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4226456 tn?1354119928

Post Triple Therapy Side Effects: Joint Pain/Stiffness

Finished triple therapy Jan 28, 13. (early) due to side effects and now I am experiencing joint pain, stiffnes that
started a couple months after treatment.  
When I sit for any period of time, my hips are so stiff and my feet are stiff too. My feet feel like they can't hold me up. Ambulation is not so easy. After a few moments of being up on my feet and walking the discomfort and stiffness goes away.  I am also experiencing wrist pain, carpel tunnel type symptoms in one hand that I dont use much for writing or anything.  Wakes me up at night.  I am not over weight and I am very active.  I don't understand what is going on.  I was checked for autoimmun diseases and that was negative.  My hep doctor denies any knowledge of such side effects post treatment and tells me this is what happens when we age.  No way. No Way!  I have worked out my whole life and am very active, before treatment I did kick boxing, zumba, weight lifting, pilates and yoga. No I can't do those things yet to the degree that I was before, but I am working on getting my strength and endurance back.  I understand it take time, but...
Is any one else experiencing joint problems after treatment?  What have you done to treat and did you get back to normal?  I started taking  supplemts: glucosamine, chrondroitin and msm to try and help but not so far.  Triple therapy turned my body inside out and although I am feeling much better then I did when I was on treatment, these side effects are new to my body.  I feel like an 80 year old instead of an active 50 something..  Thank you for any advice or sharing of your post treatment new side effects.
Best Answer
Avatar universal
Hi,
It really does take time and if you were once an active person I am sure you feel impatient.
I believe my joint pain which was severe was a result of HCV. However, I felt so bad during treatment I was barely mobile which I believe worsened my condition.
I have  found gentle or restorative yoga to be helpful. My joints had hurt so bad I as afraid to exercise them for a long time. I began to swim and when I found the movement to be pain free, it gave me the confidence to try the yoga moves. It is helping.
Like I have been told countless times, be patient and just stay with it, when you find the that exercises work for you.
I believe in time you will improve.

I wish you all the best.
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7002065 tn?1443073614
I would try Curcumin (CURCUFLEX) to calm down inflammation. that should help! Also, try out to get Amitriptylin!
All the best !!!!!
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Avatar universal
my husband completed 6 months of the Triple therapy tx 18 months ago. He is free of the dreaded HCV as it has been undetectable , but he now has aged 50 years, in constant pain especially in his hands and arms. They swell up and he says it feels like his arms under the skin feels like open painful sores. He has tried cymbalta which did no good (although I think it helped his mood) but it tightened up the muscles around his rib cage. Then tried Lyrica which he says is doing no good. Just recently started on allopurinol as his PCP noted elevated uric acid levels. This is not new the rheumie Dr dx him with psuedo gout over a year ago. The pain does not allow him to sleep and he gets crabby. I am so happy to see we are not alone in this and look forward to seeing what works for others. As a nurse i feel helpless as to how to help him the neurologist does not know what is going on, I feel I have to go to his MD visits and request the lab work that I feel he needs, or his PCP would not have checked his Vitamin D or Uric acid level. He is now on cochicine and Allipurinol hoping this combo helps alleviate some of his pain as he does not want to take the recommended anti-inflammatory drugs for fear it will damage his kidneys. This mixture of drugs is the worst wish he could have held out a little longer for the newer drugs on the market that erradicated the HCV virus with fewer after effects. He now feels like he made a mistake and would have been better of letting the HCV take over. I am trying to keep him encouraged but it is hard. Thanks for letting me vent!
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4226456 tn?1354119928
There are many of us who are not recognized as side effects from treatment, experiencing the same.  Maybe we were predisposed to these symptoms and triple therapy wore us down to a point allowing them.  My test were negative for autoimmune causes.  I am 1 1/2 year post tx, my hips do not hurt, my joints still slip in my hands, feet & spine but it is not an every day occurance.  So I feel I am getting better. I have joined a gym.  Weights, stretching, zumba...  all seem to hel.  I hope as I continue to strengthen my tendons, muscles and joints it will go away.  I was asked to contact the Interferon & Incivic Pharmacy support RN's after a year for FU, because of the severeity of my symptoms.  So I did call and let them know.  Not sure if any of the information went any further, never heard.
Hang in there Colleen!  You are not alone!  I believe we will continue to get better!  Congratulations on your SVR status!  
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Avatar universal
Floridian 7, Your symptoms following treatment sound like me -

Excellent health all adult life, exercised – ran, tennis, walked, light weight lifting and ate right, except for Hep C which was diagnosed in 1994.  No symptoms.  Never had raised liver enzymes, no fibrosis, minor inflammation.  High viral load. I kept refusing treatment because of the possible severity and side effects and my sensitivity to medication.  

