Aa
Aa
A
A
A
Close
Avatar universal

Anyone else have joint problems 10 year post Hep C treament?

I was on "experimental" Interferron and riboviron treatment for 2 years in 1999-2001 and now have no cartilage in my shoulders and have chronic joint pain.  I need bilateral shoulder and hip replacements and have acute lower spine pain which causes bilateral sciatica. It seems strange all my joints are breaking down at once.  At 55 years old, my Dr's comment I am young to need joint replacements.  My Doctors don't seem to know what has caused this condition and one said it was probably congenital???  I think it is related to my Hep C treament because that made all my cartilage and skin hurt at the time.  Has anyone else had these symptoms?  FYI no evidence of virus for 10 years now even tho my chemo treatment was called a "failure"
Best Answer
Avatar universal
Coincidentally, I have had the same issues over the past ten years since SVR.  Initially it satrted with severe joint pains after tx, and then the additional problems with shoulder, hip, and knee connective tissue.  My body feels like it has aged forty years in the ten years since SVR.  Several others on the forum have experienced similar joint, and tendon problems..as well as chronic rashes.  I also developed several chronic skin conditions upon finishing tx, as did an old member Jim (jmjm), on the forum.  Don't let people mislead you by saying it is coincidental...these are the exact issues that are common to the group that has developed serious problems after tx.  Many doctors readily acknowledge that interferon can cause these problems, and rheumatologists across the country are seeing many of these patients, who present with the same issues after tx.  Its why the Mayo Clinic terms it 'post-interferon syndrome'.  Of course its not been 'proven' yet as someone mentioned....none of the drug companies out there wants to run studies on post treatment problems.  Its not something the HCV docs seem to want to study either....I often think...well the reasons are pretty obvious.

You will find that in other threads, there was a pretty large scale survey done a few years ago, on post tx experiences.  Interestingly, more SVR's felt worse after tx, than those that felt better.  The symptoms listed that began AFTER tx ended included the problems that you discuss...along with weakness, fatigue, brain fog, and a whole host of CNS related issues.  

Just keep communicating your problems, and keep documenting them with your doctors.  I have had many specialized tests over the years, with a wide range of specialized doctors, trying to figure out what is wrong.  Most of my doctors just plainly admit that the interferon likely 'changed things' for my body and central nervous system.  There are certainly plenty of our cases out there.  Many on the forum don't want to hear about it though, or see the issue discussed.  Your post-tx problems are not important compared to the thought of possibly 'scaring' someone who is considering treatment.  Oh well.....

DoubleDose
66 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I just found this article

http://www.ncbi.nlm.nih.gov/pubmed/19042060

another nutrient that is depleted during Hep C and interferone treatment is zinc.

As well as Vitamin A
http://www.ncbi.nlm.nih.gov/pubmed/7196691

Good luck to everyone! Don't give up, even after 13 years our bodies have the ability to recover if we provide them with the nutrients they need.
Helpful - 0
Avatar universal
It is difficult to get tested on magnesium since the plasma levels are usually very stable.

There was however one value in my case that was always way below the reference range. It was alkaline phosphatase, but since it often happens together with hypothyroidism I thought that it is due to that and to be honest I didn't know that there is a connection between magnesium deficiency and low alkaline phosphatase.

I went back to my blood tests of alpha-Interferone plus Ribavirin therapy and I can literally see how the alkaline phosphatase was decreasing with each month... it still is very low in my case.

Just google "alkaline phosphatase magnesium deficiency"

If you have your blood tests, maybe you got tested on this as well. It could be an hint on the direction to look at.
Helpful - 0
Avatar universal
It is difficult to get tested on magnesium since the plasma levels are usually very stable.

There was however one value in my case that was always way below the reference range. It was alkaline phosphatase, but since it often happens together with hypothyroidism I thought that it is due to that and to be honest I didn't know that there is a connection between magnesium deficiency and low alkaline phosphatase.

I went back to my blood tests of alpha-Interferone plus Ribavirin therapy and I can literally see how the alkaline phosphatase was decreasing with each month... it still is very low in my case.

Just google "alkaline phosphatase magnesium deficiency"

If you have your blood tests, maybe you got tested on this as well. It could be an hint on the direction to look at.
Helpful - 0
Avatar universal
I am not sure if this can help some of you. But recently my doctor suggested that I might have a magnesium problem. I orally tried magnesium and I was surprised how much better I feel.

