Can Harvoni treatment cause RA?

[Kim]

Hi there,  I have been posting about my joint pain since week 10 of my 12 week Harvoni treatment.  Now my left wrist is increasingly painful, hot and swollen and my GI doc has referred me to a rheumatologist. It will take 6 weeks to get into see him and in the meantime,  I have been advised to wear a splint and take pain medication. Anyone else have this experience?

[tinybuilder]

Yes! I have had join,muscle,bone and tendon pain-severe for 7 years with no help from my doc except pain meds.I found a way in Feb. 2014 to get myself tested for hep c-and took the positive results to my doc.On Feb. 2,2015-started on Harvoni. 16 days left to go! But severe,I mean severe all over pain flares 2-3 times a month-each lasting 5-10 days. This last one was 12 days and ended suddenly yesterday.So far today,just the "regular" all over severe body pain. I wish I had a doc that would refer me to a Rheumy!I have asked him to for 7 years and he just says "I think we've tested you for that" and I say" no,we haven't".My specialist treating the hep c is a Gastro and I've only had him for 4 months. My GP 17 years!I'm way up in the mountains and just a few docs up here. But,now that I have to drive down the mtn. once a month,I am gonna look for a Rheumy down there,altho haven't been able to find one on the internet yet.I'm in so much pain nearly everyday round the clock,that driving is really getting difficult.Thing is when in these "flares" any movements make a "cracking/snapping of bones, tendons,joints? I don't know,it renders that part useless til the end of flare,which spontaneously ends as quickly as it starts? In my experimenting with myself,lol,it seems to respond to magnesium malate and magnesium/calcium/vitD?I don't know if we are supposed to take that stuff while on treatment? I didn't care a few days ago-I was gonna do whatever it took to put an end to the "intractable" pain and severe all day/night stiffness.These flares have become 3x as bad on treatment.Oh,and I was undetectable for hep c at 4 weeks and also still at 8 weeks and liver enzymes back to normal one week after start of treatment,yay!Other than low platelets,blood tests all good.Wish I had a solution to this pain/stiffness soon,as I don't know how much more I can endure-I'm hoping you find an answer soon!

[Kim]

Yes, I have that cracking/snapping you described in my left wrist. Very odd...It came upon when I woke up one day, and I hope it goes away just as fast!

[lovinglife]

I'm almost done with 3 months of Harvoni treatment and waiting/praying  for the good words at the end.  I had a very strange hand and elbow situation before I started treatment.  The ring finger of my right hand swole to 4x its size and I could barely move it (which was a problem, as I work at a computer). Went to a rheumatologist who never linked it to HCV and who said it looked like osteoarthritis coming on and there was little he could offer, blah, blah. Then after that (and still before HCV treatment) my left elbow did the same- swollen big, hard to move and extremely painful.  I am happy to say both situations were temporary (a few months) and both joints are almost back to normal, but not quite.  Sine I started Harvoni, I have had no similar problems starting.  Also in recent years I have had mild to moderate achiness in many joints, which I attributed to age, not HCV. I read somewhere, cannot recall where, that HCV can cause joint problems in the hand and other bones.  Hope your problem is transient (temporary) as mine apparently was. Best wishes.

[BubbaT]

To add to this discussion , after starting Harvoni at week 4, I started to have,

blisters small, fluid filled plasma type, on both hands,and swelling in both hands and fingers,  no where else,  it was strange I had small blisters in the palms of both hands, and most noticeable on my fingers,
And as I rubbed my hand together it became like intense burning in my hands, the blister were not itchy at first 2-3 days then begun to itch,

After about 6 days the blisters begun to slowly go away, but my hands feel different now to the touch, dry....

[Junkyard]

Before havoni and ribs treatment I had a sciatic nerve issue in my right side.  Got a cortisone shot and did not really help. I am on week 9 of treatment, my back is really not good at all. I have the worst pain in the middle of my back and when I run and try to exercise it really flares up.  Glad there is only 3 weeks left. I can only hope this goes away after tx.
Good luck

[atomic dog]

Yikes, on Week 9, I've had the usual aches and pains and itchiness and headaches etc that everyone describes. A couple of nights ago I woke up with maybe the worst pain I've ever felt:it was like someone was drilling into my hip with red-hot drill. Unbearable. It lasted a while, and I fell back asleep. Weird. Looking forward to my last pill.

[Kim]

Hello all,

I got an appt. with another rheumatologist this coming Tuesday. Atomic dog..your experience does not surprise me - all kinds of strange pains are popping up with me as well - the worst being my left wrist.

I'll keep you all posted!

Kim

[Mugwump]

There is absolutely no doubt that autoimmune diseases are exacerbated by responses to HCV.  So there is most likely a relationship between autoimmune arthritis and HCV.

The big question is how Harvoni effects the immune system. Interferon is created naturally by hepocytes and the most difficult to treat retro viruses like HCV in particular,  have developed mechanisms to counter the natural human response that creates interferon.

Whether or not Harvoni increases ones the natural production of interferon is not known and should be studied because if this is the case then a temporary bump in autoimmune responses  in some people might occur.

Here is quote of some scientific facts about interferon and a link to the page.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799164/

The IFNs(Dr. Howard Young, National Cancer Institute, National Institutes of Health)
The type 1 IFNs [interferon alpha and beta (IFN-α/β)] comprise a family of distinct proteins¹ that are produced by a wide variety of cells, including fibroblasts, epithelial cells, and hepatocytes,² although plasmacytoid dendritic cells (DCs) are probably the major source in most viral infections. In contrast, type II IFN [interferon gamma (IFN-γ)] is a single gene cytokine unrelated in structure to IFN-α/β that is produced largely by macrophages, natural killer (NK) cells, and T lymphocytes. Both types of IFNs interact with cells via distinct cellular receptors. The details of the signaling mechanisms by which IFN-α/β and IFN-γ induce the transcription of interferon-stimulated genes (ISGs) and depress the transcription of others are still being defined.³ However, it is increasingly clear that the complex transcriptional programs induced differ significantly depending on the IFN type, the cellular target, and the nature of the infection/host challenge.

