this forum experienced the same thing.
Harvoni is a bit of a stinker in that many people seem to have a slightly different experience - but I'm grateful to it and to everyone on this forum.
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Although I'm glad you're getting better, for whatever reason, I can tell you that my join and muscle pain was UNDENIABLY and IRREFUTABLY caused by Harvoni. Why, I cannot say, but I have absolutely no doubt that it was Harvoni's presence that caused the pain (and other things) and its absence that caused it to go away again.
Not knowing that, not understanding that Harvoni was causing my symptoms, was cause for great anguish and doubt and it was a huge relief that others on this forum experienced the same thing.
Harvoni is a bit of a stinker in that many people seem to have a slightly different experience - but I'm grateful to it and to everyone on this forum.
I'm glad you're getting better, and it's reassuring that your pain went away as it causes me to feel mine might as well.
Found this study that has back pain listed as an adverse reaction of Sovaldi (one of the components of Harvoni): http://www.ncbi.nlm.nih.gov/pubmed/25422576
There's also a lot of people complaining about adverse reactions to Harvoni at MedsChat.com....someone was mentioning elevated Creatine kinase as the culprit, but when I went to the Canadian website (if I went to the right one) I could only find problems occurring when Riba had been taken along with Harvoni.
Most alarming were the heart problems that developed in people, as my heart has been skipping beats. I thought this was only a known issue when taking certain kinds of heart medications with Harvoni/Sovaldi.
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I find the cardiac reports alarming, particularly since European doctors reported this, and are looking to see if it is an adverse event. One of the tricky things about some of these reports is separating out what was caused by the hep C meds, and what could have been caused by medications taken simultaneously, such as a drug to manage a side effect.
I too wonder about all the various adverse events being discussed here, both personally and professionally. And like some, wonder about the after effects, again personally and professionally. Although I can't be sure about what occurred to me, I handled it by reporting what I experienced to the FDA. I console myself by maintaining my perspective. Harvoni cured me. I don't live with that haunting fear of wondering if one day I'll have cirrhosis. Or the knowledge that my risk of dying is 15 to 21 years earlier because of hep C. Or the big one - the burden of knowing I can infect someone else. So, despite the potential problem that Harvoni may have caused, I still feel I came out way ahead.
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That sums it up nicely....
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I find the cardiac reports alarming, particularly since European doctors reported this, and are looking to see if it is an adverse event. One of the tricky things about some of these reports is separating out what was caused by the hep C meds, and what could have been caused by medications taken simultaneously, such as a drug to manage a side effect.
I too wonder about all the various adverse events being discussed here, both personally and professionally. And like some, wonder about the after effects, again personally and professionally. Although I can't be sure about what occurred to me, I handled it by reporting what I experienced to the FDA. I console myself by maintaining my perspective. Harvoni cured me. I don't live with that haunting fear of wondering if one day I'll have cirrhosis. Or the knowledge that my risk of dying is 15 to 21 years earlier because of hep C. Or the big one - the burden of knowing I can infect someone else. So, despite the potential problem that Harvoni may have caused, I still feel I came out way ahead.
I agree, Lucinda.. Does anybody know where I can learn more about this potential Harvoni - Heart connection aside from anecdotal reports? Is this being investigated in connection to patients on Harvoni treatment, or post Harvoni treatment?
I know of the adverse connection between Harvoni and amiodarone , but want to learn more about investigations into possible connections to heart difficulties post treatment, absent amiodarone .
Thanks.
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I reference this in a blog I wrote in January: https://www.hepmag.com/blog/hepatitis-c-side-effects (https://www.hepmag.com/blog/hepatitis-c-side-effects)
I must confess, I haven't heard anything about this lately, but the liver meeting is in November, and that is a good time for post-marketing info.
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I reference this in a blog I wrote in January: https://www.hepmag.com/blog/hepatitis-c-side-effects (https://www.hepmag.com/blog/hepatitis-c-side-effects)
I must confess, I haven't heard anything about this lately, but the liver meeting is in November, and that is a good time for post-marketing info.
Good read. Thanks for your blog reference. I wish there were a double blind study comparing adverse events reported by a group receiving Harvoni and a group given a placebo. In development, wouldn't safety trials have these results? Would they be attacked as unreliable since conducted by the seller? Maybe an independent study?
Just as interesting would be a similar study tracking post treatment adverse events, but not sure how this could be done ethically.
