Hepatitis C: Post Treatment Issues Community
joint pain
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This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

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joint pain

I HAD HEP. C IN 1997 AND TOOK INTERFERON FOR 6 MONTHS AT WHICH TIME I COULD NO LONGER AFFORD THE 700.00 A MONTH FOR THE MEDICINE. MY HEP. HAD BEEN INACTIVE FOR 4 MONTH BEFORE DISCONTIUNEING THE INTERFERON. AT THIS TIME THE HEP. IS STILL INACTIVE.  I STILL HAVE ALOT OF JOINT PAIN  AND STIFFNESS AND HAVE A DIFFUCULT TIME WITH DAILY LIFE.  I AM 44 YEARS OLD  AND FEEL LIKE I AM 90. I WAS WONDERING IF THERE IS A CONECTION BETWEEN THE JOINT PAIN AND TAKING THE INTERFERON BECAUSE THIS IS HOW I FELT WHEN I TOOK THE MEDS. I FELT WONDERFUL FOR ABOUT 6 MONTHS AFTER TAKING THE INTERFERON BUT FROM THAT POINT ON I HAVE BEEN MESSERIBLE. I HAVE TRIED ARTHRITIS DRUGS AND PAIN RELIEVERS BUT NOTHING WORKS UNLESS I DRUG MY SELF  HEAVLY.
DOES ANY ONE ELSE HAVE THESE PROBLEMS? THANK YOU TRINTY
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35 Comments Post a Comment
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Avatar_f_tn
when you say inactive, do you mean you are clear(no viral load)?
the term inactive for chronic hep c does not really apply, if the virus is present, it is working on your system.
There are a couple of threads before yours, one on pain and the other on post tx residual effects that you might want to read.
I had joint pain before tx, that has gotten slightly worse on tx. I believe my pain was due to chronic hep c, initially. give us a little more info on your case, please.
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Avatar_n_tn
This is an issue that many of us are now wrestling with.  First question, as asked above, did you eradicate?  Are you still undetected for the virus?  It seems that more than a few people who have achieved SVR in the recent few years are now surfacing with questions about on-going joint pain.  I am one of those people.  I am almost 8 months post-tx, SVR, and am now having more and more episodes of joint pain, and related 'autoimmune-like' reactions.  I am not sure your questions can be adequately answered at this time.  There is not yet enough information out there regarding ongoing after-effects of interferon/ ribavirin therapy.  Some seem to slowly resolve their pains and side effects during the first year or so after tx, but more and more I am reading posts about lingering, often very nasty, side effects.  Joint pain seems to be a central manifestation.  I am pursuing thyroid testing by specialists, since it appears that even mild thyroid disorder MAY contribute to joint aches and pains.  There is not a lot of consensus on this issue.  I tend to believe that we have 'kicked up' some generalized auto-immune disorders, and I am not sure if or when they should fade away.  It may just be a new fact of life for some of us!  Not a good prospect, but I still prefer having a liver that is not flaming out and is no longer taking us down the road toward a slow, nasty demise.  Hopefully they will figure out how to treat the nastier sides after tx, so that we can feel like we have recovered our HEALTH, along with our lives.  Keep us posted from time to time as to your progress, etc.  We will all continue to discuss these  issues, for those so affected.  Best of luck in the future.
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Avatar_n_tn
My husband has hepatitis C and has had it for probably over 30 years.  He was finally diagnosed in the early '90s.  He never really had any symptoms of joint pain until after taking the interferon/ribavirin combo 5 or so years ago.  His hepatitis did not respond to the treatment and his doctor wants him to try the Pegasys or PegIntron treatment.  His main complaint now is joint pain.  His doctor suggested Tylenol for the pain and he will take it at times but is afraid of the side effects of that.  I don't know if it was the interferon/ribavirin treatment or just 'old age' :}  We're both in our early 50's.  I have searched the internet trying to find alternative treatments but so far I'm skeptical about some of them.  I've heard that milk thistle will help certain aspects of hepatitis but will not cure the disease.  His genotype is 1A and his viral load is over 1,000,000.
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Avatar_f_tn
I am glad you posted back with more info.  If you have read here for  a while, you might know that there are a few here that treated more than once before achieving svr.   there are also other tx repeaters who did not even respond.  I am also in  my 50's, 1a, low vl pre tx, on week 47 going for longer to ensure my cure.  My joint pain started with my last pregnancy, escalated until I finally got dx over a year ago with hcv.