The mechanisms that Harvoni uses are completely different,  it truly is a magic bullet and latches on and prevents the rna from transcribing directly in liver cells.  The precise facts about how it works are all available online.

My theory is that HCV is so insidious that it tricks the liver into thinking dead cells are actually still active liver cells so they are not discharged until the huge numbers of now encapsulated mature virus cells cause the cell membrane to break and spill active mature virus particles into the blood stream.

Therefore Harvoni might be also causing the liver to discharge cells that would have been little more than zombie factories for HCV for longer periods of time, had the components in the drug not killed off the replication process thus exposing the cells as being dead.

All a bit of a bad movie theme but logical because the HCV virus itself could replace other key system processes in the cells and use chemical signals that the liver system expects to trick the system into not destroying the dead cells and discharging them as bilirubin.

I am suffering a little more from joint pain and muscle pain but now at week 20 things are settling down and so is the joint pain and swelling. Here is hoping that my reasoning is correct and long term autoimmune effects do not occur because of the treatment. But it seems logical that some short term effects might occur because of the changes that occur as the liver heals itself effectively for the first time in many years.

[Kim]

I just went to a rheumatologist and he thinks I have arthritis caused by Harvoni. No steroids for me at this point as he doesn't want to suppress my immune system. Just NSAIDS and wrist splints. I am just over 2 weeks post EOT and my LFT's are WNL so that's good news. PCR is not back yet.

[koifish54]

My last harvoni  pill was may 4 last 2 weeks of treatment  anD still now on and off joint stiffNess and aches   have hasimotos  autoimmune  thyroid  disease this seems  worse  anyone else having this going to doctors   3 weeks not sure if they will be  able to answer  my questions  too new of a drug

[Mugwump]

My last harvoni  pill was may 4 last 2 weeks of treatment  anD still now on and off joint stiffNess and aches   have hasimotos  autoimmune  thyroid  disease this seems  worse  anyone else having this going to doctors   3 weeks not sure if they will be  able to answer  my questions  too new of a drug

My TSH level is up only slightly to 4.4 so I know what you are saying. But the good news is my guitar playing is not being effected and the swelling in my joints is down! So who knows.

Most importantly the damage that HCV did put me out of work. Guitar playing before the Harvoni treatment was such a strain that I could get no where studying Mauro Giuliani's absolutely wonderful opus 15 sonata for solo classical guitar.

NOW it seems that I will finally be able to record it in a few months if I do not have to deal with the return of HCV and the depression that would cause to me emotionally, spiritually and all the other ways that this demon disease does.

I can see part of the reason why the drug is so expensive is the penchant for lawyers in the US to go after the pharmaceutical industry. So looking for side effects for that crowd could turn into more of an online sport than anything else.

I do not think that HARVONI can possibly cause RA, but perhaps a fair number of our HCV compromised livers do.

Cheers
Eric

[JillLynn]

I had a complete body bone scan a couple weeks ago.     I have osteo arthritis.   So my joint pain was NOT from the Hep C.  I always attributed it to that.   But who knows?

I'm now taking celebrex 100mg a day and that seems to help a bit.   and get cortisone injections when it really gets bad.

but that is weird....after reading your posts......I never had trouble with my big toe and now I've been to the dr 3 times for it.  today got cortisone and have to wear an insert.

Do you think harvoni is making arthritis worse?       I do still have a pain in my side for months now......and no one seems too concerned about it so I'm just trying to ignore it

[Kim]

To be clear, I never had joint pain before I took Harvoni and now I still have very severe left wrist pain and can't move it. It definitely was not from Hep C!

[koifish54]

 this forum  is great for all of us to share  our own personal  experiences  with our treatment  and Reactions   and to benefit  from each other  because not all of our providers  can possibly  know all so   I hope with all of our input and our professionals  we can find some  ways to help us   harvoni is so new and many  people  are so different

[Mugwump]

I had a complete body bone scan a couple weeks ago.     I have osteo arthritis.   So my joint pain was NOT from the Hep C.  I always attributed it to that.   But who knows?

I'm now taking celebrex 100mg a day and that seems to help a bit.   and get cortisone injections when it really gets bad.

but that is weird....after reading your posts......I never had trouble with my big toe and now I've been to the dr 3 times for it.  today got cortisone and have to wear an insert.

Do you think harvoni is making arthritis worse?       I do still have a pain in my side for months now......and no one seems too concerned about it so I'm just trying to ignore it

I have had mild myalgia in my major muscles but no increased joint pain. In fact my fingers which have swelling in the joints are actually reducing!

This is most likely from activity studying and playing classical guitar and a lack of strain when I play. A classical guitarist is an athlete of the hands and arms. To play effectively you must move your joints in a fluid manner in a dance of absolute muscle control. Any strain or pain renders the instrument unplayable.
Also the accident caused stenosis and arthritis that I have from a displaced disk between L4-L5  caused by a fractured L4 in 1980 while working on a log deck are under control so I do not have severe weakness, numbness and horrible debilitating cramps in my left leg the way I did for years.

I attribute much of this to exercise and good muscle strength and relaxed tai chi more than Harvoni treatment though. But and this is a very important consideration my increased strength and better metabolism I do attribute to Harvoni. F4 cirrhosis was making me very weak  and in constant pain without the ability to even work hard for more than an hour at a time!

