Hep C Discussion Forum

RudiRoo · Senior Member

RE: Post TX muscle and joint stiffness

Groupergetter · Guru

Hey Duane, glad to hear from you. smile made my day. The post tx arthritic joint and muscle pains seem to be all to common. I've been dealing with these as well. Since I started tx again it seems to be a bit better. We're praying for you, please keep us in your prayers as well. We miss you. Be well

Matt Chris · Guru

Hey Duane

Its a good to hear your thoughts again on the forum, there are many here that think about you and the courage you show the rest of us. We know that at anytime in the future we could be looking at similar situation ourselves. Its moving for us the hear your reliance of the most high God, he does not always take away our problems away but he certainly can help us cope with the pain and anguish that comes with our maladies. Prayers in the behalf of others has power to help in any situation that we come up against, so we thank you and will say some for you my friend.

matt

Cinnamon Girl · Guru

Hi Duane, it`s so good to hear from you, thanks for letting us know how things are going...and please feel free to post anywhere you like!

I hate to think about you being in such pain and distress and thank goodness for the medications that are helping so much, and for your doctors and medical team who are caring for you. You have amazing strength of spirit and such a kind heart and I wish you the best luck in the world with getting through this one step at a time, one day at a time.

We`re here to give you support or lend an ear any time you feel like posting, you know that.

Take good care. Sending love, Jill

Tig · Admin

Hey D,

So glad you're here my friend! Sounds like you've got a full schedule ahead of you and want you to know that we're all here to help you deal with it. I understand your feelings about all the medication, but I also see you as a tower of strength that can make the decision to end the reliance on them when your health permits it and it will. For now you need to utilize every option available to you to acheive your goals. You have every reason and right to feel as good as you're able, so take advantage of those things that make it possible.

It sounds like your healthcare team is staying on top of things. The testing is a necessary part of life right now, but the attention to detail that you and your team are giving will keep you within reach of your goal and that in my eyes is a blessing. We value your friendship and hope you know that your future health and welfare are important to us. Good luck with your upcoming testing, we'll be saying those prayers for you and everyone dealing with these health issues. That you can be certain of... Hang in there buddy, we love ya.

Tig

Isiscat2011 · Guru

Duane.

So glad to read your kind and heartfelt words. I wish you were not going through this but I know you are so strong and will prevail.

I think of Mike often too and hope he is ok.

Dzdayscomin · Senior Member

Hello all, this is a subject that has become far to familiar with me, i went to the Rheumatologist in Oct. And have a slightly high RA factor and a few other elevated labs out of the 15 they did, but the end results from her were Neuropathy ,myositis, mild RA and all caused by the liver disease..according to her anyway. Either way it has been torturous and I can barely function without taking pain meds and when I take days off to assess my dependancy and my true pain level it is just incredible how much the meds help, but what a shame that my body is in such poor shape that I really really depend on those.

Friday i will do my 3 month MRI to look to see if the other tumor got bigger, and labs, then the 8th its good ole days with the endoscope again, I officially got my exception points so MELD now is 22, I get 3 more points Friday, than 2 more every three months, so......transplant should happen by next Dec.2015 .

The sick part is if I take my meds I really don't feel like i need this transplant....but I'm pretty sure there is no back door, having had and or still have HCC some days Ya just wanna run far far away....and then come back when it's time to take your meds again.

Just want to express my joy and thanks to the Lord for all of you that have gotten your TX, and those that have been successful to live on and help others ...and for those of you that have yet to treat that are special to me, I am really praying that your steady heart and patience will be rewarded very soon.

Also a prayer for Mike too .....I truly hope he is doing ok.

Didn't mean to re steer this away from the topic just id say what i had in one post.