best wishes with your husband's illness
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Avatar_n_tn
My husband has Hep C genotype 3a and has had it for over 25 years.  I have read that late stage liver disease can cause the joint pain in some.  My husband got his joint pain in his wrists and knees to the point it was unbearable.  He thought he had Rheumatoid Arthritis.  He was treated for that for a year.  Then he saw another doctor and was diagnosed with Hep C.  He did the Pegasys treatment for 24 weeks, responded, then relapsed after treatment.  He had joint pain before, during, and after treatment.  He was so ill after treatment. His doctor put him on injections of Enbrel at home every 3 days and this has helped him tremendously.  He also takes a warm bath in epsom salts or sea salts two times a day.  He has been able to go to work with these treatments.  He also found that eating cherries helps.  He was tested for gout and didn't have that, cherries do help gout, they say.  He plans on taking the Pegasys treatment on a daily basis starting in the fall for 48 weeks.  We are dreading this.  He was a basket case while on it for the 24 weeks.  We are hoping that the Enbrel injections will help the arthritic symptoms he has.  We realize that if the joint pain is an offset of late stage hepatitis C, then he may have to accept it as a chronic problem.  It doesn't make it any easier to accept, though.
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Avatar_n_tn
Before I tx'ed, I couldn't open a door or hold a pen.  As soon as I cl'ed @ day 18, my joint problems started to resolve themselves.  I fin the full 24wks-just the drugs, not doing nothing in my system since the virus was dead, and now have the flexibility I lost 10 or more yrs ago.  So, I seemed to have the exact opposite post -tx result that you guys are talking about.

As w/everything else about hep c and tx, the results from one person to another can vary widely.
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Avatar_n_tn
After tonight, only 7 more! I started doing a Vioxx 3 hours before the shot, and the whole experience seems easier, without the joint pain.

I know you have had all that difficulty with Lymph glands.
This week was the first time I noticed the glands on my neck, right under the jaw, were swollen. Also, it seemed to cause a little difficulty swallowing. It's better this morning, but should I have the Doc check it out?

Steve
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Avatar_n_tn
maybe you're right about the riba...it would be nice to know since the only thing I noticed the riba doing was making me itchy and irritable...small price to pay for healing of joint pain and constipation! I like your theory!

Sioux, I really hope you feel better and this passes.

Gotta go clean my house some more. It's on the market and I'm told people are coming tomorrow. I'm hoping it sells soon... it's just one more unknown in my life that is wreaking havoc with my finances right now. Well, I guess all this cleaning is good for the soul anyway...but it would be nice to know the house is sold.
Have a great wknd, judi
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Avatar_m_tn
re: stools - I have noticed that as a result of tx that stools tend to become 'drier' and more consolidated - probably as a result of the dehydrating effects of the medications. I am one who eats a heaping bowl of fiber cereal every morning - to stay a 'regular kinda guy'. Immediately upon beginning tx, things 'tighetned up' (so to speak) - and have remained so.

As far as tx 'curing' this condition and your joint pain? Anything is possible - and hopefully that is the case. But I'd give it time after you complete tx - and wait to see how things 'settle out'.

Personally, I'm expecting the kind of changes we are discussing to return to their pre-tx state as my body re-adjusts to no more meds.


Enjoy it while you can! (pun intended)


TnHepGuy
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Avatar_n_tn
I would love to take that walk!

I've noticed that ever since I tested "Undetectable" at 12 weeks, my energy is returning. I no longer get out-of-breath when climbing a few stairs, and there's been very little nausea feelings. I know I can't run a mile, but I think I'm starting to return to normalcy. What is surprising is that I didn't expect to feel better until months after treatment. It must be that just eradicating the virus from my system, has made me feel a little like my old self(parden the pun).

Steve
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Avatar_n_tn
It's so interesting to read everyone's symptoms, because there are such huge variations...My experience is similar to New Sojourn's. Before tx, I too, often found I couldn't open a door or hold a pen. For about 8 years prior to tx I suffered severe joint pains and couldn't have managed without lots of heavy duty drugs. I also went through lots of physical therapy. I now believe that all these pains were due to chronic persistent hepc. When I began tx 6 months ago, I was dealing with lots of side effects and only noticed several weeks into treatment that I had no joint pain whatsoever. I still don't. Those aches and pains have literally disappeared. I don't know what to make of this because they were so much a part of me for so many years. It doesn't seem to have anything to do with clearing because I didn't clear until a few weeks ago...I've asked my docs, and we're all inclined to think those pains were a direct result of the hep c...but I can't say so definitively. I'm just glad they're gone! As to  loose stools, (Chevy and TnHepGuy) pre-tx I always had severe constipation. Now along with no more joint pain, I am no longer constipated. Except for strange color, stools are much improved. (there have been a couple of times I had bad diarrhea and vomiting, but they were temporary, probably a bug. Lymph glands don't appear to be affected in any way. It is really weird how differently we all react, isn't it?? Everyone have a great weekend.
Judi
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Avatar_n_tn
I too have had joint and muscle pain prior to tx. Like Chevy, I have a very high pain tolerence. And also had migrating pain to different areas. My pain got worse on tx. And still is after tx. I have noticed weakness in my hands also.
I will be seeing a rheum. doc in a few weeks. I do take Vioxx for pain a few times a week and it does help some. The worst persistant pain is in my shoulders and rt. knee.
I am very stubborn when it comes to pain meds... I HATE to take them.
Here's to a PAIN FREE day!!!
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Avatar_n_tn
Please read the post I wrote below to Shanana under the thread titled "Pain".  

Susan
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Avatar_n_tn
Thank-you both for writing.  We will try the SAM-e.  Good luck to you with your treatments.  Hopefully someday we can all come back here and celebrate cures.
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Avatar_n_tn
Hope you got my note.
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Avatar_f_tn
I have been diagnosed with hcv and underwent treatment with interferon and ribavarin for 2 weeks, my cell count began at 3.8 million, after the 4th. and 12th. week blood test done there was no trace of the Hep C ..thus far ...at week 24 of my treatment...(now 60 days finished) my right hip and right leg is in severe pain,to which I can't hardly walk,a heavy feeling to my leg, ( I actually have to lift it myself ) I walk with a limp, my leg n hip will locl up  on me..even thru sleep......we need to find out why this is happening....!!! When I mentioned this to my hepatologist he stated that there should be no pain with hep C treatments and he never heard of this prior to my acknowledgeing him....please keep us posted....bEST WISHES, SANDY801
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Avatar_f_tn
THIS IS SANDY801 ...MY TREATMENT FOR HEP C LASTED 25 WEEKS...OOPS ON THE ABOVE MISSPELL..
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Avatar_m_tn
I took the treatment 4 years ago and am now a total invalid.  Symptoms began with joint pain about 3 months into a six month treatment plan-depression, olcrannon bursas on both elbows.  Now I have been diagnosed with chronic fatigue, fibromyalgia, chronic major depressionAdult ADD, major anxiety dis-order.  I had a blood transfusion in 1968 while in the military and had a tatoo.  Never used drugs; a family man and athelete-ran 2 1/2 miles before treatments began.  None of my doctors will admit it was the interferon with the exception of my Psychologist who has a PHD.  He said the doctors will neved admit it but a small % of mis-fortunates like myself will never recover and some end up committing suicide or end their days in a hospice.  There is no relief other that morphine or Hydrocodiene and that leads to addiction and death as well.  I hope no one is suffering as I am if anyone is contact me. franke566. thank you, God Bless and Good Luck
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Avatar_f_tn
What are the symptoms of hepatitis C? Is it similar to Hiv. I have UTI and i have somejoint discomfort especially in my legs. I have lower back discomfort. I have loss weight. My legs well firm but now  there getting smaller. Could it be hepatitis or hiv ?
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Avatar_n_tn
My husband is 51 and had interferon treatments for his hep back in 2006 (9 months of treatments).  Hep is gone, no sign of it.  I'm frustrated with his health and now realizing it may be post side effects.  He has psoriousis badly on legs and head, muscle and joint pains(which are kept undercontrol with pain meds), low irritation threshold, depression (taking zoloft), and I'm realizing memory loss.  Are these possibly related to the treatments?

Frustrated Wife
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264121_tn?1313033056
I am 14 mos post tx.  I had horrible joint pain for the first time in my life during tx.  It continued after tx, but seems lately to be episodic and spaced further apart.  So I am guardedly hopeful that it is improving instead of devolving.  I am personally factoring in the fact that I have an iron overload after tx due to blood transfusions during tx.  This is the second time in my life with a high iron load so this may have something to do with the pain also.  It may not all be due to the tx drugs.  
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Avatar_n_tn
Hello there!

Well this is eye opening and concerning at the same time! My hubby will be starting treatment this friday and he has cirrhosis of the liver,  hepatitis C -geno 1 and a viral load of about 650000. His platelets are at 70 that is why he will be starting the clinical trial drug Eltrombopag to boost his platelets upward  

Why I am concerned is he is in construction and has been undergoing terrible pain in his knees for the last couple of years progressively getting worse so it does seem like it is a symptom of the hep C which is causing this joint pain. With that I look forward to the drug as it has to produce better results for his knee pain then what he has been undergoing!!!!  

As soon as his platelets get up he will be starting the interferon!  I am crossing my fingers and praying that he does not get sick or worse when he starts this treatment!

Thanks for all the great information.
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Avatar_m_tn
Beware of blaming the hep c for all ailments..Many folks complain of joint pain from the treatment itself, not the hepc. Also, has your hubby been checked for arthritis?
I had joint pain prior to treatment, while having the active virus and after treatment when virus free...the culpret---osteoarthritis

a general contractor,
Pro
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Avatar_n_tn
Hi
Well I can't blame the many aches and fatigue on the treatment cause he hasn't started the treatment yet but will be in the next coming weeks.  No he has not been checked for arthritis....that is a good point!  Something to think about. I was just hoping since he had all this joint pain now it would dissappear once the treatment started or completed??
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Avatar_f_tn
I took interferon and ribavirin for 6 mnths for hep C.  over 2 yrs ago now.  I cleared the virus.  The treatment was almost intolerable.  I now suffer from acute joint pain in my hips and sometimes knees.  Not sure if this is related to my treatment or not.  Prior to treatment I actually felt fine.  If this pain is a result of treatment I would rather have the hep C back.
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Avatar_f_tn
I only tolerated 4 months of the combination therapy. My viral load was undetectable at 3 months, however it gradually went up over the years that followed. I had absolutely no symptoms before I went on the medicine. For two years after I kept telling my doctor that I feel like I am back on the medicine when ever I get run down and tired. I get short of breath, and now have severe joint and muscle pain. Every time I asked my liver doctor about the symptoms he would say the medicine is out of your system it must be something else, check with your primary physician. I see the liver doctor once a year and stopped asking about it after a few years. Recently I had blood work that indicated my Rheumetoid factor was high and an antibody, TTG IGA, was high. They said I had celiac disease. ?? I think it is strange that I feel the same way I did on the interferon/ribaviron therapy. Something is not adding up!
very frustrated, Jen
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Avatar_m_tn
I agree. I had tx in 2004. Had hep c for roughly 15yrs prior. Damage to my liver wasnt as bad as first thought. Just a little scarring and inflammation. The tx lasted 6mths and I responded really well even after 4 weeks. Got quite depressed during the treatment though as I had to attend hospital every single week as my nutrafil count was dangerously low so an infection could do me real damage. (If you want to stay away from infections, is a hospital the best place to avoid bugs?!!!)