Harvoni has really turned that problem around in a hurry, at least for the time being. I know that my future life will be productive if I finally ever hear the word undetected something which I have never been!

Things will eventually change and the wait times will become reasonable, at least in places here like BC where they have to ration tests.  The patents on the process of computer counting the image of HCV particles for the purpose of assay are getting long in the tooth and hopefully soon there will be some competition for test kits, devices and perhaps just as importanly software to do the job!
Gilead is not the only firm charging high prices for essential tools for the treatment of this disease.

Sorry about the rant at the end of this post, but I never had a week 12 of treatment VL because our wonderful province is cheaping out and scrimping on tests because of the ridiculous cost of the patented essential process. If I had know this was going to happen I would have saved up and paid for one south of the border!

Eric

[grateful908]

This is unbelievable reading this. I too was diagnosed with RA, and also Lupus. Which is odd, because Lupus is a 96% womens disease. As for symptoms popping up. My left elbow ( acceptable) is in pain. My left thumb I can hardly bend. It looks perfectly normal. But the kicker is my left Big Toe. It's so sore I can hardly walk. I work in the Maintenance Dept. Corporate Hdqrs for an Intl. Corp. I interact with the CEO on a daily basis. I say that to say this: They can't know I'm on this medication. They're Syrian Jews and very funny about people with illness. I don't know what I'm gonna do if I keep getting worse flareups. I never really had any RA symptoms to speak of. A friend of mine has RA, and believe me, what I have is nothing. I don't want to start taking drugs for every ailment, because that just puts more strain on the liver.  Any thoughts?

[Lynn K]

There is a known association of hep c and RA could be the dragon is the cause

http://hcvadvocate.org/hcsp/articles/Bonkovsky-2.html

RHEUMATOLOGIC and AUTOIMMUNE MANIFESTATIONS
Myalgia (muscle pains), fatigue and arthralgias (joint pains) are common manifestations of HCV infection. HCV-related arthritis commonly presents as symmetrical inflammatory arthritis involving small joints. The joints involved in HCV-related arthritis are similar to rheumatoid arthritis (RA). This sometimes makes it difficult to differentiate true RA from HCV patients with positive rheumatoid factor but without RA. HCV-related arthritis is usually non-deforming and there are no bony erosions in the joints. A marker called anti-keratin antibodies has been studied to differentiate true RA from HCV related arthritis. In a recent study, 71 patients who were rheumatoid factor positive were tested for anti-keratin antibodies. Anti-keratin antibodies were detected in 20/33 (60.6%) patients with true RA and only 2/25 (8%) patients with HCV-related arthritis (10). Patients with HCV-related arthritis seldom respond to anti-inflammatory medications, and although there are no controlled trials to address this issue, it has been recommended to treat these patients with combination antiviral therapy of interferon and ribavirin

[Lynn K]

http://www.dol.gov/dol/topic/disability/ada.htm

Americans with Disabilities Act

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in employment, transportation, public accommodation, communications, and governmental activities. The ADA also establishes requirements for telecommunications relay services.


http://hcvadvocate.org/hepatitis/factsheets_pdf/ADA.pdf

HCV infection with accompanying symptoms is considered a “disability” for purposes of protection under the ADA.

[grateful908]

I find the HCV & RA link intriguing... If I was to get " cured " I suppose that means I will stop feeling these occasional bout of pain. !!!!!! Now that would be a double blessing. I really wish I could find a practitioner who cared more for his patients than money, and really sat down and coordinated all these tests and then added 2 + 2 and got an answer of 4 !!! Thank You very MUCH... I've learned more on this site in 9 days than I have from 50 blood tests. Now to get it all together and take charge of my health care !!!
    As for the Disabilities Act. It sounds real good on paper. I don't live in a Government wish tank. I live in the real world. That's all I'm gonna say. 

     Once Again, Thank You.

[Lynn K]

I guess it helps if you work for a large employer more bound by the rules.

The company I work for has currently 162,730 employees mostly in the US but also in other countries.

80,066 in Washington state alone so harder for them to not comply with federal law.

[grateful908]

Hi Lynn K- I notice the info in the link is from 2003. Is there anything more up to date??? There had to be advances in the last 12 years. The treatments they recommend have been subpar at best. Am I to assume by getting rid of the HCV the other associated illnesses will die with the virus?? Or is it treatment specific??

[Lynn K]

Harvoni prevents the hep c virus from reproducing the virus population dies off and that's it. That is the only thing Harvoni does is eradicate the hep c virus by neutering it.

I will still have cirrhosis for example it is a result of the damage hep c has left in its wake. But without hep c to continue attacking our systems we may have some resolution of our symptoms with time. That is my thinking anyway.

Not an RA person myself so that was just a quick google search I am sure you can find more information by looking

[grateful908]

Thanks. You sound like a genius    Thanks. Yes, now I have an idea of what is going on. Good Nite Lynn K.

[WholeFoods]

I have a spine joint that has become more 'flarey' in the last several years though traditional RA tests are relatively inconclusive, symptoms picked up again starting week 9 of 12 and continue, every other week or so. Sonetimes my fingers get stiff too. I am almost two months post TX and no signs of letting up. One person on the trial who was on RX pain medicine was able to go off after 6 months post TX, so I want to say there is hope these things will diminish wirh time. If not then we know we dont have hepc to blame or watch out for and we can treat some of these things properly. Hope we will most likely improve with time! :-)

[grateful908]

 I just hope that killing the HCV is also stopping whatever the HCV is causing. OR, does whatever the HCV caused, is it permanent? And then can it be cured? I guess only time will tell. It seems like my pains are jumping all over my body. Now the back of my knee feels like I got whacked with a baseball bat. Two 200mg ibuprofens later, and it subsided. EXACTLY 6 hours later, it's back. Repeat the process, and that's how it's been all day. No headaches, no fatigue, Acid Reflux in check, and now the Aches. I wonder what's next !!

[davidsconfused]

I just hope that killing the HCV is also stopping whatever the HCV is causing. OR, does whatever the HCV caused, is it permanent? And then can it be cured? I guess only time will tell. It seems like my pains are jumping all over my body. Now the back of my knee feels like I got whacked with a baseball bat. Two 200mg ibuprofens later, and it subsided. EXACTLY 6 hours later, it's back. Repeat the process, and that's how it's been all day. No headaches, no fatigue, Acid Reflux in check, and now the Aches. I wonder what's next !!

I started to get bad muscle and joint pain and muscle weakness about five years ago and at one point the pain was bad enough that I had to set a second alarm 20 or 30 minutes before the regular one so I could take ibuprofen and Tylenol just to be able to get out of bed and get ready for work.

I found by accident that cutting out most carbs helped with the pain but not all the weakness and bad weak spells sill hit off and on. Fast forward to about the last month I took Harvoni and the pain returned in full and got much worse. Once I finished the Harvoni the pain and weakness very gradually subsided and now, about six weeks post Harvoni I'm better than I've been in years and what little that's left of the pain may just be I've got older.

[GLCII]

I'm wondering the same thing about the harvoni and RA. The joints and knuckles in my hands have been getting a burning stinging feeling lately. But then again, in my case, I guess it could be age.

[grateful908]

I'm on day 35 of Harvoni. About two weeks ago my hands swelled up to the size of softballs, literally. My finger was turning blue from my wedding band, which they wanted to cut off. My doctor gave me a shot of Prednisone, and a 10 day prescription. I was instructed to take it for 5 days only. By the fourth day, I didn't need it. My hands were back to normal. My Dr. ran different tests, and aside from slightly elevated sed rates, everything was normal. She did say it could be a reaction to Simvastatin, my cholesterol drug. She stopped that. I also had hypertension ( 145/150 over 90/95 ) I stopped Losartan on my own. Now my blood pressure is 125 over 88.  So all these things I supposedly had are normal now. Coincidence? Who knows. I don't recommend anybody stop taking their prescribed medications. I always thought the Drug companies over sold the benefits of their crap.Now I'm even more convinced. Other than the problems initially with RA symptoms, I feel great. It's almost as if I'm taking a vitamin every day. I have NO side effects what so ever.

[nadewitt]

Hi there,  I have been posting about my joint pain since week 10 of my 12 week Harvoni treatment.  Now my left wrist is increasingly painful, hot and swollen and my GI doc has referred me to a rheumatologist. It will take 6 weeks to get into see him and in the meantime,  I have been advised to wear a splint and take pain medication. Anyone else have this experience?

I am so glad to see that someone else is having this problem. Have you finished treatment? Did your pain go away?

[grateful908]

http://hcvadvocate.org/hcsp/articles/Bonkovsky-2.html

This link is an explanation of how the HCV can manifest itself. According to my research, most people with RA markers discovered thru their bloodwork, in fact don't have RA at all(again, see the link). I have suffered RA symptoms for years, and didn't know any better. Nor did my Doctor at the time( hence, not my Dr. anymore). I know someone with true RA, and she is in bad shape. My symptoms were more pronounced when I started Harvoni. My last episode was the worst. My Dr. gave me prednisone for 5 days, and I'm fine now.... I have about another three weeks of treatment with Harvoni. I'm kinda leery of going to different Dr.'s for everything that has occurred. Like I said, I've stopped the Simvastatin & Losartan, and I only take Harvoni now. I drink lemon water every day. I'm not sure if that helps me or not, but psychologically it is helping. I would be cautious on the painkillers. Go lightly, and ONLY if you have no other alternative. I did take a 1/2 vicodin and 400-500 mgs. of ibuprofen for awhile. No longer though. I don't drink any alcohol, and I'm eating a liver friendly diet. Here is another link for liver nutrition. https://www.glwd.org/serve.do/content/nutrition/illness/liver_disease_fact_sheet.pdf;jsessionid=D7BB08F692A696156B43B27578CCFB7D?property=Publication&aid=20853

 Good luck to you. Hope this is a good start for what you can gain as far as being knowledgeable to combat the HCV. 

[Kim]

I just achieved 12 weeks SVR so that's good news, but my joint and muscle pain is unbearable at times. I am going to a new Rheumatologist as the one I went to has no idea what is going on. I continue to have intermittent numbness in my hands and feet too. The quality of my life has certainly diminished as I was asymptomatic for 22 years before I took Harvoni. I could hardly get out of bed today - I am overwhelmed by these ongoing complications.

[grateful908]

Hi Kim.... I'm really sorry for your pain.. I wish I could offer some words to make the pains go away..... I'm convinced, after reading so many different posts all over this forum, that Harvoni effects everyone in a different way. I really don't know what to say anymore. My Dr. gave me prednisone and I cleared up my symptoms in 5 days.... Maybe that will work for you. I also was taking a vicodin and 500mg. ibuprofen to relieve the pain. Someone privately E-Mailed me and said they got relief from smoking a joint. I don't, and can't, advocate any of the above. That is your decision alone. I wish you the best, and please keep us informed of what your new Dr. diagnosis and prescribes. My best thoughts and wishes are with you.

