Hepatitis

[8nickers8]

I have everything that Dawn 703 describes including severe nerve pain behind my right eye and the right side of my nose.  So severe that I had to begin Lyrica in 2005 and it doesn't rid me of it, just enables me to function.  Anyway, I am on a clinical trial and began treatment Apr. 19.  By week 2 I was UND.  Finished the 3 months of treatment July 9.  Just found out today that 4 weeks after finishing the study meds I am UND.  BUT I still have all the same symptoms.  Study Dr. said it takes months and months to see improvement if it is connected to the Hep C which I contracted at age 18.  I am 60 now.  How long does it generally take for the extra hepatic symptoms to abate?

[8nickers8]

Thank you for this interesting piece.  This is a guess but I believe that the interferon would help the cryo whereas the newer 7977 med would not because interferon is actually a med that supresses the immune system and was first used to suppress the immune system in transplant people.  Why is this important?  Because I looked at the treatments for the cryo and they are a med to suppress the immune system and possibly blood transfusions is what that article said.  Go figure. I felt so happy that i found an alternative to the interferon that is working well for some yet I think I lose out on the cryo issue.  I am going to talk to my hepatologist end of October when I see him.  I'm bummed out because I have a bit more pain not less.  The study doc said that it would take weeks and weeks and weeks if, in fact, the neuropathy is going to be made better by treating the hep c.  And still, I am not sure if I am hep c free for good.  I have a bit of a wait on that one.  

[8nickers8]

I too have worse pain now and it's really bumming me out.  I had this fantasy that I'd get treated and be UND and then the pain would go away.  The facial neuropathy is the worst. I have all those extra hepatic symptoms we spoke about.  It is cryoglobulinoma.  I have type 3 of the cryo.  There are, apparently, types for everything.  

[rivll]

I treated with 7797 and riba. I feel like I am waking up from a deep toxic slumber. (Sleeping not such a Beauty.)
I still have serious joint and muscle pain. Though in many ways I am feeling better sometimes it feels like those problems are worse, though I suspect they feel worse because I am feeling better and more alive in other ways.
I don't know the answer, but it would be nice to know these symptoms will gradually leave us too.

[Idyllic]

Your mention of Cryo is really interesting. I read once that certain extrahepatic symptoms are supposed to clear up as treatment progresses. I good example is Cryo. I have been wondering if extrahepatic symptoms like Cryo resolve in the same manner with the newer treatments (such as the Nucleosides and nucleotide polymerase inhibitors).

I don't see why they wouldn't but than I am in over my head with this topic. I know that Interferon Alpha or PEG Interferon plus ribavirin is one of the treatments for HCV-related Cryo (&/or Rituximab); so I suppose I was wondering if the interferon-free meds would have the same result when it comes to Cryo.

http://www.ncbi.nlm.nih.gov/pubmed/15751068

I am not sure this image will appear:
http://www.medhelp.org/user_photos/show/288857?personal_page_id=1282072

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To be honest I think your question is an interesting one. It would seem treating the underlying illness (Hepatitis C) is essential in treating many extrahepatic symptoms however I wonder if 7977 & Ribavirin yields the same results. In other words, I am wondering to what extent Interferon plays a role.

I wish others who have had extrahepatic symptoms resolve with treatment would respond.

[8nickers8]

Thank you, Dawn I so appreciate you writing this.  I so love it when people are kind and supportive to one another.  And I so respect people who realize stuff and go back and say, "sorry".  I have to do the "sorry" alot so I wasn't judging.  Thank you for what you wrote.  It's wonderful that you are taking good care of yourself.  I can't remember are you UND?Sorry I forgot.  I love hearing it.  What clinical trial were you on?  

[8nickers8]

Thank you so very much for taking the time to write this.  I really appreciate it.  My most troubling symptom is that I have like a neuropathy behind my right eye and the right side of my nose.  I also became very chemically sensitive in 2005 around the same time so I cannot even walk down the detergent aisle in the supermarket without great pain in my nose and head.  I also have this joint pain in hands, legs, everywhere and I know that is linked to the cryoglobulinoma which my Hepatologist told me I have.  I guess I was being silly thinking that once I was treated all of the pain would go away.  I so want at least the facial pain to go away. It's like having a mask of pain on all the time.  That is what I take the Lyrica for as well as pain meds which they have me on also.  Not fun.  Thank you for the contratulations.  I'll feel better once I pass the 24 week mark as und.

[Dawn703]

I did not mean to offend you, I was so taken aback when I saw my name in your thread, never had that happen before. I do apologize, I felt bad after I hit the post a comment button and that is why I wrote the second message. We are definitely here to support one another, and I hope my momentary bad attitude has not changed your mind about that. If you have degenerative disc disease, unfortunately I think it is not associated with HCV. I say unfortunately because if it were, we would be pain free once the virus left our bodies. It felt like it was a cruel joke for me that I was pain free the whole time on treatment, then bam it all came back again. but it made me realize just how miserable I was before treatment and just lived with the pain. I have a new mindset now since being pain free for 6 glorious months; I have been walking more, on the elliptical, doing more stretching, taking up yoga, and maybe see an accupuncturist. Just trying to improve my muscle tone in hopes of stabalizing my back. I also made an appointment with my ortho guy who I havent seen in like 7 years, to determine the status of my disks. when I saw him last I had one disc comlpetely gone and another partiall degenerated. Good luck to you and I hope you get some relief.

[8nickers8]

I really don't want to have to deal with attitude on this community.  I want to feel like we are here to support each other, be honest, but also kind, please everyone.  

[8nickers8]

I was not saying that you said you had severe pain, I was saying that I have everything that you have including severe pain, meaning on top of what you have.  Sorry about my wording.  

[8nickers8]

Pain started before treatment. I have the degenerative disc stuff and the joint stuff.  Thank you for the link I will read it.

[Dawn703]

If you are referring to me mentioning extrahepatic manifestations, I did have some and they went away 2-3 weeks into treatment. I also had some joint pain in my hips and shoulders. Hip pain from my degenerative disc disease and shoulders from probable arthritis (which I have had for years). This pain went away once I started treatment, I thought they too were then extrahepatic manifestations or wished. However, by the time treatment ended, the pain came back. I found out that interferon has anti-inflammatory properties, hence taking my pain away. It was just wishful thinking on my part that the pain was extrahepatic manifeststion as well.

Did you have this pain before treatment, develop it while on treat, or after treatment? I'm not too sure anyone can answer your questions. Here is something to read:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

[Dawn703]

What are you talking about? I don't have severe nerve pain and I never described having severe nerve pain.