Duane

Tig · Admin

Hi Rudi,

No, there has been no mention of that test. I don't go in for those tests until Dec 4th and will talk with the doc a week later. If I don't start getting some relief from these new meds, I'll be asking for some additional testing. Arthritis is one thing, but I'm experiencing severe large joint pain, as well as the constant reminder of every other joint in my body! Just sitting still I swear I can feel every joint by thinking about it. I don't think that is your standard everyday arthritis. It didn't start until I was well into treatment and has progressively worsened since EOT. Some report improvements after several months but I've found the opposite. I'll just keep dealing with it symptomatically and hope for the best. For now anyway! Thanks for asking, I'll keep that test in mind.

Tig

RudiRoo · Senior Member

Tig56 wrote:
additional blood work. I'm about convinced I've got some sort of RA thing developing, my PCP says she believes more likely severe arthritis secondary to treatment. (More tests)

Just curious if they ordered a C Reactive Protien (CRP)?

Diabetics can get Drupytren's too. Folks with HCV are more suceptible to diabetes. I've been fighting it for years.

OldenSlow · Senior Member

@bodywiser -- Welcome and thanks for posting. Hope you'll keep in touch. As you can see from the other posts, many are trying to figure out whatever causal links there might be between treatment and these various aches and pains, and how best to address them. It's quite the work in progress. I have Dupytren's in both hands, ring fingers. Had a needle aponeurotomy in the right which fixed that one for the time being (could recur), left hand isn't bad enough just yet so i'll wait. It started coming on years ago, long after contracting HCV, but well before I became cirrhotic. They've established a link between Dupytren's and alcoholic liver disease, but not so much with other chronic liver ailments. It pops up a lot with HCV, though.

@Scruffy -- Things are much better when I keep moving, so I try to do just that. Haven't figured out how to keep moving 24/7 yet, but I'm working on it. wink

@David -- The improvement is there, no doubt. It hasn't been as linear as I'd like, but I'll take it. Like you, I'm accustomed to aches and pains and don't feel it's the end of the world just because I hurt. This has been more limiting in terms of lifestyle, though, and I'll be happy when it's gone.

bodywiser · Newbie

I have been following this forum since starting my treatment of Sovaldi/Olysio almost a year ago. Since I was one of the first out of the gate, I
have been reading to see if others behind me have experienced some of the same. I must say it is very interesting to compare notes.and I
now feel it time to share my experiences so far. I am a 57 year old female with no history of prior treatment other than alternative treatments.
I have been able to live a fairly active and healthy lifestyle.have been able to manage gastro problems and joint/muscle aches and pains and fatigue over the years. I am 5'2" and 113 lbs.the first week of treatment I experienced flu-like symptoms and severe headache. I then began to feel
better and improved over the next 2 months with energy .but had some insomnia. The last month then seemed to take a toll on my body and I
experienced a lot of fatigue.needing more than 12 hours of sleep to function. At end of treatment I slowly regained energy but still had to pace myself.
One month following EOT I noticed a lump in palm of hand which turned out to be Dupytren's contracture. (Tendon tissue gone awry) . I also had severe pain in my feet to where I was hobbling when walking. Foot specialist said it was caused by tight tendon and muscles and could resolve by stretches. (which it has!) Pain in hip from an old injury..tendonitis I was told by another doctor.again getting better by massage and stretching. I do still
get fatigued easily and Gastro Doctor didn't seem to connect it to treatmentmy blood tests just came back as anemic. I can't help but think all
these symptoms were part of the treatment side effects. I feel that recovery is a slow process and patience is needed while the body rebuilds. I
understand the anemia but the muscle/tendon problems do puzzle me. Since Dupytrens is thought to be triggered by something.and rheumatologist told me that he has several Hep C patients with itthen perhaps the treatment stirred up the Hep C which in turn stirred up the Dupytrens. It may
or may not be related.but there seems to be a common thread with tendon tightness and HepC and post HepC. I've rambled enough for my first post so I will be interested to hear from others. With that being saidI am looking forward to my one year anniversary of beginning my treatment.(I received my meds on Christmas Eve 2014) and I feel blessed to have beaten the dragon and feel optimistic that I will be free from all residual effects very soon!

hrsetrdr · Guru

I still have the muscle and joint pain & stiffness, this at 27 months post TX . The pain and stiffness has been getting to me lately, perhaps due to the change in weather- actual autumn-like conditions. From my neck down my spine the pain is a sort of burning that no kind of pain med(that I have access to) will remedy.