[grateful908]

Hi Kim.... How are you??? Here is another link that might be useful for you.

http://www.ncbi.nlm.nih.gov/pubmed/11580301

Best of luck. grateful

[Kim]

Hey everyone, I'm not talking about HCV- related arthritis, but arthritis CAUSED by the Harvoni treatment.  I had no joint pain before I took Harvoni.

[KimInTheForest]

Hey everyone, I'm not talking about HCV- related arthritis, but arthritis CAUSED by the Harvoni treatment.  I had no joint pain before I took Harvoni.

There have certainly been others on these forums who who mentioned this in connection to Harvoni - no problem with arthritis-type symptoms before treatment. Sorry to hear you are having these problems. Hope it improves for you soon!

I am in the final stretch of my Harvoni treatment (just 17 more days - YAY!). No problems like that for me, for which I feel very fortunate. But everyone's body does certainly respond differently to these drugs.

best,
kim

[scott51-can]

Hi there,  I have been posting about my joint pain since week 10 of my 12 week Harvoni treatment.  Now my left wrist is increasingly painful, hot and swollen and my GI doc has referred me to a rheumatologist. It will take 6 weeks to get into see him and in the meantime,  I have been advised to wear a splint and take pain medication. Anyone else have this experience?

yes my finger and my back have been giving me pain since i stopped

[Andre58]

Hello Harvoni Patients,  All i know prior to the Harvoni treatment, i was a very healthy, active person.  Exercising regularly and feeling great, post treatment my right thumb is swollen and very tender, my right and left knee area have swollen muscles and are very tight and cant bend my knees and my right knee has a chronic tendon pain, very stiff.  This is not good. 

Prior to my successful treatment with Harvoni (7 months so far Hep C Undetected) i tried the Interferon injections 3-4 years ago with no success.  However, during that process they identified a Autoimmune issue and not take a Synthroid tablet each day to keep the system in check.
I am going to a specialist this week but I believe i have Rheumatoid Arthritis (self diagnosed).  The reason I have RA was what i believe was triggered by the Havorni treatment! 
I will keep all posted on the outcome.

Andre

[Mugwump]

I have confirmation that I do not have RA factors. However I do have swelling in the distal phalanges of my hands and general swelling in most of my joints.

My doctor did the RA factor tests and they came back negative.

So all indications are that it is immune reactions to HCV which have caused my arthritic and thyroid condition(s) long term. These conditions were much worse prior to Harvoni treatment and the stenosis between L4/L5 in my spine was so bad that I was using a cane to get around.

Now I have better muscle tone and strength. We can attribute these improvements to my liver and corresponding hepatic immune system functions no longer being attacked by HCV. The arthritis especially has become easier to deal than it has been in at least 15 years. 

Ten years ago post interferon treatment, I had to undergo 5 sessions of steroid injections in my back just so I could work. There were times that the pain was extreme for very long periods of time. It became so bad at times that even getting around turned me into a grump and I was losing all hope of having a reasonable life without too much pain.

There is no doubt  that there was some reactions in my system as my liver heals and there were joint pains and other effects that were flu like in nature during and post treatment.  BUT and I stress this, it was no where near as bad as when HCV was killing me slowly over the years!

I think it is false and very misleading to argue that Harvoni treatment alone can be the cause of rheumatoid arthritis. But perhaps individuals who have RA factors can experience increased immune reactions as their liver becomes more stable. Such is the nature of RA.

I thank my lucky stars that I do not have RA but can attest to the fact that long term HCV infection does cause many immunity problems and these problems can be very debilitating long term.

[Tania]

Hep c has been linked to RA.
Idescoverd this trying to work out my symptoms. 1 week post harvoni I woke up with all my joints aching. I don't have the rhumatoid factor show up in my blood tests but they don't have to for you to have RA .
It's most likely because of hep c but I wonder if hep c dosnt actually mask a lot of other problems due to how it operates. As soon as your immune system is left to its own devises it very well could start firing elsewhere. (Who knows right?)
But dam... my hands knees elbows feet. I'm sore all over. And public waiting lists for rhumatology are mega huge.
It's very sad if this is the case because I feel I might be swapping one desease  for another both awful.
At least hep c was painless. 
But it is it actually due to harvoni?  Or simply hcv that has stopped.

[Angelica]

Tania,

the problem with hep c is that as you get older the virus may become more aggressive. Also one can even develop non liver associated disorders, that is why I made the choice to be treated. Having said that, I understand how you feel. While I do not have such bad symptoms as yours, I do not feel on top of the world myself, I just hope it is a passing phase. 

[Igotmine]

I am about 9 months post harvoni actually started april 15,2016i did keep a lot g first few weeks tired and headache.  2 weeks into treatment. Scalp became itchy and started to develop plaques and my whole body itchy.  Like systemically  on the inside   Many are being gut bath.  Scalp became worse and see as fuel called dr not one reported this.  Let it known to optumvrx and Gordon then by 6Gilead wk left hand numb throbbing pain.  To this day I have folliculitis of scalp which change to thick grease build up to plaques. It confines my life tried prescriptions every otc shampoo for it ordered stuff on line and home remedies.  My rt hand is painful and with burning at shoulder. Left hand numb 24/7. I have not work since right before starting harvoni( new t related to this). I was an Lpn 20 year and loved my job pretty decent saving.  I paid for cobra and used up saving to survive me and my son. I finally applied for disability around nov 2016.    And will have first appt with disability Appt   April 24 2017
I do want to get better but also wandering is this related to harvoni use.  I prob will never be a LTc nurse again I can't even open bottle put car in gear or write good and in morning I can't hold a pen most days.    Peace love and happiness   And last 2 of third blood test last July undetected for having. HCV Yeah the next sentence was you now show early signs of cirrhosis.  Wow that messes with you mind. And it did not show 4 months prior have not had any blood since it cost 954.00 MY  dr said try to insurance and get in hear within few months...

[Igotmine]

I am about 9 months post harvoni actually started april 15,2016i did keep a lot g first few weeks tired and headache.  2 weeks into treatment. Scalp became itchy and started to develop plaques and my whole body itchy.  Like systemically  on the inside   Many are being gut bath.  Scalp became worse and see as fuel called dr not one reported this.  Let it known to optumvrx and Gordon then by 6Gilead wk left hand numb throbbing pain.  To this day I have folliculitis of scalp which change to thick grease build up to plaques. It confines my life tried prescriptions every otc shampoo for it ordered stuff on line and home remedies.  My rt hand is painful and with burning at shoulder. Left hand numb 24/7. I have not work since right before starting harvoni( new t related to this). I was an Lpn 20 year and loved my job pretty decent saving.  I paid for cobra and used up saving to survive me and my son. I finally applied for disability around nov 2016.    And will have first appt with disability Appt   April 24 2017
I do want to get better but also wandering is this related to harvoni use.  I prob will never be a LTc nurse again I can't even open bottle put car in gear or write good and in morning I can't hold a pen most days.    Peace love and happiness   And last 2 of third blood test last July undetected for having. HCV Yeah the next sentence was you now show early signs of cirrhosis.  Wow that messes with you mind. And it did not show 4 months prior have not had any blood since it cost 954.00 MY  dr said try to insurance and get in hear within few months...

[northfork]

If you have ever taken quinolone antibiotics, those could be causing you pain. I took Cipro 15 years ago and again 3 years ago. The first time was for bacterial gastroenteritis and the second time was for diverticulitis. I have experienced tendinitis and plantar fasciitis and tenosynivitis (sp) in the last few years. Stay away from that class of antibiotics if you can. They shred your tendons.

[HazelAustralia]

Hi all,

I am having a day off work today, sick, and I guess that is part of the reason why I ventured back to the forums to have a read and catch up on people's news. I must admit I have been feeling a bit down recently. I have very bad pains in my legs and knees and in the joint in one little finger, which is very swollen. I had a lung condition prior to Hep C treatment which was exacerbated with the treatment-related-anaemia and which never really bounced back. The other thing is, that my GP has  put me on a steroid free preventer for that now (well, I have tried two different ones, as the first was useless), so as not to place further strain on my immune system. The worst thing is that I am sometimes struggling to find the right words. I don't know what this is. I'm not that old, I don't feel more stressed than usual, but I am in a bit of pain with my legs and finger, especially at night. Hopefully, that's what it is. Otherwise, maybe I am not getting enough oxygen to my brain. I am glad I took the Vikeira, very glad. But I am worried about the joint and generalised bone pain, and wonder if my struggling to think of the right word sometimes is similar to the 'brain fog' that is mentioned here. I've had a series of tests since I finished treatment but the joint pain has only become bad in the past few months and I have only just admitted to myself that I'm struggling for words sometimes. Of course I don't think this necessarily has anything to do with previously having Hep C (what a great sentence!) or with treatment, but it may. Any feedback or ideas appreciated.
Best wishes
Hazel

[CureSeeker]

I didn't take Harvoni, but I did take Ribavirin, and went into treatment knowing that Ribavirin is a nasty drug with many potential side effects.  It can cause anemia in some patients.  Anemia produces oxygen-depleted blood.  Anemia also reduces the amount of red blood cells in bone marrow.  Oxygen-depletion and a lack of red blood cells naturally has a negative effect on bones.

Osteoarthritis is a normal part of the aging process for anyone age 45+.  Earlier in age at any healed fracture points.

High RA/RH factor is linked to RA (genetic pre-disposition).  Anemia is linked to RA.  Ribavirin is linked to RA.  HCV itself is linked to RA.  I'm not sure how many other things are linked to RA, lol.  For that matter, how many things is RA linked to?  My cousin worries about its connection to Lupus in her future.

Rheumatoid Arthritis exists in my family at least back to a great-grandparent, and probably much further than that - its just that no one is still around that might remember.  I was tested prior to treatment, and know I have a high RH factor.  I have an estranged cousin who was diagnosed with RA as a child.  Upon learning this, I asked my doctor to test me (at age 50), as I have experienced pain in my neck and shoulders since I was about 3 years old, but never anything severe enough to go on a medical crusade to find a cause for it.  It's just something that flares up every now and then, and I grew to live with.

Our bodies are adjusting to the effects of losing a virus many of us have carried around for decades.

It can take 2 or more years to rid any negative effects of Ribavirin from our systems.

I have gone through a cornucopia of adjustments for the last year and a half, but all and all feel much better and think much clearer than I did before treatment. 

I still suffer from bouts of fatigue, and that causes me some brain fog from time to time.  It is logical to assume that if my body is tired, then my brain is tired too.

Hindsight being 20/20, if I had it to do over again, would I elect to continue to go without treatment?

NO!  I would not.  I have seen first hand what not getting treated in time can do.  I can live with these symptoms, but I cannot live without proper liver function, which effects every part of our body since our ability to eliminate toxins from our body is compromised.

It took decades for our bodies to adjust to being infected, and could very well take decades for our bodies to adjust to no longer being infected.

All this focus on finding an issue with Harvoni seems odd to me.  Then again, perhaps its a 'side effect' of more use of the drug.  Just like we report and dissect every symptom and change we experience post treatment, perhaps some of us that went into treatment without making ourselves totally aware of what we were getting into also want to question the drug.  That's normal - human nature.  Questioning is how we learn.