Finally decided to do triple treatment, September 2011 – March 2012 age 57  Did treatment six months. (Before treatment my only health issue was plantar fasciitis in left foot.)

After treatment I started experience a lot of joint, bone pain, severe myalgia issues from the back of my neck to the bottom of my feet, GI issues, hair loss, panic attacks, insomnia, by two months after treatment, I had lost 13 pounds and could hardly sweep a floor.  I was tested for inflammation and crp, all blood work was fine.  No one would acknowledge that the treatment had done this.

My vertebrae in my back were slipping around too Floridian! I'm so glad you mentioned that, I never experienced that before.  Finally diagnosed with severe osteoporosis and fibromyalgia.  

After two years of working hard with stretching and doing very light work outs, etc. I am some better, but not what I was before treatment.  I am HCV free, though, so that is some consolation.

I appreciate all the posts because I don't feel so alone.  My gastro PA said "never had this happen with any of my patients."  Sigh.

I do thank God for getting better and pray that we all continue to get better day by day.

Colleen

Helpful - 0
4226456 tn?1354119928
Merrybe you are so right, autoimmune stuff!  Our bodies have autoimmune symptoms due to the severe chemical trauma we experienced during triple therapy. It is a polymyalgia, inflammation, pain and stiffness in joints especially hips. Also a arthropathy (unspecified injury to our joints causing inflammation).  
I am one year three months post treatment.  I see improvements each month.  My WBC & Iron levels are good.
My spine does not slip around much (weird how one vertibrae or another could slip out from baskic movement or turning over in bed), nor do my fingers joints slip in and out anymore.  My body joints felt like bag of bones that can fall disconnected in a clump onto the floor too.  Sometimes still but not everyday, the joints in my feet feel pain, and loose bones feel like they can disconnect but are now falling into place upon reaching the floor each morning with some short lived soreness.  My hips still hurt everyday. Stretching them does wonders to ease that. I still have much discomfort, throbbing and pain after sitting or after walking to much.  I do yoga/stretching: that helps so much!  Walking and swimming does to.  Even though pain and discomfort is here, the severity/degree is waning. I hold hope that someday it will disappear completely.  As my fingers joints healed my strength returns.  Hepcatlover I know exactly how you feel.  I don't like to be a whiner either, suffering in silence is hard.  
Keep the fight.  Keep the positive attitude.  Keep Moving.  It takes time to heal from a cellular level as our bodies were traumatized to the cellular level. Our bodies need to re-build nuclei on up.  I believe time will bring comfort and healing.  I won't stop believing because the alternative is to be miserable.  Eat healthy, exercise, strenght train.
I am also SVR.  For me it was worth it.  I Will be thinking of you both and everyone who suffers from non-acknowledged physical symptoms that are indeed real.  Hugs to all!!  With Healing thoughts shared & sent!
Helpful - 0
233616 tn?1312787196
have them check your white count and iron panel, full panel

you white cells now have no virus to fight, and if your Wc is high (enlarge spleen? maybe)  you will start to have autoimmune stuff...

iron overload also causes stiff joints, common with liver damage.

mb
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Avatar universal

     Hips, Ow!  My hips!
     Had Pegasus and Ribavarin treatment for 4 months that didn't work.  My hips hurt after that, but it healed after about a year.
     Finished  11 months of triple therapy in July 2012 and was cured!  Hooray!However I still have immense pain.  In that time I have discovered that once I'm moving I'm ok.  It's getting moving from a sedentary position that can be excruciating.  I try to sit on kitchen chairs when I have to get up and down.  It's easier to push off the table to get up and move.
      If I stand or walk for any length of time my spine, lower back, legs and hips feel as if I'm going to collapse into myself.  If I can sit for a while it's ok again.  
     I love walking with long strides.  That is sure to punish me now.  Invariably the next day my hips are throbbing.
     There was a time that I would have attributable this to age, (60), but since the same thing happened right after the first treatment and I saw it happening again with the second I know that it's not my age.
     My doctors at University Hospital claim that they've never heard of this and don't see how it would connect, but going on-line and seeing all of you have the very same issues and my seeing it comes on as I was further into therapy shows me the theraphy is the cause.
     I keep hoping that it will stop like it did after the first treatment (after a year), but it's been nearly two years...  I'm still hoping..
     The key is to get moving, but not too much.  Getting out of bed, going up stairs or even into the truck can make me want to cry.  Once I am moving I feel good, unless it's too mch.  Sigh... This is not easy.  
     I have started my vitamins again and Glucosamine joint juice.  It may be actually helping or a placebo, but it does seem to help...
     Once it's a little warmer I'll use the hot tub too - that's wonderful, floating pain free.  No pressure on my hips..  However getting in the tub hurts and even getting dressed does..
     I try to hide this from others.  Hate to be thought of as 'that person' who is showing off her pain..  - which can make it worse, since people ask me to do little tasks for them, ie: run upstairs and grab this or that, etc.. OW!
     If I say anything it's, "Oh my bones have locked again."  I won't say, " Damn - This hurts like Hell and I want to Scream!!!", (like I'd like too:)
     That's it.  Guess I just needed to vent.  Keep moving guys, and let me know if anything new comes up to help - thanks and Good luck!
    
