Post treatment symptoms of Pegulated Interferon\Raboviron

[PeggyE]

My wife has succesfully completed 48 weeks of treatment for HepC using the Pegulated Interferon\Raboviron combination.About the secound month of treatment joint pains developed in her hips and elbows.Treatment finished in January 2006 and Blood tests in July indicated no virus detected. She has returned to work in September on a limited basis.Her pain in hands,hips and elbows has been increasing at an alarming rate. She has been in contact with her doctor regularly, who has been very good in doing tests for different arthritis's which turn up non detectable.She will see an athritic specialist in London in November.  To date I have found very little on Post treatment effects\symptoms. My question...does this treatment exaserbate arthirtic symptoms in patients post treatment?

[DoubleDose]

I think its plain and simple a case of post-tx after effects, which seem to be more or less a typical outcome for many of us.  If you look at the attitudes five years ago versus today on post-interferon syndrome, you will see that the issue has gone from being something that many people denied existed, to now being pretty plainly recognized by almost all forum members, and a rapidly increasing number of doctors, in many different fields.  The complaints of rapidly escalating, pronounced problems after ending therapy have been repeated over and over by countless people on this forum, as well as in international surveys.  This is something the FDA needs to be much more aware of, through direct feedback from us, and our physicians.  Many of us are suffering long term medical issues directly as a result of having done large amounts of interferon, which is indeed an extremely powerful, immune system modulating drug, and that also is capable of creating major changes in the way that our nervous system, immune system, and our brains work.  Some may bounce back to normal in a few months...but I believe we are seeing a large group that continues on with a wide range of nasty physical problems that they DID NOT have before they did the tx.  Its no coincidence that all of these problems begin after ending therapy...it is a direct result of the therapy, from what I have experienced, and observed in others who suffer from this syndrome.  Some medical centers term it "post-interferon syndrome", others have just called it long term interferon after effects....regardless of what you call it...it is a reality...and I have yet to find, or read about any doctor that knows what to do about it, or how to treat it.  Let's all keep demanding answers, and more research.

DoubleDose

[Xville]

Just want to say it's disappointing to be getting these rough symptoms after treatment ended when I was anticipating feeling better.  Just want to say that.  I don't have the brain power to come up with anything more intelligent for all you genius types. I guess the meds fried my brain.  I hope I achieve SVR but I'm about over the whole mess anyway. Screw this.

[Tamieka]

Hi there,
I am new to this site, and is the first site I am a member of.  I finished 48 weeks of combination treatment at the end of March 2010.  I am going tomorrow for my 3 month check up.  I am surprised to hear so many have post symptoms.  I was left with a very underactive thryroid, which has seen me gain 7 kilos, as well as facial acne and other accompanying side effects.  Thyroxine seems to be helping a little with the fatigue, but not the weight nor the acne.  For the past two weeks, my lips seem to burning 24/7.  It's such a shame to go through 48 weeks of hell as I incurred every side effect of therapy severely except for insomnia, as I have a four year old with no help except for one day per week, and then to end up with ongoing symptoms.

I do wish everyone the best of luck, and hope all your post symptoms seem to disapear over time.

My son is calling me, better go.  

I am so glad I am part of a site that I can relate to, as none of my friends know, my family have not been supportive and no longer have a relationship with them, and it's not the same only having to speak with my husband and specialist.  I look forward to some company.

cheers,

[Upbeat]

It all comes down to Quality or Quanity of life.    

[jivacite]

I was treated twice..once in 2000 with the 3 time a week combo and in 2003 with the PEG combo. I had no choice. My liver was stage 4 and I was given 2-5 years to live. Well I'm still here 5 years past my expiration date but things are a little sour. It seems the biggest lasting effects are fatigue, bone damage and possible brain and/or DNA damage. But just my opinion. Mine are fatigue, tinnitus, and a little short-term memory problems. We are slowly being recognized by the medical profession...their little lost lambs. I still have no detectable viral load so all in all I would rather be on this side of the grass. But my advice to anyone thinking about taking the therapy....only do it if your liver is already torched. Otherwise clean up your act and live long and prosper!

[hippygem]

Forgot to mention, have you looked into Fibromyalgia, body aches and pains, mention it to your doctor.  It is a symptom of HCV, and treatment, and the general population also can get it too.

Linda