lost post

[zzzztime]

I found this on an older post of mine. I didn't want it to be missed because it was so far down. I don't know if I can do this but i copied it and moved it up so the question had more exposure

thepChippy
05/12/2006
C32  . Finally have stumbled on to a site where I might get some answers. HCV+, 1b, grade3 stage4, nonresponder after 4 months of interferon, riboviren. This has all been diagnosised, treated and let loose since last June. Been free of treatment for 2 months. Treatment wasn't easy, but continued to work full time 11-7 shift as a nurse. What I am going thru now is horrible, worse than the treatment itself. The severe pain in my bones, muscles and joints (and not arthritis type pain) combined with vertigo, tinnitus all taking turns or gaining up on me at one time is nothing short of torture. (And let's not forget the itchy skin.) Just last week started having numbness in my extremities, some shortness of breath and elevated blood pressure. The MD's blew it off as part of the Hep C. A transplant specialist had also reviewed my case, but I have heard nothing regarding suggestions or recommendation. I get the feeling that I am to sit back and wait 'til I turn yellow, before anything more can be done. (if anything at all) Did the treatment exaserbate the virus &/or damage? I won't believe that this is how I am to feel from now on. I am only 52 with a nine year old daughter still at home. I have to work. I had minimal amount of symptoms prior to a routine checkup that discovered this. Now I am suffering. What else can be done?

[can-do-man]

Thanks for pulling it to the top. That was a long way down there. If you don't mind you might post down there and let them know you brought it up. Take care

[can-do-man]

You or any body have any answers for the post zzzztime brought up?

[Mister beagle bailey]

Sorry about what your going through, someone else in the last few weeks also had a bad reaction to that drug and I can't remember who.  But Kalio is on her second round of meds and would probly know.
Will send a SOS out for you.

BEAGLE

[willows]

Your post sounded like you are living my symptoms!!!  Deep leg pain, especially when I lie down, numb tingly hands, just feel bad!!  All I can say is I failed tx and cruised for about 6 months, so happy to be off INF.  But when the exhaustion and shortness of breath started and the numby hands thingy, I got tired of my doc doin nothing and got a referral to a real Hepatitis Clinic.  Perhaps you should call docs back and be a squeaky wheel?  I'm squeaking now like crazy and it was the symptoms you described that made me decide to squeak.  Yellow is definetely not my color!!!  Kudos to you for being able to continue to work as long as you did, I could not.  Felt like everyone was figuring I was an IV drug user.  Maybe squeak some?  

Willow

[can-do-man]

zzzz was kind enough to bring it to the top. Thanks people

[DoubleDose]

I think that what you will find is that most probably your liver damage (if there was any at the beginning of tx) is probably no worse and maybe even slightly better than before tx.  I believe your post-treatment problems are chiefly due to treatment itself.  Many of us, whether SVR or not after treatment, have experienced the same sort of problems as you are dealing with.  Bone and joint pain, extreme tinnitus, fatigue, vertigo, anxiety, depression, and a host of other sx.  My take is that for many people therapy induces a sort of 'autoimmune' syndrome that mimics Lupus in many ways.  You may check in with a good rheumatologist who may have experience dealing with post-tx HCV'ers.  What some of us have found is elevated ANA's, sometimes elevated Rheumatoid Factor, etc. indicating some form of autoimmunity, but usually not exactly corresponding to either Lupus, or RA.  

I do not believe you will see much publicity regarding this post-tx syndrome, at least not from the drug companies, or researchers that are funded by them.  Nonetheless, I see these post-tx symptoms being described more and more frequently on the forum, and other sites.  I am well over two years post-tx, and SVR, but have many of the sx you describe.  Maybe, over time (maybe years, in some cases) it will diminish, or disappear.  Let's hope so!

DoubleDose

[Mister beagle bailey]

Thanks willow your the one I couldn't remember thathad the same problems as zzztime.
Hope your feeling well and your sxs are getting better.

BEAGLE

[can-do-man]

zzzz just brought the POST UP for thepChippy