As for law suits - given the connections and variables already presented, I don't see how anyone could win one.  As for me, I am just grateful to know I will live longer and not be able to unknowingly infect others.

I would add that there is an old saying, "If you look for a problem, you will find it, because even if its not really there, you will create it."

Relax and heal.  Just my 2 cents. 

[D63]

Hi Kim. I am 3 months negative after end of treatment. During my treatment of just 8 weeks, I started having pain in my right shoulder. It is necessary to mention that I had been minimally active physically before my treatment. I did weight lifting and cardio exercise at my gym. I stopped the gym in December, last year. I had left shoulder pain tendonitis which healed itself before beginning Harvoni solo tx that began late January. On February 14, I woke up with pain in my RIGHT shoulder, which I dismissed as part of the "normal" aches of the tx. I did normal housework, as much as my energy would allow and I was sedentary during this treatment between housework- cleaning, dishes, vacuuming, cooking & dusting. All of this motion on my dominant arm was aggravating it but I continued anyway. Today is July 6th. I had an ultrasound on both shoulders. What it showed was calcification of the large head of the tendon with thickening of the supraspinal tendon. In other words, a frozen shoulder. I cannot sleep well, I have very limited range of motion, it is painful at rest. It is painful to put on and take off a shirt, pull up pants, shower. So, I wonder how I got the calcification and the shoulder impingement or frozen shoulder when I wasn't lifting heavy weight? Was it repetitive motion? Did the Harvoni cause me to be prone to something which I didn't know was already there but didn't feel pain? Hep c is known for RA mimicking.
My rheumatoid factors are very low. No cryo, although I was positive before tx, but negative now. My thyroid number is elevated but not significantly. The pain moves down my arm and now the thumb is involved. Bending it is painful, as if there's pressure or it's swollen but it appears normal compared to the left thumb.

What I know is that this wasn't there before and that it happened overnight, seems odd to me. And the doctors here are very defensive when I suggest any connection to Harvoni, even though Gilead's Harvoni drug information given to Canada, states very plainly: muscle strain, ligament sprain, meniscus injury, arthralgia, joint effusion, muscle spasms and weakness. I don't know what drug monograph Gilead gave to Spain, the USA or the Canadian monograph. I have both.

Looking toward some other procedure caused me to come back to the forum and poke around. I guess I'll continue. I hope that it's just a matter of sloughing off dead virus, the Harvoni leaving and the normalization of organ to organ communication and equilibration of hormones, enzymes and other signals that had been impeded by years of HCV.

I really, really hope that you do feel better and things improve without any other problems or procedures.

[northfork]

Wow.D63... I have had plantar fasciitis for a year and meniscus issues, plus pain in the opposite knee, maybe from favoring the foot with fasciitis.

[BattleTheBeast]

Hi Kim,

I am 2 years post treatment and boy has it been a roller coaster for me. While my Hep C is "cured" I have totally suffered with major body pain. I went to 4 specialists and they all told me it was Fibromyalgia and to keep moving so it's not as bad. They initially said RA to me as well. Finally on 3/29/17 I ended up having a Heart Attack; at that point I was given 2 stents to clear my majorly clogged arteries and after the procedures my body pain was virtually gone since my body was finally getting the blood and oxygen it needed. Please have your cholesterol checked and I'd also recommend the AFP Tumor marker test; my numbers actually have decreased from 6 to 4 which is a good thing; it's an easy way for them to monitor for a very aggressive liver cancer. Just my two cents after years of misery; I hope you find some healing soon!

[D63]

Thank you, Battle. My cholesterol levels are between high normal and normal. My last glucose was up a notch but that's in the side effects list of Harvoni, so is high cholesterol. Check the Harvoni drug monograph for Canada. I won't post it here but the URL ends with a .CA

Tendonitis, as I have learned is common among people with hypercholoesterolemia, so I've read. I don't believe everything I read. Some studies in my opinion are a shoo-in for pharm. Arteriosclerosis, plaque in the arteries, are also composed of calcium. It seems, according to studies that people with high cholesterol have a greater chance of developing muscle/ tendon injuries. Let me be precise: I never read the exact level of HDL and LDL that supposedly contributes to this. But it's available to read and if you do, post it, please. But, that's another shoo-in for statins, a drug they give to lower cholesterol, which has side effects that require more drugs to treat those sides and, ad infinitum, until no one knows what's wrong with you because the first disease is buried. It's called "buffering the disease," in medical terms and this is a term that many patients don't know about. Use it with your doctor- see what happens. Did they ever do a test for calcium deposits made by high potassium, or fluoridated water? Anything else? I made a comment on another thread here on this forum: "Harvoni deep vein thrombosis" I usually try to post my handle: d63, before any posts, just for me to keep track of. I'm specifically targeting people geno 1a, tx naive, whom have had no prior "diagnosis" of calcified tendinosis or tendonitis after treatment. It's very specific. I don't expect much to match my criteria but your comments are always welcome and I thank you for elaborating on this part of your therapy. It's important to get a full spectrum. After reading so much from many, I decided to try something more specific. I started a thread poll. It's all under D63.
I feel your 'effing pain and frustration- oh, did I say FUCKING? I'm sorry. Just do what you can on the home front, try to avoid more meds. I'm waiting for the socialized estab. to send me a special card to get the MRI, that I requested from my first M.D. I left behind 3 months ago, or it wouldn't be until next YEAR to get a diagnosis. I wish you well and may you have patience and ENDURANCE during your moments of frustration and above all- suitable COMPANY to voice your concerns and to simply, be HEARD. Thank you. Warm caresses upon those achy- breakies.