Otherwise, I feel pretty good, have more energy for physical activities than good sense...

Tig · Admin

I go in the first week of December to take my EOT +52 Viral load test and some additional blood work. I'm curious to see what's been going on over the last 6 months. I'm about convinced I've got some sort of RA thing developing, my PCP says she believes more likely severe arthritis secondary to treatment. (More tests) I dont know what it is but I can tell you that it's continuing to get worse and more painful by the week. Exercising when I'm able does keep me moving with less pain, but I'm limited in what I can do because of the pain. There's no denying it, it hurts like hell and prevents you from doing as much as you want. I'm learning to be happy (satisfied)by doing what I can. They just increased the anti inflammatory meds, continuing pain meds and now trying an SSRI for neuropathic pain and Glucosamine/Chondroitin. Six of one and a half dozen of another.... I assume the VL will confirm the SVR remains viable, right? With any luck...

Tig

Groupergetter · Guru

While I didn't reach SVR with the S/O I'm definitely having more muscle, joint and arthritic symptoms post tx. Particularly in hands, and knees, but also in neck and hips areas. Also perhaps some fibromyalgia. This started about 1-2 months post tx. Granted I don't get much exercise, it's something I really need to work on.

Barnacle · Senior Member

Everyone posting here and on other threads about this all seem to have my symptoms nailed. If I sit for a while or after sleep my muscles and joints are all tightened up. It seems to involve different joints and muscles all over my body so I can't pinpoint any one area.
I had a pretty uneventful Tx and had very minimal Sx. I was anything but inactive and even went on a scuba diving holiday 4 weeks into Tx so I can't blame inactivity.
The problem really only started to show up a month after I had finished Tx and is getting worse by the day. I am waiting to hear back from my GP who took some blood just over a week ago.

Wayne I'm really encouraged to hear your symptoms are subsiding.
I am not one to run to the medicine cabinet every time something hurts a bit but I am hoping for some relief and especially some answers.

-- Edited by Barnacle on Wednesday 12th of November 2014 12:22:43 AM

Greg D · Senior Member

Hello David,

Like Scruffy I also was on old triple tx and in week 32 post treatment. For me it took about a month for the joint pain and stiffness to start. At first I thought it was due to some prior hockey injuries that used to nag me from time to time but now I'm convinced it is not. Stiffness and sensitivity particularly in my elbows and shoulders. When I work with my hands the pain travels up to my elbows. I wonder if it could be a tendon issue as opposed to an arthritic type of pain? Straitening out my arms is especially painful. It's funny but I tend to keep trying to work it out by straightening them, hoping that doing so will be of benefit, hoping they won't seize up. It also has made sleeping a little harder which I do not need. Legs seem to be alright, just upper body for me.

Rob and others are right in suggesting exercise, stretching and fitness. To me it seemed tx literally melted my muscle away. Of course being inactive for 28 weeks- which I have never done before- would probably do that, but it seems like there is more to the muscle loss than just inactivity. After working out one feels the pain of having done so but it would be a 'good' type of pain that would go away over a day or two max. It's almost as though the 'good' type of pain is yet to appear.

I have simply been coping with this in hopes it will fade away without taking anything for it. A nurse did mention that it might be due to toxins I may be ingesting. I am a light smoker.

Thanks for the post David, this topic is one that has been of concern to me as I continually look for loose ends to mend after the old triple tx train wreck. I hope I can eventually share something a little more constructive on this.

Gator Man · Senior Member

Rob and I were on S/O without Riba. I had significant aches and pains while on my abbreviated Inf/Riba course, but don't know how much to attribute to the latter drug. Like Rob, I do have occasional soreness in my legs that goes away with exercise and I suffer from hand cramps after repetitive use.

