As you know....
I have long been a supporter of threads which deal with this topic.
I suggest you read those threads carefully within the medhelp HCV forums.
Your symptoms sound as though they share commonalities with other with post TX issues.
I know too many people....people whom I have personally met or people whom I have known on forums for years who have developed such symptoms. They are people who were more or less "well" before TX and who developed issues after treating.
I merely note..... that there have been many, many threads in every HCV forum I have been in. I've been online in HCV forums for more than 10 years.
There are at least 2 forums which also have Post TX Sides forums within the Hep C forum.
I think that speaks for itself.
I suggest you visit
HCV wanderers (post TX sides)
(you'll note that they have a post TX side effects forum)
I also suggest you visit HCVsupport
They also have a post TX side effect forum
and I have also used their search engine and find that many of these uncommon side effects that doctors don't seem to be aware of are well known in the treatment experienced forums.
Post Treatment Syndrome - SUPPORT GROUP
"For those who are experiencing post treatment side effects beyond the normal potential of 6-12 months and/or have developed known complications related to treatment medications, HCV Support has created an area for support that is not in the public view.
Enter here to learn more about this area, its membership criteria, and how to request access should you meet these criteria."
If these links do not appear anyone can write me, or I think with the key words provided you can find your way
I am sorry for your issues and hope that these may aid you or at least help establish/provide support for causation.
I think HCV does indeed cause joint and muscle pain. Tendons? Why not!?
Hip pain, stiff and painful bones in feet, shoulders, knees, wrists..and sore muscles, very common.
You might also want to look into your bone density as HCV can have an effect on that as well. I was diagnosed as osteopenic/osteoporotic after a compression fracture of a vertebra in my back from a simple fall. This should not happen to a man in his 50's.
Sorry to hear this Dee, does Hep C cause all this? Who knows as I know several people who goes through this that don't have Hep C. I guess at least it gives us something to blame it on....... Wishing you the best
Ah, Dee, so sorry to hear about this. To answer your question: right before my Tx, I stood up from the computer, and my sternum/clavicle joint just spontaneously popped out, and I could see where it was bulging out painfully.
I went to the Dr, they sent me to Xray, where they took an xray while I was lying on my stomach, and I was just told my spine was out of whack, near my neck. This wasmy right s/c joint, and I had been having pain while I was sleeping on that right shoulder, for a couple years. Two other Heppers I knew had the same pain, and one was 7 yrs younger then I when we spoke, so he was young, only 40 yrs.
I also know Diana66 on here also had a similar injury, prior to her Tx.
During my Tx, my hip started popping out of joint as well, and afterwards,for 8 months post,and then stopped. My S/C joint got a bit better, when I didn't use my right arm, but as soon as I use it, it hurts again. They gave me a referral to an Ortho-surgeon, but I dont want surgery, it is close to my right lung, and what scares me, is the huge bump where the dislocation is, is close to my thyroid and lymph glands.
Thank you for posting this, and let me know what the MRI show. I am going to my yrly physical next week, and will also ask for a MRI to be taken~
My educated guess is that this is from our yrs of having Hep C, not from Cirrhosis, or old age, but perhaps aggravated by Interferon.
I weould wait on exercising, until the pain goes away, and I actually avoid stretching exercises, as both me and my Hubs both seem to pull things out at the drop of a hat. I just stick to the walks and a bike, for blood circulation. Even an exercis bike at home would be better then no exercise, but I just dont exercise my right arm anymore.
Hello, thank you all for your responses. It means a lot that you responded.
I have tried to search for information about the tendon ligament muscle problems before when I had the plantar fascias I read about others with similar problems with tendons.
It may have nothing to do with HCV, I am just looking for something to help me while I wait to see the Orthopedic to see what is going on.
I don't want to start physical therapy if there is a chance it could make the problem worse. I did that once before with a ruptured disc in my back.
It is suspected I have torn the labrum and/or several tears in rotator cuff.
The bicep is also involved. The fall that I believe caused it was not that painful. The arm did not begin to hurt for several days and only when it was in a certain position. This past week it has flared to pain just about all the time. So much for the rest, ice, heat, ultrasound therapy :)
There were many people a few years back that subscribed to vitamin, supplement therapy and I thought maybe they were still around; or maybe even new people that have had problems with the aforementioned. I am SVR and I am grateful, trying to get as well as I can. I cannot find much information about post tx for HCV.