Since magnesium is depleted by: stress, sickness, too much calcium, caffeine, nicotine, drugs and also RIBAVIRIN (look at overdosage: http://www.drugs.com/ppa/ribavirin.html )

and also since magnesium causes an exhaustive list of symptoms, like

muscle and bone pain, tiredness, exhaustion, depression

just read the abstracts of

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4379450/

and

http://www.ncbi.nlm.nih.gov/pubmed/16542786

it could be that due to the interferone therapy some of us where low in magnesium and for many reasons, maybe by trying to cope with tiredness by drinking more coffee and so on, we never managed to get our magnesium balance back.

Apparently in the US 75% have a daily magnesium intake that is below the recommended amount. Every process in your body depends on magnesium, so a deficiency can also cause serious diseases.

Here you can find a short movie which shows how much magnesium ist in what kind of food so you can get an estimate how much magnesium you took in recent years and if this might be one reason for not recovering after interferone

coldcure.com/gif/foods-containing-400mg-magnesium.wmv

I don't know if I am right, but I think it is worth a try. I hope it will help some of us.
Helpful - 0
Avatar universal
THEY HAVE FOUND A CURE VERY EXPESIVE BUT THE TIME OF THE TREATMENT IS ONLY 3 WKS TO 3 MONTHS IT WORKS GO TO A DOCTOR THAT KNOWS ABOUT HEP CAND BE SURE AND TALK ABOUT LONG TERM EFFECTS IM ALIVE NOW BECAUSE I DID IT 2 YRS FIRST TIME STAYEDNON DETCTED FOR2  WN,MY MEMYEARS 2ND YR THEY SAY VIRAL LOAD WAS ABOUT6THATS CALLED REMISSION, THE LONG TERM EFFECTSYOU WILL NEVER BE THE SAME,MY IQ WENT  DOWN MY MEMORY IS HORRIBLE, MY ENERGY IS WAY LOW,IM ON   MEDS WHICH I SAID ID NEVER  GET  ON, I M STILL ON THEM NOW. CANNOT READ AS WELL,ID COULD GO ON BUT ILL STOP HERE;IM ONBORDERLINE3-4. I DONT FEEL SORRY FOR MYSELF, IM THE ONE THAT MADE THE STUPID CHOICE TO STICK THE NEEDLE IN MY ARM SO I DESERVE WHAT I HAVE AND AM GOING THROUGH. I DO SUGEST BEFORE STARTTING THE NEW TREATMENT TO PRAY THEN GET AS MUCH WEIGHT AS YA CAN START TAKIND VITAMANS,SO ON GOD BLESS YOU AND HE WILL HELP
Helpful - 0
Avatar universal
I received the same treatment in 1999. I had to be taken off after only 5 weeks due to hemoglobin being extremely low. I was so sick I lost 22 lbs in that 5 weeks. I now have extreme joint pain, muscles/tendon cramps in my toes,feet, legs and starting in my arms and hands. Rheumatoid cells show in my blood tests. I have bad acid reflux. I go thru bouts of rashes and the itching drives me crazy. I am always fatigued and My insomnia is really playing a toll on me. I have a very hard time remembering things. My liver is enlarged and so is my spleen. My gall bladder walls is thickening. I blame most of these issues on the treatment. My Dr says that I had a reaction to the Ribo and Interferon.
I have had many tests run over and over. There is nothing showing up to cause these issues other then my Hep C and the long lasting effects of treatment.
kat
Helpful - 0
Avatar universal
I started the tx in early 2000 and continued for 2.5 years. If I had it to do over again I would not have gotten the interferon/ribroflavin tx. My health has steadily deteriorated. My hands are so swollen and have huge knots, as do ny toes. I have flare ups of transient swelling and pain and sometimes I cant walk. I was never warned this was chemotherapy. My hair fell out and I have never regained the strenth I once had. You make your own choices, but dont believ all the crap the doctors who are owned by the pharmacutical companies tell you.  Ask questions, ask questions and then ask some more.  Good Luck
Helpful - 0
Avatar universal
Dee, Be careful with the vitamin NADH.  I was taking NADH (which is vitamin b derived) and/or other vitamin b supplements post tx.  I started getting shooting pains up my neck and over my ear.  I found on livestrong that vitamin b can cause Occipital Neuralgia.  I stopped asking it and the pain stopped.  

Also, I found a drink called Nawgen a while back.  It contains citlicoline which seems to have some studies showing it improves dopamine receptors and alertness.  It also has 1 cup of coffee worth of caffeine.  I try to be careful not to drink more than one a day and not every day.  But it seems to help me on down days.  The berry flavor is good.  Others not so much but haven't tried them all.  I found it at Fresh Market.
Helpful - 0
317787 tn?1473358451
I have read that interferon depletes our Dopamine levels which are our feel good chemical in our body.  It makes sense to me when I read of people who do not enjoy the things that they did before tx.