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Hi,
I don't have intelligent answers to your questions, but I know there are a few post-marketing studies, one of which I am in. Since the first of these doesn't close until the end of 2016, we will only have preliminary data at the liver meeting. I do recommend looking at European, Japanese, and Canadian sites for info about drug side effects.
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During the lst 4 weeks of my 8 week treatment I was experiencing pain in the right shoulder, elbow, wrist, hip, and knee simultaneously. All down the right side.
I had a weekend were both of my legs were in pain and huge discomfort.
About a week and a half before completing treatment I began to get a dull but rather intense ache in my right rib cage. This causes a great discomfort doing my job.
Since treatment has been over I have the pain in various places around my rib cage and suffered with it all weekend. I go to work in about an hour and if I were not a Supervisor I would be staying home due to it.
All the areas that hurt feel as it is between the ribs like someone is pushing in between them with a rounded blunt object.
In size all feel to be in areas concentrated about I inch or so in diameter.
Kind of feels like a slow torture.
Anyone else have this same type of thing going on?
Joints themselves seem to be minor issues and a lot of the time non-existent.
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If it were me, I'd get this checked out with my doctor. I ignored a few things that I assumed were medication side effects, and needlessly suffered waiting for them to go away...since they weren't side effects, they would not have gone away on their own.
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If it were me, I'd get this checked out with my doctor. I ignored a few things that I assumed were medication side effects, and needlessly suffered waiting for them to go away...since they weren't side effects, they would not have gone away on their own.
I certainly will.
It is unusual and never heard of this from reading the forum.
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Although I'm glad you're getting better, for whatever reason, I can tell you that my join and muscle pain was UNDENIABLY and IRREFUTABLY caused by Harvoni. Why, I cannot say, but I have absolutely no doubt that it was Harvoni's presence that caused the pain (and other things) and its absence that caused it to go away again.
Not knowing that, not understanding that Harvoni was causing my symptoms, was cause for great anguish and doubt and it was a huge relief that others on this forum experienced the same thing.
Harvoni is a bit of a stinker in that many people seem to have a slightly different experience - but I'm grateful to it and to everyone on this forum.
To clarify I had noticeable myalgia post treatment and there is no doubt that it could have been related to treatment. Fortunately for me, it cleared up and today I am doing things like wading the Skeena river which has large stones and is a huge river with some long stretches of boulders to traverse.
Before treatment this would have been suicide as my leg strength was starting to go and I was using a cane. The liver is an amazing hunk of tissue, now that it is working well my heart rate has slowed, my renal system does not leak constantly, my thinking is clear and focused and most of all life is worth the living again.
Cheers and all the best to those who are having post treatment difficulties, hang in there it should get better very soon!
Eric
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Talked to Dr. about my unusual pains and she did not think it was related.
These and other aches and pains clearly from treatment have now gone away after a few weeks.
Energy levels have increased and brain fog is gone. I have become much more active the last couple of weeks.
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;) you bet! I went to lots of trouble finding out why this was happening to me. My joint pain started about a week after finishing it!
I actually went to the rheumatologist, they assured me it would and it has. Myne was bad! And and totally understand what RA must feel like now.
I had this pain for over a month tho! And every day I woke up another joint would be added to the pain thing, greeting sound in one of my knuckles to was awful.
I figure if your an asthmatic or get allergies and have an active immune system when harvoni stops this virus and your body suddenly isn't fighting any more, it kinda goes crazy for a while. Just a theory.
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I figure if your an asthmatic or get allergies and have an active immune system when harvoni stops this virus and your body suddenly isn't fighting any more, it kinda goes crazy for a while. Just a theory.
Quite a few people on this forum have voiced a similar theory Tania about over-active immune function post-Harvoni. You are not alone.
kim
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That's good! Because I put this to my heptology stuff and the lady doctor is taking that to a meeting.
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For me, join and muscle pain exists 3+ years after Harvoni. I had NO, let me repeat, NO such pain prior to taking Harvoni. This along with tinnitus, constant headache, loss of 50% lung function, hair loss and neuropathy...NONE, let me repeat....NONE of which I had before taking this drug. Wish I never had. My liver was in great shape and blood tests good. Was promised the world and was given hell for the rest of my life.
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I am 3 + years post harvoni. I also suffer from muscle, joint pain. I was hoping it woulg go away but so far it hasnt. Some days are better than others. I have been taking narcotics since treatment and thats dangerous as i am in recovery now 13 years. I am grateful i do not have hep c anymore. grateful my liver is good now. I have 5 years before i retire and i hope i can make it. and hope it gets better so i can enjoy being retired