post solvaldi tx , have major joint pain and swellinh

[timmacc]

Hi folk < just finish dual treatment of Solvadi and Ribavirin , happy to say so far. I am non detectable .
3 month after  .However  I HAVE MIGRATING Joint Pain . Gos from left hand and wrist , clears up and then flares up in my right hand and wrist or even elbow .. the pain is about the worse I have had ever , hand is immobile , any movement is impossible, have seen my pcp 3-4 times .. he didn't  know , went to local rheumatologist , he had some ideas ,and suggested I go to my liver people and have then refer to to one of their own .. Liver dr says its way to early to say if the migrating join pain has anything to do with the Solvadi . My Hepatologist  says that since hepc was undetectable for about 6 mo. that the joint pain can not be related the hep-c ..
Has any one heard anything about this .. Thanks  Wmann

[ChristineSF]

Hello, thank you for posting your symptoms. I have all of the same issues and also constant nausea. I feel tired all the time, have shortness of breath. I have been off Sovaldi and Ribaviron for two months now. This is my second course of therapy for Geno 3. I had to stop the interferon 3 months into it as my immune system was failing and below recommended treatment at critical levels. I wish I could find other resources to help with understanding if this is normal. I too, would have thought the side effects would be less by now. Feel free to write back. Thank you so much,
Christine

[hoping4cure]

I came upon Daniel Amen's recommendations for total health and found his research pretty interesting. At 6:25 on the video he goes into greater detail. Pretty good stuff.

http://youtu.be/MLKj1puoWCg

[Dee1956]

Hi Jeff, do you know how your liver is?  If you have little to no damage I would wait.  If you have damage I would seriously look into the new treatments available.
If I had not been going into cirrhosis I would have waited.
I could not afford to wait so I did the Incivek, Riba Peg
I have been cured for 2 years.  While it was the hardest thing I have evern done, now that I am on the other side I would do it again in a heart beat
Best of luck to you
Dee

[Sarah1949]

Jeff, I am presently treating with sovaldi and olysio. This is my first treatment. If I did not have cirrhosis, I would not be taking these drugs. Because they are so new I think it wise to wait and see if there will be any major after-effects. No one knows at this point.

[dgr56]

I was on the inciv/ rib/interf . Treatment made it a whole 3 weeks went from no acites to moderate  acites  and the e.r. with 3 + pitting edema was sure I was dying. .just finished 6 of 12 week solv/olysio treatment and now viral free   side effects were insomnia rash with itching both tolerable on and overweight gain then loss . The worst was the sun 5 min. And I was burned to a crisp but nothing near as bad as the other drugs . But everyone is different I am type 1for 30 ty years just hope damage can be reversed some was going into stage 3

[otterwatcher]

yes ribavirin is known to affect the mitochondria,your energy cells.The fatigue is the worst symptom for me.

[hoping4cure]

Since finishing the S/O treatment the only relief seems to be staying on a real strict diet. I just bought the anti-inflammatory diet and recipe book. Lots of fatigue, joint and muscle pain that is much worse after treatment. Looks like the treatment causes your immune system to ramp up and may not return to normal post treatment. I've also developed several bad floaters in my right eye that luckily are to the side plus dental issues post treatment. Even though the treatment has less side while on treatment the post treatment side effects might be just as bad as the old treatment for some.

[Ekkiemom]

Hi Jeff...I understand your concern about treating and the the side effects. In my case I am I relatively good health at 59 with the exception of this pesky virus which I have had 30+ yrs. I guess I just want to throw my two cents in.  As the virus has progressed I have become more tired, depressed to the point of isolating myself.  You or I should say "we" are really lucky to be able to have the newest drugs available to us right now with much shorter treatment times and far more manageable sx than just a year and a half ago. Your Hepa will tell you that the advances have been amazing!  Of course it's ultimately your choice to treat......give yourself the chance to live a hep c free life. This is a great community with so many people who will walk with you thru your journey...EVEN ME!  :)
Bless you & Keep the Faith
Peace
Deb

[Jeff1652]

I am 62 years old and I am thinking about starting treatment w/sofosbuvir and ribavirin. I am not having any bad issues with hep c. I have been drug and alcohol free for over 8 years.  I am concerned with the side effects of this treatment.  I would like to hear what others think. At my age is it worth chancing?

[scottie24]

I don't believe how long or how short the drugs stay in one's body is of much consequence.  