I have been trying L-tyrosine and it seems to be helping to bring some joy, motivation, energy back in to my life.
I also had read about NADH and enzyme that heals our DNA RNA and used that when I first finished tx 2 years ago.
It helped me and other members here.  There is an NADH website with a lot of really good information.  While they are trying to sell something the information is free and you don't have to purchase from them.
Like Ceanthus recently mentioned I am taking Alpha lipoic acid and that seems to be helping with my energy level as well.

What I don't understand is that while people say that these side effects were known, the doctors act as if they aren't.
It is almost as if people are between a rock and a hard place.

I was not aware of long term side effects after tx.  I knew about the sx to expect on tx though have to say that Incivek added to the Peg and Riba was a real game changer and I was very sick during the tx.

So...again, my confusion.  When people try to get help for their long term sx others say, didn't you read the literature that came with the drugs?  Many people saw that, they just did not realize that after tx they would feel worse than they did before treating.  Most people I see thought they would feel better after tx, not worse than they felt before.

While it doesn't happen to everyone it does happen.  It would be nice for doctors to validate their patients feelings and try to come up with something to help them.  Just trying would go a long way to making patients feel better.

I have read that the tx causes auto immune problems and inflammation in the body is causing problems.

My hope is that someday we will know what could make everyone feel well after tx.

I am very happy that there are new drugs that are shorter duration, easier to take.
Helpful - 0
253566 tn?1219679699
Oh, I love HOT HOT HOT baths too and use Epsom Salts too!

I found a great source for Dead Sea Salt from http://www.chemistrystore.com/Products-Bath_Salts.html - they also have Epsom Salts... I am waiting for a big sale so I can get another huge tub of Dead Sea Salts like last year.

I also love their prices on essential oils.  They have a lot of very interesting stuff! When ordering a lot of items their shipping becomes acceptable.

btw, I really miss the deep, gas heated baths in Japan! Everything is separate from the bathtub except for the shower. You shower off after getting the bath water as hot as you like then take a dip into the bath. The tubs are kind of small but very deep so you sit in them but can get your whole body under water! I use to get the bath water near boiling! if the bath water starts to cool off you can turn up the gas and the water heats up. You don't have to empty some water and put more hot water in like in the USA. In Japan there is actually a gas tank where the water goes thru heating it up as you bathe! Amazing!

You can shower and scrub outside the tub and get in again. Many will then put the shower on as cold as they can stand it - especially in the winter. This keeps you crazy warm forever. You can run around in the snow and still be warm. I really miss my days with that gas powered bath tub in Tokyo!
Helpful - 0
Avatar universal
I could have written that too! I took the old Intron A/Ribavarin tx in 1999, before much was known. I was not really informed of what to expect, and got too toxic to continue the tx. I, too, was dropped like a hot potato. I still suffer the effects, joint pains, headaches, brain fog, dental problems, eye problem, etc. My life is ruined and still have the HCV. I think they have tried Interferon on every disease possible, and maybe it has no real use but sure is a money-maker. I find hot pepper ointment helps the joint pain a lot--it's cumulative. Have to keep using it, and hot baths with Epsom Salts. Some things just don't have a solution. Good luck to you all.
Helpful - 0
747988 tn?1396536878
I could have written those words too. Treated in 2007-feel just like you do.
Helpful - 0
253566 tn?1219679699
Of course I agree with every word you have written.

I just don't know how you are able to put your faith into these medical specialist but then I realize all this has come upon you just two years now. I have fired so many doctors especially specialist as they just can't do anything for me or don't understand the issue. I am so sorry you have gone thru all those surgeries and without much relief.

I don't think I have written this here publicly but I really wonder... why are all these big pharmas running away from interferon? (and Riba)? Do they really have sympathy for us patients suddenly? I DONT THINK SO!

The enormous push to treat everybody no matter the condition of liver or numbers ... just treat treat treat - I do believe that the Sh_t is about to hit the fan one day and it will come out that Big Pharma knew all along about the disastrous life destroying side-effects! I don't think the new meds will be much better either. Some very powerful stuff to "CURE" a virus! Really "cure" a virus! WoW!!!

btw, I hear my story in so much of what you have written. It is really spooky!

Take care and just try to get up with a smile no matter how much energy it takes. It has become a great practice for me. Best of luck, frank
Helpful - 0
Avatar universal
Don't you think it's a coincidence that so many people who have gone through Hep C treatment are having the same issues? You don't see anyone that has untreated Hep C having such similar complaints.