I did find one study below that has a link but really just wanted to hear from my friends on here as to their problems or resolutions. I am thinking of trying Glucosamine0Chondroitan to see if that might help me.
Again, thanks so much for all responses. I am having trouble the past couple of days with even typing due to the shoulder pain.
My best to all of you
I hope you are able to rest, Dee. Come to think of it, I did sustain a fall, a week or two before my clavicle dislocated, but it had been hurting for a couple years. I thought it may havwe been due to the fact that I was double-jointed, when I was younger~
I was doing weel, grinding fesh flax-seeds for awhile, and that may help somewhat. But I have recently slipped into a gloom, mentally, so I stopped Vitamixing. I still do the D3 5000 iu's daily, but after a couple weeks of it, I skip it for a few days, worried a bit about a build up effect, not that there is any scientific fact in that, I just like to do stuff moderately instead of zealously.
I had researched surgery options for my s/c joint dislocation, and had read that if itoccurs spontaneously, then surgery doesn't tend to help it. The Dr in the ER looked at me like I was a nut, when I told him all I did was stand up from the computer, and then it popped out.
I can relate Dee. Ever since treatment I have felt like my joints could pop out of place especially my hips and knees. and back. one or other joint feels like its grinding most of the time. I never had these problems before treatment. I cant stay in one position too long while sleeping either. The pain just seems to grow. I dont know for sure of course, but I feel like mine is a lasting sx of treatment. I had bone pain so bad on treatment that I had to take tramadol. YUK! didnt really help much. It just flares up here and there and moves around. very annoying! Im thinking a bone density test is in the very near future for me also. I have also been taking a joint supplement lately.
Thank you both very much for your kind posts. I did not think the fall was bad enough to tear anything. It didn't start to hurt for a while then last week it got very bad. Bo you made me feel much better about dislocation. I believe it can happen just like you said. Today I was trying to do an exercise for my shoulder and my back went out. Talk about feeling like a broken doll, that is me. I am hoping I can find something to help. As Id always says, treat each event as a seperate problem in order to get the help you need.
Funny thing I am starting to feel pain in my other shoulder, just small twinges and it could be the strain of favoring it. I have never played baseball or basketball or any other sport that would cause an overuse injury :) I will know more after I get the MRI.
I also thought about posting this on the cirrhosis side to see if anyone has experienced something similar.
Im sorry to hear your sealing with the pain. You asked what you can do to help yourself so I will throw out some ideas. I have a torn retinaculum. I know its different than a torn labrum but in my research on non-surgical ways to fix my issue, the problem your dealing with came up. Have you heard of PRP (Platelet Rich Plasma" injections? Its where they take your blood, spin it in a machine and do some other hocus pocus to it, and then inject it into the damaged tissue. Check out the link below.
Besides the PRP injections, they have stem cell injections as well. Thats where they harvest your bodies own stem cells and inject them in the problem area. Below is a link to a women who went that route for the same injury you have. (Torn Labrum)
I saw my orthopedic doc yesterday and we discussed a PRP injection for me. Insurance doesnt cover it so I would have to pay out of pocket. He charges $500 an injection. So, I just wanted to give you some non surgical alternatives that you could consider and research further to see if they might be an option for you.
I wish you the best of luck and hope you feel better.
While I agree these type of tears are really common with sports players they also happen to many as we age from years of lifting kids or doing things that consists of a lot of over the head lifting. A MRI will tell if it is a complete tear or just a partial. I know of a few people that have had the surgery and none of them would want to do it again as rehab is really tough... Also keep in mind these things can heal on their own.
I would have a serious talk with my doctor about having surgery done and also if it is not a complete tear would they can do it the arthroscopic way.
Hey there! I just wanted to thank you so much for your response.
I am trying to see if there is some type of deficiency that could be causing these problems.
I really appreciate your responding. I am feeling like a broken doll at the moment.
Lifting kids! I think I get it, for 8 months I have been helping out with a baby, while doing this I can't count the times I have lifted her up in the air over my head. I keep thinking she is so small, then I am reminded she is 22 lbs. Oh my God! You are just great!
It is the little things in life that do these things, kinda like when I had "golfers elbow" never played the game :)
Not sure if you can tell but I realized this as I was typing to thank you so this was my real response.
Thank you so much!!
Thank you so much for the information, I appreciate very much! :)
I am sorry that you are having these problems. I am hoping that you will find the cause and also find a treatment that works or something that works to try to alleviate the problems.
While I agree that age can definitely contribute to various muscle, tendon, ligament, and joint problems, you seem to be having these problems all over the body, not just in one or two places. That would make me wonder if there is something systemic that is making you prone to these problems or that is causing these problems.
I know you had cryoglobinemia. Did the doctors also individually test you for all autoimmune disorders? I don't mean just an ANA test or a FANA test. Did they actually run specific tests for all of the specific autoimmune disorders? You could be negative on the FANA test (which tests for only a limited number of autoimmune disorders) and yet still be positive on the individual tests for testing for specific autoimmune disorders.
If it was me, I would go to a Rheumatologist, tell them all of your symptoms, tell them your history (cryo, Hep C, and everything else), and ask specifically to test you for all autoimmune disorders (run the individual tests for each autoimmune disorder). Tell them you want to know if Hep C has caused you to have any autoimmune disorders.
If you have a good Rheumatologist, he/she will do this. How do I know? I did just that. Since finishing Tx a year ago I have felt much better than I have felt for 20 years and I now have zero fatigue. I have a lot of energy and stamina and basically am doing very well. However, I do have a few symptoms that I had prior to treatment that never went away with treatment. I went to a Rheumatologist who is affiliated with the university medical center and gave her my history and told her I would like to know if Hep C has left me with any autoimmune disorders. So she ordered a truckload of tests, about 39 of them. Most were negative but two came back positive for an autoimmune disorder. I have had it for years, since long before treatment. I have had the symptoms for years but none of my other doctors ever picked it up or tested me for it. Had the Rheumatologist not tested me for the specific autoimmune diseases, one by one, she would not have picked it up. So it is important that one gets tested for each disease individually.
In addition to the autoimmune disease, I also had Vitamin D deficiency. So I am now on treatment for both the Vitamin D deficiency and the autoimmune disease.
So my suggestion would be to see a Rheumatologist in addition to who ever else you are seeing. If possible, I would see one who is affiliated with a university medical center.
Best of luck. I hope you can get to the bottom of the problem.
Thank you so much for your answer, I really appreciate you taking the time to explain everything. I was wondering about the auto immune.
Before I treated this second time I did test positive for RA but was told it was the HCV. I assumed that the cyro was gone along with the HCV. All the spots are gone or going away which is pretty much a miracle to me. I had been told that they were iron stains left from the blood and were like tattoos.
I have an appt today to hopefully get a referal for MRI. I hope I can get tests done before I lose the use of my arm. I am using a sling right now and it seems to help. I also had the vitamin D deficiency like you. I am now ok with that, just looking for other possible links, thanks so much for telling me about the auto immune problems.
Thanks again, Dee
Dee, I am so sorry you are experiencing these joint problems.
I too have experienced joint pain but sometime after SVR it did improve somewhat.
However as I swim and do yoga, I find that I need to be very careful because it seems like I am "pulling" something every time I turn around.I spend a lot of time applying heat to sore areas.
Everyone has posted good ideas of what may be causing this and I really cannot add to it but I do want to offer you my sincere concern for what you are going through and my best wishes for your recovery from it.
Thank you so very much for your response. I appreciate you taking the time to help me find out more information. I have read many posts from the past so hoped it would be ok to ask here again.
Today I went to the orthopedic doctor he said I have adhesive capsulitis (frozen shoulder) he said the fall could have done it or it could have been coming on any way. Diabetics are 3 times as likely to get this and women are also more likely. I have never felt a pain like this, it feels as if my shoulder is ripping every time I move it. The doctor told me that more pain is in store for me. During physical therapy the objective is to get rid of the scar tissue which has some how formed. I know I did not start this way, it was a pain here and there which I tried to treat for close to 5 months until the pain was with me constantly and I put a sling on. That was the worst thing I could have done.
He actually gave me pain meds to take before and after each session of PT
Again Willy, I thank you so much.
