Post tx side effects........

[jt57]

I am 9 months, post tx ( my second time, both 48 wk tx), and fortunately I am SVR!  But, I now have the worst joint aches.  Getting out of bed in the mornings is so painful sometimes, that I just can't!  I get in a hot tub every morning just to sort of get my legs and back to a place where the pain is bearable.  I feel I have a hormone inbalance as well.  During tx, I was put on thyroid meds due to my thyroid numbers being out of wack.  They are still not right and I'm wondering if all my aches and pains are due to that.  Went to my Dr. on Friday, he stated that "possible I just needed to give my body some time.  After 2 years of interferon and ribavirin, I needed to be patient".  But this just doesnt seem normal.  I did not feel this way before treatment.  But he did run tests on my Thyroid and Pituitary gland.  Anyway,  I'm so ready to get on with life, but feel like a very old woman.  I am only 54.  This should not be happening yet.  My arms, legs, shoulders, back.  You name it.  Has anyone else had this type of experience after tx?

Jean

[Isobella]

First of all...CONGRATS on your SVR!!!!!!  You were one of my first friends here and as we all can relate, that means so much.

But, I'm so sorry to hear of your ongoing problems. I had a problem post tx (12 triple/48 total) because of what I call the "hazards of immobility".  Even though I tried to walk, stretch, ect  on tx, afterwards it felt like every tendon and muscle in my legs was about an inch too short.  I went to a massage therapist once/twice a week for about 7 weeks afterwards before I felt better. I would suggest the same, but it if I am reading your post correctly, you just had some surgeries?  If so, now might not be the time-at least until your surgeon clears you...but it could be something that helps when the time is right.  

If you had more "down" time from your surgery, it could have exacerbated the underlying problem from your two tx's.  It really is hard on our bodies (especially after a "certain" age) to be down.  Paen said it well above. Don't try to go too fast or do too much, but do try to do a little more each day.  

Of course, your thyroid levels will play a factor in how you are feeling...but the bottom line is, once you are cleared from your surgeon, increasing your activity level gently may help you.  

Wishing you the best,
Isobella

[jt57]

I'm sorry you had such problems, but I am so happy to hear it!  I have pretty much resigned myself to think that this was it for me.  The way the rest of my life would be.  And it is sooo unbearable.  I like you, felt better immediatley after stoppy tx meds.  until about 5 or 6 months later.  I was feeling so bad that my dr did xrays of my neck and arms.  Result was I had to have two discs removed, bone spurs removed.  It has been 3 weeks, and I feel much worse, not better!  But its all over.  Not just in the neck/shoulder area.  I told my family I felt like a hypochondriac (sp?)    I pray this pituitary/thyroid thing is it and we just need to get it under control.  Thanks!

[ziffy1]

hallo jean,sorry to hear that you are in such pain.I'm not in treatment, yet but I've been to see the nurse to talk abaut the terapy.She tell me about  the "classic" side effect and then she say that rarely time the interferon attac even the thyroid glande,and that can cause or ipper activity or,contrary tiredness.she, also,say that this problem at the thyroid could be permanent.Sorry if I tell you that but for the little that i know they could control the side effect (even this one)with the blood test during the treatment..I really hope you feel time to time better.Are you tryed to take some pills for the pain?maybe that  could give you some relief.Let me know and take care ...ziffy1

[paen53]

I had similar problems post tx (72 weeks high dose). I actually felt better a month or two after tx, but rapidly declined in the following months. Getting thyroid levels back in line again REALLY helped. I didn't know there was a joint pain connection early on.

My worst months were actually 6-12 months post, and though I thought I was doing everything "right" in the recovery period, I did have a few moments of thinking this was it for me as far as quality of life was concerned. Then amazingly around June of this year (13 months post) I started rallying and I don't really know why. The only thing I did was to really push myself to ambulate more, walking 1-2 miles per day, every day. And we're not talking power walking here, by any stretch of the imagination.... But too, I think timing was everything - it just took me that long to recover.

I'm now almost 18 months post - 72 weeks, just as long as I tx'd, and have really rebounded. Can now run up and down stairs no problems even. Still some residuals with anxiety and insomnia, but that too is improving.

So, my 2 cents, keep trying to get that thyroid back in order, get your Vit. D checked and up it with supps as needed and keep moving in some way, shape or form. Hopefully you'll move beyond these issues in short order.

Best wishes, Pam

[kcaseytn]

I have only been on triple for three days - however- you accurately describe the symptoms I have experienced for the las 5 months - It is what caused me to find out what was wrong - Hep C - Surprise!!!

Like you say, some mornings I could barely hobble to start a tub of hot water - my hands and toes are so swollen - It is obvisous to people at work that something is wrong with me - a rheumatologist reviewed all my blood work and assured I did not have any joint disease and advised me to start treatment - So here I am - And I hope all this pain will stop after Tx - And I am so worried I will become worse during and after Tx - I can't take much more pain (and I'm pretty tough) - and I have no choice

I wish I had the answer for both of us - Best Wishes

[jt57]

my potassium is normal .  I really feel that it has something to do with my thyroid.  But, lik desrt, I wonder if carrrying this disease for over 30 yrs, the tx, and age ......a cocktail of the above.  I find it hard to believe that there isn't something that would help this, if not get rid of it.  In a way, I hope it is my thyroid and I can deal with it through medication.  If not, I don't know what I will do.  Thanks guys.!

Jean

[JasmineT]

Not a doc or and not an expert but here are some shots in the dark in case they help.   Interferon can cause low or high potassium.  You were on it for 2 years.  I am wondering if you have checked your potassium levels.  I am not a doc but its my understanding that low potassium can cause muscle and joint pains.  

When I was having back issues, unrelated to hep c, the doc had me ice instead of using heat.  I had been using heat and it made it feel temporarily better but it was actually causing swelling and making it worse.  I started using gell freezer ice packs to ice for 20 minutes at a time.  You need to limit to 20 minutes periods and then remove the ice for a while before doing again.  Guess I am wondering if the hot tub is making it worse.  I know I was really unhappy with the idea of ice instead of heat but it worked in this unrelated instance.  Heat does cause swelling so could be something to consider.

[desrt]

Yes, but I've stopped trying to figure out if it's related to IFN tx, carrying the virus for almost 30 years, simple aging, or some combination of the three and simply deal with it. Someday we may get an answer to this (and I'm pretty sure the answer will be slightly different for each of us). Until then we must try to devise individual strategies that work for us.
Take care and if you figure out something that works, let the rest of us know.