The rest of us who have posted on this topic have a few years (actually decades) on Rob, so our creakiness and other maladies inherent with advancing age, makes attributing symptoms to Tx a little more complicated. I'm just guessing that Rob is in a little better shape than us geezers. I also physically feel better now that I have rid myself of HCV, so that counterbalances some of the Sx that might remain from Tx.

A good post Tx topic that can expand with the Harvoni crowd in a few months. It will also benefit from having more Inf/Riba free Tx experiences to consider.

P.S. We posted at the same time Gracie, so please don't think I included you in the "geezer" remark.

-- Edited by Gator Man on Tuesday 11th of November 2014 10:44:38 PM

Gracie · Guru

Oh yes, hip pains (never had before or during treatment), and arm and shoulder pains. Most definitely from the treatment. Also have a bad stomach now. Got omeprazole prescription from my doctor and it helps a lot. I KNOW these are from treatment, 12 weeks of triple poison. (Poison being necessary to kill the hep c). It would have been worth it had I cleared the darn thing. I believe the joint pains are from the Inteferon, so shouldn't be as common with the newer treatments..

Scruffy · Guru

I was on the old triple tx. Inactivity does a number on you. I tried to stay active all through my tx. I'm full of arthritis and had a hard time before tx. Its been almost 6 months since I finished tx. When I get up in the AM its like I'm walking on wooden legs but that doesn't last long. Gotta use those joints and muscles. Today I got up walked 2 miles to a place I like to practice Tai Chi. Practiced for about an hour and walked 2 miles home. They can keep the fake knee they wanted to give me. USE EM OR LOSE EM. +1 more for the the keep moving train. If I sit to long my legs go back to pegs.

OldenSlow · Senior Member

I'm with you guys. Symptoms sound very much the same. I've spoken to two HCV docs about it and they claim no knowledge of this using the newer DAA's. I ain't buying it, either. I can't pretend to know which drug did what or to what degree my forced inactivity contributed, but this is more than random coincidence. In fairness, things have improved a bit in recent weeks (I'm 26 wks post), though when I get to thinking I may have turned the corner, it seems to double back and bite me again. I'm mystified.

Let's keep this thread alive on the subject. This has been popping up fairly often in discussion and it would be nice to make some headway in understanding what's going on. Googling just frustrated the hell out of me. There were so many --algia's and --itis's I kept coming across that I gave up.

Thanks for bringing it up, David.

wayne

Fireman Rob · Senior Member

Hi David,

Sorry to hear you're still having a hard time with joint and muscle pain. I find it interesting that so many health care professionals are so quick to dismiss post Tx related challenges. Especially considering how new these meds are.

As you know, I had similar issues with muscle and joint pain myself during Tx. Now I'm 10 weeks post Tx and there are days my legs ache in a bad way! My joints have definitely been affected. I had none of this before the meds and I'm still fairly young.

I definitely notice when I don't work my legs for a few days, they ache all night and it feels like I have restless leg syndrom or something. I found hiking when my legs get sore alleviates most of my pain for a few days. Also, I just remodeled my bathrooms and my hands cramped up when using a hand drill or sanding drywall. Trying to lift weights is more challenging than ever before because I stay sore for days more than ever before.

Hopefully this new condition fades in time as it seems to get a little better the more I push myself physically.

Stay healthy my friend,

-Rob

Barnacle · Senior Member

It's been 5 months since completing S/O/Rib Tx and for the most part I feel great. At least most of the Hep C symptoms have gone away. I started getting joint and muscle stiffness about 1 month after Tx and it hasn't gone away. I mentioned it to hep c clinic nurse and she said it is common with interferon treated people but not with my Tx. She felt it was unrelated.

I'm not convinced as I know many of you have had similar experiences. Can someone direct me to some documentation or studies that deal with this?

Also how are those that are affected dealing with it?

Hep C Discussion Forum

Legal Disclaimer: