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.
hi my hubby just finished triple tx but about 3yrs before he suffered pain in joints tingling in hands and feet pain in wrists just like carpel tunnel which i myself have had 2 ops for. Anyway they ran some tests and it turned out to be peripheral neuropathy. A furtur blood test told us he also had hepc geno type 1a. His liver was in good condition and the hep doc told us that the triple tx can actually cause peripheral but in hubbys case it can stop it from getting any worse and that is why he agreed to go ahead with hep tx since finishing tx the sx of perpheral seems to have lessoned, so it might be worth having a blood test to see if it could be neuropathy. Good luck and please lets us know. Jules
Thank you for the information. If this doesn't get better, I will ask for this test. I think chemo can tear our bodies apart and allow anything to occur new. I am hoping it isn't. My symptoms occured after triple therapy, so I am thinking chemo was a variable that led to or caused these symptoms. My muscle fibers ache sometimes too. Thank you for responding!
I'm so sorry to hear of this new problem for you. My own joint pain came up way before tx and seemed to be autoimmune triggered by the virus. Yours is quite a different story, but it is one that we hear occasionally on this forum. It does seem that a very small number of people have joint problems that are triggered by the interferon use. It is controversial, and many doctors do not "believe in it", but it does come up often enough that it seems to be in the category of uncommon side effects.
As for treatments I would suggest trying to find a good rheumatologist (there aren't that many good ones), and seeing what they can recommend. If it is a couple of joints, then steroid shots might help, but that's not helpful if it is more diffuse or widespread. The autoimmune diseases are notoriously hard to diagnose and the tests for them are not very good. As my internist recently explained to me - there are no straightforward tests to confirm or deny autoimmune disorders. The diagnosis always depends on a complex interpretation of multiple tests and physical exam results. Many cases require a very knowledgeable and perceptive specialist, and frequently different doctors will arrive at different conclusions for the diagnosis. Occasionally the diagnosis is so difficult that it is made after observing responses to different trials of medications. There are a large range of meds available for different autoimmune disorders, and some of them are innocuous enough to try even if you don't know what the problem is. One such drug is "Limbrel", which is technically not a drug at all but a medical food, tested to FDA standards and patented for its anti- inflammatory properties. I find it helpful and have taken it for the last six years, although I wish it was about 8 times more effective. Another fairly mild drug I use is Plaquenil. Anything you take for the joint problems should be approved by your hepatologist first. The primary arsenals of rheumatologists are all in the category of NSAIDs, and people with liver problems have to avoid all of those, so we are immediately frustrating to the rheumatologists, but they do have some other things left to turn to. Good luck!
In my case as far as my hands go I just figure all the over training and not stretching and repetitive motion activities snowballed. If you rule out all other causes and you still have some of these problems then you may have to learn how to manage the symptoms.
I wear something on my hand for sleep support when I go to bed
It protects my hands when I get in certain sleep positions.
Here is a video related to certain sleep positions:
Here are the videos that have been helping me
Ulnar nerve flossing:
I learned so many new stretches and exercises that I now do on a daily basis. This may not be what is wrong with you but the point I am trying to make is there is info out there so you do not have to live with pain and discomfort. I have learned a lot since EOT since I was just having TOO many problems. I figured it is timing and age and all the factors together since I felt like a broken doll.
I hope you find answers and feel better.
Ceanothus great to hear from you again. Your responce was the best (very hard to choose between you and Idyllic) but somehow it automatically came up rivll (sorry rivll) and when I tried to change it to you, it confirmed for rivll.. Your advice is sound.
Idyllic great to hear again from you too. I appreciate the sites to check on and am going to look into a wrist support device. I am awake most nights with the tingling and pain in my hand so the sleep positions will come in handy.
rivll thank you. I am noted for impatience in my recovery. It has only been a little over 3 months and I expect more from my body then I probably should. It is not easy. My husband & friends don't understand I am not back full swing although I finally look healthy on the outside again. My forgetfullness is unbelievable and I can't find words at times. Embarassing to say the least.
I am trying to get back into yoga, exercising and swimming.
Thank you all for your wonderful advice and it is a reminder to me how awesome this site is because of all of you!