I had been living with Hep C for 33 years, and never had any symptoms, didn't even know I had it until I donated blood back in 1992.... and still didn't get treated until 2004, then again in 2011. Shortly after I finished my second tx I started feeling arthritis-like symptoms in all my joints, my hips were killing me with every step I took. I was diagnosed with fibromyalgia, then I was told I had bursitis, and in 2012 had surgery to remove the right bursa. I was told I had to have the left one removed too, but thank God I didn't, because the  pain has remained the same on the right side. I saw a rheumatologist who prescribed medication that didn't work, so he prescribed Lyrica on my next visit, which to me is like drinking water because I feel no different.

I have lost interest in everything that I used to do, hobbies like sewing, baking, jewelry, taking care of my plants; and even daily chores have become a painstaking task. Then I started feeling pain on wrists, hands and fingers, I saw a hand specialist which injected me steroids to block the pain, but after no positive results, told me I needed to have surgery to release the tendons. I had surgery on my right wrist, and a month later on the left wrist and base of index finger (for trigger finger.) I am still in as much pain as before surgery. Nothing seems to alleviate the constant sharp pain I feel.

Brain fog is another part of it, I forget things so easily, even talking to people I find myself looking for words in my mind, while writing this, I have had to do Google searches because I have forgotten words like "bursitis."  My husband finishes most of my sentences.... I forget movie titles as early as the day after I watched them. Names, places, dates are easily forgotten, leaving me with insecurities and doubts about what the future holds for me....

I feel fatigued immediately after I wake up, I have no desire to do anything, can't go anywhere without feeling exhausted, even going grocery shopping, or to the mall has become such a painful task, let alone to the movies or on a trip.

My life has completely changed, there is now the before and the after tx, I am happy I no longer have Hep C, but living life like this has become pure hell. Watching people older than you enjoying life at its fullest while you are feeling constant pain is very difficult. Depression kicks in almost on a daily basis.

I definitely have to agree with those who say this is a direct result of Hep C treatment. As a matter of fact, when I first started feeling all this pain back in 2012, I posted a question: "Is this Arthritis or is this the post side effects of Hep C treatment."  I was only starting to feel pain then, now two years later, it is a constant agony, a reminder that sometimes we have to give something up in exchange for something else....but when it comes to health... it is a very though thing to do... You are given the promise of starting a new life without Hep C, only to then find yourself saying....."If I had only known.....!!!"
Helpful - 0
317787 tn?1473358451
Hi I am not sure if this would help anyone but this article addresses the HCV being related to Rheumatoid problems.

https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/HCV_and_Rheumatic_Disease/
Helpful - 0
Avatar universal
I am 8 months post tx svr!!! Most of the side effects I felt durning my triple tx have long since went away, but the only one that I am feeling is the joint pain...I might have had little aches and pains here and there but its worse now....but other then that everything is so much better!!!! I was on incevik...peg...ribivirin...a horrible combination but after 4 weeks of treatment I was svr! good luck all with your tx its worth it!
Helpful - 0
Avatar universal
Hey all.

10 years post tx with IFN and Ribavirin. Still clear after all these years! Never wanted to find out if I was SVR until I was forced to. I couldn't believe it. No PCR. I almost cried because all along I thought I wouldn't be lucky long term. I believed I was still positive and it haunted me for all these years.

Treatment *****, and I didn't believe I was worthy of success. If you are eligible, do the treatment, believe in it.

Yeah, there are some aches and pains that I wonder if are related to tx, but I wish for all a successful treatment.
Helpful - 0
3221216 tn?1373640059
I have hep c but I don't partake much in the forum because I have not gone into treatment.   I come here and read and educate myself.  I am thankful everyone talks openly about what they feel and experience.  For me this is a valuable tool for decision making.  
This thread was very good for me to read.   Thank you for sharing.
Helpful - 0
Avatar universal
I just finished treatment thru clinical study with SOC and 7977.  I am about 11 weeks post tx and
I have pain in my spine which started while i was on tx. It went away and now it's back.  I also have  muscle pain and other joint pain.  I never had problems with my back or muscles untill I started hep c tx.
Helpful - 0
Avatar universal
I was on triple therapy until 7 months ago and have had awful pain throughout my body, particularly my knees. In addition, my cholesterol went through the roof and I was put on a statin drug. Apparently it's very common for cholesterol to rise after SVR.

So I ended up in physical tx and it turned out that I had runners knee from being so inactive for so long and then overdoing it when I felt better.  Still hurt everywhere else tho.  Finally went to the dr 4 days ago and she said it was a very common side effect of statin drugs and to stop taking it for 2 weeks. As of today, pain gone!