What is important is whether or not they irreversibly (or near irreversibly) whack the immune system while they were in.

[Dee1956]

Hi I wanted to come back to say that the Ribavirin takes up to 6 months to leave your body.  I understand the feeling.  I had hoped I would feel better after Incivek, Peg, Riba.  It took time.
It does improve.  Water helps. Walking or another from of exercise helps.
I am not a doctor just a member.  I had some problems after tx with muscle aches and twitching.  I found that Calcium and magnesium helped me with both of those problems, and lots of water :)
My hair fell out for 3 months after finishing tx, now my hair is back  better than ever.  I had dry eyes and used drops for a long while, better now.  I had the slow thinking and a hard time getting my words out, that is much improved.

Take Care
Dee

[MMI333]

Congrats on your 3 month svr status.  I completed my first hcv treatment w solvaldi and ribavirin for 24 about 2 months ago.  

I am grateful that I will most likely be cured of hcv and can't wait to live my life free of hcv however I have had a tough time w treatment and post treatment sx.  

The fatigue is the most debilitating symptom.  I listed my symptoms below to compare w for others who may be experiencing similar effects during and/or post tx.  It is not to discourage anyone from treatment, as I understand many have not had the amount or longevity of  sx I experienced however it is frustrating to not know if I'm along or if there are others with similar experience.  I am a strong, outgoing and positive person and have become very isolated feeling this way most of the time.

I have had a few days of decent relief of symptoms w improved clarity and fatigue however the new symptoms like eye jumping and  body twitching continue.  Unfortunately, the good days don't last and always revert back but seem to slowly be getting a bit more consistent but I can't say at this point because it is so inconsistent still.  It's very upsetting that no one can tell me if they are short term, temporary or longer term.  

Many people who've posted similar long term sx  also taken interferon but I am certain the ribavirin and solvaldi caused escalated and new issues.  I would have waited for new treatments if I was forewarned of these effects

I'm a sole provider and would not have taken the chance of being disabled this long.  I'm optimistic and stay focused on this shall pass but would like to have some answers.  

Here's the effects I've been experiencing:

-Immune System wacky after treatment- getting off and on flu like symptoms, sore throat, chills, headaches, nausea, achey.  it's getting better but has taken almost 2 months to ease up.  i still do get bouts of this intermittently at night but seems to be almost gone.  time will tell.

- Short term memory, memory loss and delay issues – did have mild memory issues prior to treatment but went into overdrive during and post treatment.  
    
- lack of focus/concentration along w multi-tasking- mild prior to treatment but also extremely intensified during and after tx.

- slow thinking and issues finding words-

-my personality/zest seem to be missing- started towards the later part and after treatment could be due to extreme fatigue but not sure.  doctor feels I medications caused some depression though I don't feel that's it.  I did agree to an anti depressant to see but it has not helped as far as I can tell.

-uncontrollable mood swings and irritable- during and after treatment still exists

- insomnia- started during treatment but it is getting much better

-vision jumping when focusing down or in on things- new and as a result of this treatment

- body/muscle twitching  Did not exist prior treatment and still exists.  It's very noticeable

- hair loss and very brittle- this started towards the end and even post treatment.  It seems to be getting better but still happening a bit

Thanks for letting me share my experience and welcome other feedback.

[Livelife777]

Hep C can cause autoimmune issues.  I also believe that the jury is not out yet on the future side effects caused by the current Txs for Hep C.  I have the same joint problems as you but had them also prior to Tx.  I do believe that interferon if taken long enough could cause these joint issues as well.  Personally I will take the joint aches rather then living with the Hep C virus anyday.
Just because the Hep C is gone, the lasting effects of the virus will likely continue.  As stated, the verdict is still out on this one.
Hope you get some relief soon.
Take care
...Kim
BTW.   I also took the Riba and Sovaldi for 12 weeks.    Sooooo glad that's over!

[Dee1956]

DUH!  Here it is

http://www.medhelp.org/posts/Hepatitis-C/Life-after-olysio-and-sovaldi-treatment/show/2241951

[Dee1956]

Hi I have not treated with Sovaldi, I found a thread of others talking about their post tx experiences.  I thought it might help you.  Evidently people are finding out that there are post tx sx which no one knew about.
I hope this can help you or perhaps you could PM one of the people
Take Care
Dee