Wishing you all good health & healing too.
I too finished triple treatment (with Incivik) early (at 24 weeks instead of 48) due to extreme side effects. I too, finished about mid January. My joint stiffness and pain is almost identical to what you described. It did not start with me until about 2 months ago but it sure is not just old age and I believe it is connected to the Interferon.
I have started doing warm water aerobics 3 times a week and it is helping. It is difficult to pinpoint all the body issues during treatment as I felt like death daily BUT this new condition was not part of my world prior to treatment.
Unfortunately my 12 week post treatment labs show the 24 weeks of hellish treatment did not kill off the virus so I will need to try a new cure when my body gets strong enough again. It will need to me much less side effects for this 60 year old gal to even attempt to go there again.
I started having hip pain at around 9 wks into Tx, although I had shoulder and knee pain prior to treatment.
I am about 9 months post Triple Treat, with 24 funs weeks of Victrelis (and the 4 wk leadin with soc)
My hip joints stiffen up if I sit too long, but especially on cement steps, etc.
I also developed kneee jointpain while Treating, but most of that has gone away. Today it is hurting where my inner thigh connects to the hip joint, but the hip joint also seems to pop out all together, only for a couple excruciating seconds, when I first stand up.
I am double jointed, and also turned 50 yrs, so that may also be a reason for someof these problems, plus I was a life-long skater~
I find gentle exercise the best, and a diet high in healthy oils, such as flax-oil, olive oil, and foods like fish, and veggies
Oh Grammy, I am so sorry the triple therapy didn't cure your virus. I will be tested again at the end of June. Thank you for confirming what I feel. I will keep trying different treatment modalities to feel better and you please let me know how you are doing. I would go through hell again to rid my body of this virus, but I wish some one was up front with all the side effects or is it that they really don't know...
Thank you for your responce. That stiffness is the same for me after sitting or riding in the car for a while. The popping out, I have felt in joints n my finges. I sure hope it doesn't go to my hips. I am hinking positive that all ill go away, better sooner then later :)
"My hep doctor denies any knowledge of such side effects post treatment and tells me this is what happens when we age. "
Well, let's just say I do not agree with that statement, LOL. Personally, I think many of the doctors who treat Hep C have are clueless as to the side effects of the treatment drugs (during treatment and long term after treatment) and I think that doctors say things like that when they have no clue what is going on and don't want to deal with it or try to find out what is wrong. So they tell us we are getting old and that is why we have certain symptoms. While I do think we develop some problems as we age, I do not think all problems which are attributed to age are truly due to age, and I do not think the problems you mentioned are necessarily from age, especially since you did not have them before treatment.
First, I would like to mention, that I feel 1000% better since treatment. I had a lot of extrahepatic manifestation prior to treatment (including pretty severe fatigue and no energy, back pain and spasms, hip and knee pain, other joint pain, creeping glucose levels, astham, allergies, and many others. I also had wrist pain, similar to yours but that is gone now. Since Tx I have zero fatigue, tons of energy, no back pain, decreasing glucose levels, no problem with asthma, allergies better, and a lot less joint pain and aches. However, I do have the same type of stiffness and joint pain/aches that you describe in my hips and knees. Now, I had hip and knee pain/aches/stiffness prior to Tx which I have since attributed to the Hep C. It was better towards the end of Tx and for a few months after I stopped Tx. However, I notice it is worse again now. The thing is, it is only stiff and painful when I first get up out of a chair, and stairs are difficult. After a few steps, there is no pain and no stiffness. In fact, if I stayed on my feet all day, I would not even have it (except for stairs). I can be on my feet all day long or walk for miles and my knees and hips do not hurt and are not stiff at all. So in that respect, this is a bit different than prior to Tx.
I do take supplements, but I have taken them for years. I am thinking about looking into curcumin, but I need to research that more before I do that. I know one forum member does use curcumin with good results. (Which is not to say you or I would have good results, LOL ... just depends on what is going on.)
One thing I am going to do is see a rheumatologist. I have an appt. in July at the University Hospital. My ANA is elevated and so I want to first rule out any autoimmune diseases, especially since they run in my family. I have been tested some and the other tests were negative for specific autoimmune disorders. But I need further testing to be sure. Plus, Tx can temporarily cause a positive ANA as well as temporary autoimmune disorders. These usually disappear after Tx. but not always. Once I am thoroughly examined and tested by the rheumatologist, then I will have a better idea of how to proceed.
I tried glucosamine and chondroitin for years prior to Tx, but I don't think it did anything, LOL. How would I know, though. It may have been worse without the pills.
Anyway, my plan is to see the rheumatologist. If he/she finds something, then I will go from there. If he/she finds nothing, then I will probably try curcumin. Either way, I also plan to continue walking and exercising and doing strengthening exercises. Some yoga moves are also helpful and help strengthen. I hope to steer clear of most of the western medicine type pills. I might look into Limbrel (thanks, Ceanothus).
The thing is, I feel pretty good, much better than before Tx, so I am not complaining. However, if I could get rid of this problem, I would feel even better.
Thank you Pooh for your respomce and suggestions. I believe the doctors do not know what all side effects can be. Really who knows how each individualized body will respond to the system wide poison of the therapy that may save our lives. As with everything in life, treatment too brings good & bad. I am so glad you are feeling better! I hope the rheumatologist finds relief for you. I am keeping my fingers crossed all these wierd symptoms I have now will recede. I am so thankful that there was a treastment and possible cure available. I would do it all again for a chance at a cure.
Hello, everyone above has given great advice.
I wanted to add that you are not alone. I don't know if you have seen it but the riba can stay in your system up to six months. I tried to drink more water to help me as I had read that dehydration can cause aching.
I am so sorry that your doctor tried to tell you that the sx that you did not have before tx are old age. I don't buy that any more than you.
I am now 15 months post Insidious (er Incivek) and still feel I am recovering. Saying that, I was diagnosed with cirrhosis so the sx were worse for me than for someone who had less damage.
I assume, because of that, that my recovery will take a little longer than the average bear :)
I can empathize with the thought process. I got so tired of searching for the right word, sentence or even name of a close friend. It was very frustrating. That has improved a lot.
I wish you the best and please don't ever feel alone, as one of my good friends on here has said, "it is very isolating" others do not understand...we do.
Hang in there, every day will be a tad better than the day before. I had times where I regressed but then rallied forth :)
Just a little update:
Now, when I wrote that post on May 17th my hips and knees were bothering me and had been for a few days or weeks. Well, today they feel pretty good, very little stiffness and aching today. I can get up and down (from a chair) with no problem. Let's hope this continues, LOL.
I do think this is Hep C and/or Tx related. So I am hoping that as I get further out from Tx, I won't have it anymore. However, now I have some swelling in my ankles, feet, and lower legs, especially the left leg. I had this in Oct. and again in Dec. It eventually just disappeared but not before I went to a cardiologist. It is not cardiac related. Again, I think this is somehow Tx related and I am giving it time to just disappear on its own, but will continue with my above mentioned plan.
I agree with Dee, for some of these things I think they will improve in time. At the same time, the doctors need to get more educated and knowledgeable about Hep C, its extrahepatic manifestations, and Hep C treatment and its sequelae.
Thank you for your kind words, support & encouragement. I am going to keep plugging along. Just got my cotton candy/ Chemo straw hair cut into short and loving it. Will post a pic to my profile. I look forward to the months ahead & continued healing. I also wish doctors would listen better and become more educated/knowledgeable about the possible effects of the medicine they prescribe. I did speak to the nurses for peg & incivic & rib and told them of the symptoms I experienced. I was thanked and asked by the incivic nurse to call back in a year and update her on my recovery.
Wishing all a healthy recovery and if not yet, great new meds with a SVR!!
Hey there, thank you for the note. I have been having these upper arm shoulder pain. I have been looking everywhere to see if I can find out what it could be.
I did a search on MH and found that an imbalance in the body can cause problems. Magnesium is a good supplement to take a look at.
I am wishing you the best
Me again, I wanted to say that I have found Idyllics videos very helpful and intend to try to do as she says and treat each symptom as a separate occurrence. Since most hep docs discard us, for tx related problems, after tx I don't have a lot of choice.