So I'm not saying that there aren't lingering interferon issues that people have, but that's not ALWAYS it. And even if I had had to live with that pain, I still would never regret doing the treatment.
Helpful - 0
163305 tn?1333668571
If the US government took responsibility for the treatment of hep C it might also have to admit and take responsibility for the thousands of people who contracted the virus while in military boot camps from air-jet gun inoculations.
The costs would be staggering.
Helpful - 0
Avatar universal
I completed an unsuccessful regime, for nearly a year of Ribavirin and Interferon therapy. With regards to post treatment symptoms, I do believe I am suffering from related symptoms similar to others discussed here. I have had chronic neck stiffness and pain. The pain does not feel like it is muscle related as I do not feel fatigue in any of my neck or back muscles. It honestly feels like my spine is stiff and movement of my head aggravates it. Though it is typically in my neck between my shoulders up to the base of my spine, I do occasionally have similar issues in my lower spine. Having experienced muscle fatigue in my lower back while much younger, before therapy, I can honestly say that the symptoms I am having today do not feel related to my muscles, but again as with the upper spine, it feels like the spine itself. While I wouldn't say the pain is totally debilitating, it is difficult to live with and severely restricts my range of movement especially when driving and needing to look laterally. Had my treatment been successful, I would definitely accept these symptoms, however they are real and I do not believe they are a result of anything besides the therapy itself.
As a larger issue, considering the advances being made in Hepatitis C treatment, which was my cause for therapy, the government here in the USA needs to be subsidizing care plans to help confront and eradicate this virus. The expense of tackling this ailment are enormous to those with marginal to no insurance and even with decent pharmacy coverage, the medication can be prohibitively expensive. The US and the CDC should get serious about helping people with this and other related viral problems, especially since much of its spread and proliferation can be attributed to blood supplies and medical procedures, which the CDC and WHO are well aware of, this despite there earliest assertions that IV drug users and sex fiends created this disease and are/were responsible for its existence. Neither of these categories satisfy an answer for myself, as I have fallen into neither category. In truth I most likely received my viral infection from the USAF, though time and circumstance would require lengthy and expensive litigation to prove it so with only a slim chance of proving it. At any rate, the point I am making is that in the case of Hepatitis C (and other viral problems), being my specific situation, the spread of this virus was primarily the result of ignorant medical authorities, who while honestly attempting to do a greater good, allowed this and other viruses to affect millions of lives. Given this as fact, there should be government subsidized programs in place to help affected people get the treatments and therapies they need. I see now that some communities have taken the lead in helping to provide clinics which specialize in the treatment of Hepatitis C, though in my opinion this needs to be happening at a Federal level with a serious investment. I would encourage everyone to write their congressional representatives to inquire about serious government support in combating this and other such ailments. I know  I am not alone in my given instance and others have similar stories. With medications that run near 100k $ and effects that can be seriously debilitating as a result of therapies, the government needs to be involved to carry a serious portion of this financial burden. Too many people who are suffering from such problems are marginally employed and financially restricted. The government is aware of the problem, it is high time it stood up to assume the responsibility to its citizens and take serious measures to battle these diseases.
Helpful - 0
Avatar universal
I spent three years on interferon, reba and combination therapy in 1999-2003, with a 1 year battle with lymphoma in between. I was lucky in that all of the effects eventually went away. Problem was the hep-c didn't, but that is why I am doing triple therapy. What I want to say is that I was told before my radiation treatment for my cancer, that the treatment causes cancer. I did it anyway knowing that it may buy me some time. Every individual is different and will have different responses, side effects and results. I highly recommend a book by a very well respected cancer researcher named David B. Agus, called "The End Of Illness". While he doesn't talk about Hep-C specifically, he talks about how little we know about how the body reacts, to drugs, vitamins, or how the vitamins relate to each other. It is a good read and well worth it. I hope everybody lives the best life that they can and I do know from experience that the placebo effect of a positive attitude is real, good luck...Mark
Helpful - 0
Avatar universal
For what it is worth, I have severe pain at times with my muscles and tendons and the cartilage in my knees is going. I have had HCV for at least a few decades but this joint and muscle pain is relatively new ( a few years) and came with the other symptoms like bleeding, rash and fatigue. It is only now while on the oral meds (study) that i feel the symptoms easing up. I figured that these problems are related to HCV.
I never took interferon, I honestly believe I would not have tolerated it. But of course one can never say for sure.
I don't have much knowledge on this but it may be worthwhile to look up septic arthritis-I read somewhere people with HCV sometimes get a sort of infection that affects the joints. I will look into it more too.
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C: Post Treatment Issues Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
7469840 tn?1409845836
San Diego, CA
475555 tn?1469304339
Woodhaven, NY
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?