Thank you so very much for your reply. This pain is unbearable. I tried to treat it with heat ice, even a personal ultrasound, the pain just kept getting worse until I felt like a knife was stabbing me or my shoulder was ripping. It is confusing to me how it all happened since the doctor said it can just come on and as it does it creates scar tissue. He is giving me 8 weeks of PT, if it does not work, he will put me to sleep and manually break it up eek!
You can bet I am going to be working very hard on healing this myself :)
He also said the average person waits about 3 months before coming in so at 5 months I wasn't too bad as far as seeking help.
My best to you, Dee
I found a little info, it seems that it starts with pain, you don't move your arm then scar tissue builds up.. more pain, less movement, it is a vicious circle.
Here is something I found about this
Again, thanks for all responses, Willy's references are very interesting I am looking into all that he posted. Dee
I just remembered my first Hep doc freaked out when he saw my pinky was contracted, it happened when I cut a tendon many years ago.
I just remembered that and wondered why he panicked when he saw it.
It seems that there is a connection between fingers contracting and HCV so I am searching, I found this and wanted to come back to share this information
I am hoping it is ok to give this site, I thought it was informative as it shows a connection between joint problems etc and rheumatology.
Hi Dee.. I too am 18 months SVR... We were treating at the same time if you recall.. I have been suffering from joint pain and have developed mild arthritis in my hip and toe of all things.. My doctor told me that hep c can cause arthritis.. I have started taking something that seems to be helping, but I don't know if they will let me post it here.. Last time I gave someone the name of something they deleted my post.. A month ago I could not sleep on my side, but now it doesn't bother me.. Is it what I'm taking? Don't know.. but, I seem to be feeling better overall.. John Stossel (spelling?) from ABC news did a story on the stuff.. perhaps you can google it..
Good info, Dee. The last half year, before I Treated, my fingers were contracting all the time, and I was no longer able to even sign my name, which I need to do all the time, when I am working.
Now that I have reached SVR, no more contracting fingers :) It was so painful when it was happening, and they would freeze into the strangest positions. I would be screaming while my Hubs tried to pull them back into place, by massaging them.
I don't know if protease inhibitors could have anything to do with this frozen shoulder I have been diagnosed with but I found this paragraph while looking for help for this severe pain. I am just putting it out there in the hope it could help someone. I also suggest everyone to look at the sites that Willy gave me. They are very helpful as is Pooh's information. It give me a place to start. I did not fight for my life for 6 years only to end up a cripple. My other shoulder is beginning to catch a bit and I am afraid.
I can't afford the copay for 8 weeks of PT so am going to be getting all exercises I can to do at home, they suggest 2 to 3 times a day.
Frozen shoulder can be primary (or idiopathic) but is often associated with other diseases and conditions. Patients with diabetes mellitus are at greater risk of developing frozen shoulder, with a prevalence of 10 to 20 percent [1,8-10]. The condition has also been associated with thyroid disease [11,12], prolonged immobilization, stroke, autoimmune disease, and in rare instances with Parkinson disease  and ANTIRETROVIRAL therapy (particularly protease inhibitors) for HIV infection [14-16].
Great to see you, I am trying some glucosamine and chondroitan, in the hope it might help.
I am sorry you are having problems. I was starting to get something in my thumb, could not write, right before I got the cortisone shot. The shot is not a cure but will enable me to do the PT exercises. I hope
My best to you
Bo, always great to see you, thanks so much for your support, it means a lot
Hi Dee,It breaks my heart to read how much you suffering . I read your recent post on adhesive capsulitis then went back here to see what is going on with you.I too have lots of problems with joints incl. my shoulders./never ever had this before Tx./The interesting thing with my shoulder is that they caused me most of the pain /shooting down my arms and I had numbness in my fingers/but the pain was intense 'only' for about 1.5months and then eased,however ,I lost full range of motion in left arm .All my other joints still hurts.I went to Rheumatologist ,he performed some autoimune tests and said my ANA were elevated incl. alfa and beta proteins out of range but he said he wants to wait and see and recomended physiotherapy only at this time.I can tolerate this pain now without medicine /I take Glucosamin',chondro and msn suplements/and give it more time but will search for the answers at the same time.
Even if you have your diagnosis of adhesive capsulitis ,I agree with pooh still to get tested for all autoimune disorders eventualy ,to be sure that there is nothings else going on. I am sure I will have to have it done too.
I hope your pain is a bit under control by now Dee .Make sure to take your pills before you do your exercise. .