I agree with Rivil, my first instinct was to rest when the shoulder pain happened, I now know that I need to move around in order to get the pain out
I wanted to mention that I recently remembered I had a bookd on trigger points, they are muscles that have knotted up and they provide pain and referred pain. The book is really helpful. There is an index where you can look up what your particular pain is and it will tell you where to start looking.
It is by Clair Davies and called The Trigger Point Therapy Work
I have used it for arm pain/ulnar pain, back pain, etc.
I just looked up the pain in my shoulder, upper arm, elbow down to the hand, the first thing that came up was the scalene muscles, they are in the neck. I originally thought a fall caused this pain in the left arm, when it started in the right arm, I started looking.
I hope we can all find something that works for us.
I have been dealing with much the same since finishing tx 9 mos ago. A rheumatologist offered a dx of Polymyalgia Rheumatica (not to be confused with Fibromyalgia). PMR responds to steroids (Prednisone) in as quickly as 24 hours as a diagnostic tool and then long term use. The Mayo Clinic is just one source of info, you may want to take a look: http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441
I have a slightly elevated ana, but arthritis was ruled out and the Prednisone worked like a miracle; however, I won't continue to take it due to its horrible possible side effects. I suggest you avoid inflammatory foods and you may want to search out a Functional Medicine professional if you are not getting any answers from your doctors: http://www.functionalmedicine.org/about/whatisfm/
We've been exposed to a lot and the pros still seem mystified by short/long term side effects of HCV and/or its treatment.
This is a great discussion so I thought I would chime in too. I finished treatment 9 months ago and also experience joint pain, especially in the morning but also after driving in a car. I have not yet been able to get all of my good excercise habits established again and I believe that is a good part of the problem. I think excercise is one of those things you see the benefits you had, after you stop excercising. The anemia really incapacitated me during tx and then came winter and I really got lazy. I am trying to walk at least 3x a week for 2 miles but find myself making any old excuse I can. I never did that before. Anyway, I think stretching excercises are of great benefit for joint pain.
It is good to see all of you here - dee, pooh, idylic, bo girl, rivil, ceanathus and of course, floridan and faith
Yeah, I am still not back in the physical shape I was in, pre-tx. I have this ugly apron of flab, where I put all the Interferon and Procrit.
The exercise does help the joint pain, but walking and especially jogging on the cement, is completely out now, as that makes the joint pain worse,
On the bicycle, I make sure to keep my legs warm, if it is cold when I set out, and warm up in a low gear, for at least 10 minutes, before I start pedaling in a higher gear, which puts more stress on my joints.
I was thinking that when we getout of shape, we atrophy, so on the days where I feel pain-free, and try to pile on the gentle exercise. I also bought one of those exercise balls, which makes stretching easier~
wow!!!! i had to jump on this... i have the same problem. when i get out of bed in the morning i am sooo stiff in the hips and sacrum, i have to hold onto something. i have spasms that make me fall back on the bed. and when i grab my cane and put weight on it, my wrist on 1 hand hurts like hell. and 10 minutes later it subsides. had to share that. barry
Thank you for all of the advise and sharing of your experiences. It amazes me and I am so thankful for this site. I am walking 2 1/2 miles every day. I play petanque twice a week, work in the yard, use my huge yoga ball to stretch, wear a hand splint and proper body positions to sleep.
Hopefully as more months go by I will feel better.
I am noticing tingling sensation on my chin and sometimes on one of my calfs like you feel as something is going numb, but it goes away if I rub it. My memory plays huge games with me and it is so frustrating. I feel like a hypochondriac, but know I am not. Patiently waiting to get back to where I was before.
Wishing all of you the Best of Health. Thank you!
Like you I was very stiff and sore after tx, I felt like I had aged 20 years
I do think that as we get back to our pretx activities it does improve.
I don't feel as stiff as I did.
I am walking again and it has helped me very much both physically and mentally.
I have also read that if we are deficient in magnesium our muscles can not relax and have read that 80% of people in the US are deficient in Vitamin D
I have started taking daily vitamins again, I had stopped on tx as I was afraid of any interaction.
It will improve, it takes time
Hey Bean! Great to see you too my friend