Helpful - 0
4226456 tn?1354119928
I am so glad you are feeling better!  You are an example of what I was saying above and our light at the other side of the tunnel!  21 months and improvements are still coming.  

I wanted to be back to "Normal" with in 6 months after my therapy ended.  That was an unattainable goal.  I talked to someone who didn't add aerobics until a year after ending triple therapy.  Then he was going very slow, only once a week at first and not doing the whole hour.  

Recovery is individualized.  Some experienced worse side effects then others.  Some will recover sooner then others. But, There is so much hope for everyone if we give our bodies the time we need to heal.  

Patience is what I have told myself when I get tired of being tired & weak.  And I keep going working slowly and softly on getting my strength back.
  
I went to eat the other day.  Crab legs.  Never needed utensils, just my hands and I could whip through a few pounds in nothing flat.  This time to my surprise I didn't have the strength in my hands to bend & crack the shells.  Initially I was overcome with sadness. Then gave myself a break, at 10 months post triple therapy, I am recovering.  Now I take a tennis ball on my walks and I pass it back and forth between my hands squeezing tightly, knowing I am strengthening my muscles again and I will soon whip those shells off that crab meat, no problem!

I wish our loved ones could understand just because we look better on the outside, it doesn't mean we are back 100% on the inside.  I think that is one of the hardest parts of recovery for me.  
I don't talk about it very much with my loved ones because I am busy living life, I know they don't want to hear it and I am doing the best I can, but sometimes I have to remind them.  
Like when you are 10 months post triple therapy and 3 grandchildren come for 8 days all under age of 6 and you need to rest a few days when they leave, LOL!

I hope all get out and walk everyday just a little. Nature, fresh air, birds singing, muscles working helps heal our body & mind and refreshens our souls.  Find a routine that works for you.  Add light exercise, strength training a little at a time.  Don't push hard, listen to your bodies. If you are sore, exhausted.  Maybe it is too soon.  Rest when you need it but do walk everyday.  Drink lots of water and eat healthy.  
Recovery that's my goal, one month at a time :)

Hugs!
Helpful - 0
317787 tn?1473358451
This is such a good thread.  Thank you all so very much

Since I wrote,back in September I have improved dramatically. I am wondering if my frozen shoulder was a blessing in disguise. It got me up early in the morning for physical therapy twice a week plus doing daily PT at home. . I feel so much better now that I am active again.  I am out every day now doing something.  The last 6 or 7 weeks have been a huge change for me.

It takes time to recover.  It has been 21 months since I finished the triple.  I am feeling better every day now.  It did take a while but the alternative was not pretty :)

I still have an occasional brain twinge :) but I am improving, going forward and it is working.

I wish I had listened to Orphaned Hawk when I finished tx, when she said to do some yoga, gentle stretches, walking just a bit.
I finally understood, I could feel bad sitting around or I could feel bad walking.

My first walk was amazing, I used muscles I had forgotten I had.:)

Thank you again everyone :)
Helpful - 0
5249831 tn?1407713726
Thanks to following this entire thread I will be patient in my recovery.

The only thing that worries me is getting back my strength.
Enough to walk around the block and up the stairs. That's all I want!  

I have noted the uric acid and agree with floridian7's comments about seeing any more doctors for a while. Just forgetting the 8am/pm drug schedule will be good!  