I had an okay time physically compared to others during the tx. Cleared the virus, had follow ups every six mths. After 5yrs, been discharged from the clinic as "cured". Only problem is I am suffering from severe multiple joint pain in hips, lower and upper back, ankles, right knee(worst) and left wrist. Been tested for arthritis and osteo blah blah but they keep telling me i am fine. I'm not. I am not sure if it was the treatment itself(combination therapy) or the disease itself(hep c) that has caused me this constant pain. I'm only 38 and feel like 88
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Avatar_f_tn
Hi! Hey, just to let you know, this is a very old thread. Can you paste this into a new post under your name so we can all get to meet you? :) ~MM
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Avatar_m_tn
MY NAME IS BLESSING  I HAVE TAKEN INTERFERON AND I HAVE JOINT PAIN. I HAVE BEEN OFF SINCE MAY, 2011  AND MY KNEE AND LEGS ARE PAINING REAL BAD . I HA BEEN TO MY DOCTOR , AND SHE TAKE TY. PAIN PILLS  AND IT DON;T WORK
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Avatar_m_tn
iMY NAME IS BLESSING  I HAVE TAKEN INTERFERON AND I HAVE JOINT PAIN. I HAVE BEEN SINCE MAY AND MY KNEE AND LEGS ARE PAINING REAL BAD
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Avatar_m_tn
I am a 62 year old woman with hepatitis c. I found out 3 weeks ago that I had it.  I do not have good insurance and do not want to lose everything just to get treatment if it is just going to get worse.  I have a lot of joint pain, but have had this for years.  Has anyone found any over the counter drugs to take for the pain?  I do not plan to get treatment as the effects seem to be worse than the disease.  I have already had to pay for blood tests and ultrasounds, and just cannot afford to treat.  Any suggestions would be welcome
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766573_tn?1365170066
Hi sorry no one responded to this post or your other one. These threads are very old so it helps to post Post a Question rather than Post a Comment (if that distinction makes any sense. Like this:

(click on this link)
http://www.medhelp.org/user_photos/show/292342?personal_page_id=414409

_____________________
There is no real way to determine your joint pain is the result of Hepatitis C. There are meds you can take for pain and/or inflammation but I would let a doctor prescribe something for you. Other than that lots of us take Tylenol. I know that might sound completely opposite of what you would think since you have Hepatitis C (HCV).

Have you received the results of the ultrasound you mentioned in your other post?

Treatment may not make things worse as there are newer, less harsh meds that will be available within the next few years that will make treatment a lot easier to tolerate. It might ease your concerns if you follow through with a Gastroenterologist (GI) or a Hepatologist.


There might be ways you can qualify based on income but it all depends. I know you have paid a lot out of pocket and I wish there was a way to follow this through so you make an informed choice.

Please, please please re-post your question. Many people on here have been in the same boat. You do not have to go through this alone and it sounds like you kind of have some misconceptions.

Hang in there and re-post!!
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Avatar_f_tn
I believe it's a result of the treatment. I too am experiencing the same. I am now on Humira and it has cleared me 98%.  You can call Abbott manufacturers and discuss how to obtain Humira free if you have no insurance.  

I don't know what kind of doctor I need for the joint pain.  It seems to move to a new place every morning I awake.  Never know how I will feel from one day to the next. Nor, do I know if I'll be able to go back to work. I'm depressed and frustrated. But to me the trade off was worth not having to die a slow agonizing death from a hardening liver.

God bless us all.
Alicia
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Avatar_n_tn
Ten years post successful treatment I still have severe chronic joint achiness in my legs.  Has been diagnosed as fibromyalgia or auto immune disorder.  Am on methadone for 6 years now-I don't know what is worse-the pain or being a slave to the meds now...
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1815939_tn?1377995399
I responded to your post in the other old thread. This is also an old thread. Please go to the Hepatitis C: Post Treatment Issues forum and post a new question. You will get more responses that way.

http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670
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