Giant HUGS

[CureSeeker]

And here I was thinking all ya had to do was exercise and eat right...*slaps self upside the head*

I found a link on how something as simple as weight lifting causes tendonitis.

http://www.livestrong.com/article/265852-lifting-weights-tendonitis/

And, here's a link claiming calcium deposits in tendons happen more often in women than in men, and are most often sports related.

http://www.webmd.com/a-to-z-guides/tc/calcium-deposits-and-tendinitis-calcific-tendinitis-topic-overview

Go figure...

[D63]

Yeah, I read those articles on Live Strong and WebMD. Makes sense. In the past year I did have a weight lifting-related bout of tendonitis in the LEFT shoulder before treatment Harvoni, very similar to what's going on in the RIGHT shoulder now with no weight lifting at all and no gym membership- expired. I just hope that it resolves itself the way the LEFT shoulder did. I guess I was vacuuming the cat hair off the sofa too aggressively? I'm THAT fragile? In my X-Ray, it shows my humerus bone up in a higher position with no space between the humerus and acromion, compared to the image of the LEFT humeral bone which is in the correct position with no pain, heavily calcified, however with significant space in the socket allowing for total range of motion.
Really, in some ways I actually felt better while ON the Harvoni than off.
I'm inclined to consider what mugwump said in an earlier post, and I grossly paraphrase, that after the virus is dead, the glands and organs are all finding their way back to their normal functioning, responding to the conditions left in the wake of the virus after it's death and on the other side, re-establishing the normal parameters of glandular secretion, i.e., thyroid, hormonal secretions; the other organs, heart, pancreas slowly regaining their functions in absorption of minerals, neuro-chemical pathways. It's like a total overhaul of the system and then there's the liver & kidneys, breaking down waste, toxins, fat, sugar, etc. hopefully the liver is regenerating as studies are showing. It's like an old orchestra getting back together and tuning up.
I live with a healthy person, it's easy for me to make unreasonable comparisons about what I can and can't do and to accept that I could be just a little more fragile at the moment than I used to be, that I may not be up to par with the "healthies" running around me. I just have to say, not that any of you don't already know, that pain is an energy sucker, a drag, and I project that if I can't tolerate myself then maybe others can't either. That may be true up to a point. The "healthies" can't relate to me the way you guys can. And, so . . .  scooby-dooby-doo. I just can't wait to be a "healthy" again! Patience.

[CureSeeker]

Yeah, I totally understand, D63.  Don't worry about keeping up with others.  We all have to march to the beat of our own internal drums.  With any luck, it won't be long before you are leaving the "healthies" in the dust - but, don't rush it.  Slow and steady wins the race.

We are so focused on a disease and the side effects of its cure, that we sometimes forget that even if we never had HCV - crap would still happen to us.

I recently woke up one morning feeling like someone had wedged a knife into my left knee and right ankle.  Then, after about 3 days, the pains left as suddenly as they had appeared.  At this stage of the game, I've learned to just roll with this kind of thing.

Also, more than a year overdue for blood work, I suddenly started to feel pain in the area of my liver, and swollen in my abdomen - or so I thought.  So, I scampered right off to get my bloodwork done, and to complain about my new found symptoms.  I thought, "Damn, I've probably relapsed!!!!".  Turns out I didn't, and haven't experienced the pains since I found out I'm still not-detected, lmao.

Psychosomatic?  Maybe...*shrugs*  Another phantom occurrence of a body still in adjustment?  Probably...

I still have issues with being gassy.  *glances in the direction of Mugwump and giggles*

But, I've changed my diet and started reading up on an Ayurveda diet.  Found an explanation for the abdominal pain.  It turns out, according to Ayurveda, that the body and its metabolism are sluggish coming out of Winter.  Made sense to me.

Spring is the time to cleanse and reset our metabolisms.  Cleanse meaning a change in diet.  And, maybe the dietary changes are the reason I am no longer experiencing the pain I had just before and while waiting for my bloodwork, and have managed to lose 10 pounds over the last month - making my belly seem less swollen.

I'm learning more about Ayurveda now, and if I stick with it, may go for certification.  Turning lemons into lemonade - which is nice, on a hot Summer's day!

Good luck with the tendonitis. 

[D63]

Congratulations on your weight loss, CureSeeker. There is something to be said about ayurvedic and I hold it in high regard. It's time for a cleanse. I've had my heart set on wheatgrass and I found a place here in Barcelona, it's a new thing here. Back in the States I drank it a lot. Ayurvedic, on the other hand has synergy with the body. And the gas you're talking about? I still get bloated occasionally and the flatulence is at times so loud it scares the cats off the bed! It's like fireworks. Butt crackers, as we refer to them instead of fire crackers.

Curing this, is a big step, a courageous step especially with newer drugs and I commend those willing to try clinicals. And it is easy to focus on the sides and if it wasn't HCV, it could be something else. Now, if they actually found a cure for pain, all our troubles would be over. It's a sign that things are not right, a warning that causes chronic worry when it doesn't go away. But sometimes it does. It's catterwompuss. The arm woke me up and kept me awake so I gave in. I'm typing this now and then put on an original Star Trek episode I've seen 4,000 times with the hope it will put me to sleep for an hour or two.

So sorry about the knee and ankle stabbing. Not fun. But as you say you roll with it. It's going to be like taking up temporary residence out in left field, out of the blue, reaching out to give chaos a loving embrace. Well, again, great you got your weight down. I dropped 8 lbs in the last two months. I've had fantasies about taking a serrated bread knife and slicing off the love handles, *laughing* not a "cutter" but it's imaginable.



Now I have the yens for lemonade, thanks to you!!!