If things don't improve, what do you think about seeing a rheumatologist?
Helpful - 0
4226456 tn?1354119928
I don't think you are stubborn at all.  The treatment produces such a beating to every cell in our bodies that we have to allow our bodies time to heal from the cellular level up.  It takes over a year and sometimes longer to restore the damage from the treatment we used to cure hepatitis c .  I found the muscle and joints get worse after stopping therapy as the accumulation of medications continue to work or exist in our bodies for 6 months post stopping therapy.  That takes it's toll on our bodies. We have to nurture our bodies back to health.  Some one who breaks a bone can take months to heal, we injured every cell in our body.  That takes time to recover.   I don't want to see anyone about these side effects for  similiar reasons as you Brandi:   #1 treatment side effect so sever they can cause psuedo symptoms of diseases.      #2  I don't know how much recovery is possible until I give my body the time it needs to heal   #3  I don't know how much time it takes to heal and I think a year or year and a half is warranted before I go looking for something else to be wrong.  #4  I had so many doctor appointments and extra specialist to see for so many side effects, I am also tired of paying and extra appointments to go to and don't want to see some one else until I give my body time to heal.  If I am not healing and get worse after suffecient efforts I will definately go see someoen.    
The journey is different and the same for each of us.  Hang in there, think positive and take good care of you everyone!  Hugs to all!!!
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Avatar universal
No I haven't seen another Dr for the pain yet. I've been kind of resistant to going somewhere new and being told I have some other problem after everything I've been through with the Hep C and treatment. But I'm so glad u got answers and a medication that's helping. If my pain continues despite my current efforts then I will look into it. Thank you for the advice. I'm just being stubborn.
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Avatar universal
Thank you for the site. I will definitely check it out. And I think uR right about the yoga and excersize . . . I am 10 months post treatment and I am able to work out a few days a week now and it is finally helping me start to rebuild muscle. It has been a long recovery road getting to this point though. To everyone who reads this thread be gentle with yourselves, recovery takes time. For me it feels like it's taking forever sometimes but I am so grateful treatment worked. Floridian you are right also about watching the diet in my experience cutting out sugar, breads, and dairy has made a huge difference in the inflammation for me and maybe the food triggers are diff for everyone. Idk. . . . But I'm so grateful for all of you on this site!!! This experience is one that no1 can really understand unless you've been through it.

Also, the Dr's at the research clinic say they are hearing really positive feedback from patients who are using Beneflex. I got some and I'll keep you posted.

Big hugs to all of you. You are in my prayers!
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4226456 tn?1354119928
The site I listed was only for the physical description of inflamation not to plug the supplements.  I don't take them..  It is very informational about natural herbs and how they act in our bodies to fight inflammation.  As an example only.  But we know that all herbs must be taken with caution as they are not regulated..

This is Dr. Weil's anti inflammatory food pyramid.  
http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html

And I think we need to do yoga, exercise, gentle weights to strengthen our bodies.
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4226456 tn?1354119928
Thanks Brandi for the information.  I did not experience high Uric acid, but that is a inflamation contributor for some.  Your info is right, I think the triple therapy meds cause an ongoing responce of inflamation in our bodies.  We should take anti-inflammatory medications and herbs as well as eat anti inflammatory foods.  Staying away from sugars and other things we injest that causes inflamation.  Even though the doctors do not recognize the long term Inflamation caused by the meds we took can be the culprit that destroys good cells, joint linnings, arteries, organs and other body parts: causing damage that last years: Joint aches, muscle tenderness....We can help ourselves.  Here is a site that talks about that.

http://www.inspirednutrition.com/3/Chronic_Inflammation_Relief_-_Supplement.html
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Avatar universal
Ok I have a friend on a new experimental triple therapy study at a local vet hospital. He asked the dr'a there about the joint pain issues and they say it is a very common side effect. It's usually caused by a built up of uric acid that build in the joints if untreated and causes problems. They suggested a combo of allopurinol for uric acid and an anti-inflammatory. Unfortunately my doc wouldn't prescribe it for me at my last appt so my friend on the study splits his dose with me. I have tried it 2-3 times now when the pain and inflammation was so bad I could barely walk up stairs. It worked so well for me! It takes about a week but the pain is so much better when I've tried these 2 meds together. His dr's also said that dr's should be testing for this the entire time uR on treatment so that if uric acid levels elivate they can be treated immediately to avoid long term problems. As far as I know I was never tested for this while on treatment.

Some of the other symptoms I've experienced post treatment, are severe stomach pain, bloating, inflammation, a newly squired allergy to milk that causes cystic acne for me, continued hair loss, skin problems on my face, neck, shoulders, and back, and weight gain. Just to name a few.

Luckily it wasn't all for nothing though. You are all in my prayers and I hope u each achieve SVR and have the easiest time on treatment that u possibly can!
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Avatar universal
OMG I just wrote the longest response and it wouldn't send! Ahhhhh sigh! ;)
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Avatar universal
Well, back from the docs. Yes, the rheumatologist did run all the tests for autoimmune disorders and nothing came up positive. We've done the thyroid and everything else they can think of. I do find it interesting that I have the elevated marker for inflammation (ANA?), but they can't figure out what is inflammed. So, a lot of it will just be called fibromyalgia, but we're also going to look further into kidney stuff. I have an odd history of kidney stones so we'll see what turns up.
Best wishes for better health to all who are still having issues.
Hang in there. :)
Helpful - 0
4226456 tn?1354119928
I am glad pooh you found something that is working.  Your suggestion of a rheumatologist is excellant!  These are deffinately disorders that need to be identified or ruled out if post symptoms persist of this nature.
I was tested for  autoimmine disorders and a couple other diseases, none were positive.  I believe the medications brought my symptoms on or were a precurser to what ever it is I am experiencing.  I am hopeful they will go away in time.
Hope you & all continue to feel better.
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1815939 tn?1377991799
I am sorry that you are having these problems.

Most regular doctors really have no clue when it comes to Hepatitis C, extrahepatic manifestations of Hepatitis C, or post treatment issues related to treatment for Hepatitis C.

Both Hepatitis C and Interferon can trigger autoimmune disorders. Joint pains are frequently symptoms of autoimmune disorders. Have you seen a good Rheumatologist at a large medical facility, such as a university medical center? A competent Rheumatologist should thoroughly examine you and test you for all autoimmune disorders as well as other rheumatological disorders. Perhaps the Rheumatologist would also refer you to other appropriate specialists.

I recently saw a Rheumatologist who examined me and tested me for multiple autoimmune disorders. I was diagnosed with Sjogren's Disease, which I actually had before Hep C treatment but did not know it. I am now on Plaquenil and am already seeing an improvement in my symptoms.
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4226456 tn?1354119928
Brandi I don't know what the damage or condition is for our post joint & muscle condition.  I hope you have improvement and please know that it  happens over time.  I am almost 9 months post treatment and some days are better then others.  I feel my feet painfully collapse like melting putty when I get out of bed and walk first thing in the morning, my spine and shoulders still crunch & grind with any kind of movement but worst in am.  My hands and feet don't swell but fingers still do.  My knees hurt occasionally.  Hip stiffness after sitting for any amount of time.  I found yoga first thing out of bed in the am is helping.  I take magnesium and I walk every day.  I know no one in the medical community is acknowledging this post side effect.  I don't know why.  I can only say, I am hep c negative at this point thanks to the therapy. I would do it all over again to have my life back.  Now my life is not as it was but I am positive and each day post treatment I am blessed.  We have to give ourselves the best nutrition, exercise, positive attitude, a strong belief in our bodies that we will heal. Remember we had therapy that was the worst of the worst in chemo and it took a huge toll on us, it had to too kill the virus.  Our bodies need a lot of time to heal.  6 months to get the chemo out after therapy and at least a year to heal, for a lot of us longer.  I refuse to believe I will not be physically back to what I was.....  Stay strong!  Sending healthful wishes to all!
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707563 tn?1626361905
Hi everyone -

We moved this to the Post Treatment Issues because Floridian7 has been off treatment for 6 months+. Others that have added their comments haven't yet been off that long, and we'd suggest posting in the Hep C Community, as it could still be from the meds that have yet to entirely clear from your body.

Thanks!

Emily
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Avatar universal
I have severe joint pain that came on aproximately 3 months post triple therapy. I am only 37 years old but I feel like I am 90. I was active and sporty b4 treatment but I can not even run now. My knees are the most affected and it is very painful. :( my doctors also act as if they never see this side effect but without a doubt treatment caused it 100%!!!!!! I am stiff all over now like an old person :( bums me out.
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317787 tn?1473358451
Thank you so much for all of these articles! I really appreciate, I have been looking for some relation ship between the pain and HCVdamage, liver damage and then interferon.
I am having some bad tendon problems, muscle problems.
I just bought some magnesium oil in the hope that will help, I am also on my way to the doctor now.
Thanks again
Dee
Great thread, thank you all for your input
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