Need documentation for post treatment joint pain

[Teri57]

I underwent treatment twice for HCV.  Once in 1999 for six months with interferon shots 3x a week and again in 2004 with interferon shots daily for six months.  I am still virus free but the past two years i have continued to go down hill where my joints are concerned.  I had to leave work last year and am currently making my monthly visit to the pain clinic just to be able to get out of bed each morning.  I've had neck surgery of a double fusion which only seems to have caused further inflammation.  My pain is very difficult to prove and so far I am still being refused my LTD that I paid premiums on for years.  Does anyone know if there is medical documentation regarding the after effects of interferon and ribaviran treatment that includes joint inflamation?  My current doctors do not seem to have a clue and pretty much blow me off when I bring it up.  I haven't been able to unearth anything official on line.

[Willy50]

I have heard two members use that term and repeat it; coined from the use of doctors at two different hospitals.  That does not mean that it is an accepted term or that there is a page for it somewhere on the internet.  I personally have long felt that this will not get much attention while interferon remains a key component of treating.  After it is no longer used, there may be a new interest in understanding what this is exactly.

Frank Perrotta used the term several times in the thread (Dec 7, 2011is one) and attributed it to the mayo clinic.  I have another acquaintance whose doctors used it from a different state.  Understand..... there should be some term used when discussing these post TX issues, but medical professionals are loathe to create a label without proof or documentation.
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http://www.huffingtonpost.com/david-katz-md/dogs-trauma-ptsd_b_1136608.html

"All too often, such individuals wind up encumbered with a "syndrome" -- the ignominious rubric applied when the full legitimacy of a "diagnosis" cannot be achieved. Often the distinction between syndrome and diagnosis resides in the application of diagnostic testing. If technology can show it's there, you can have a diagnosis. If we have to take your word for it, you are stuck with a syndrome -- which all too often means less respect, for you and your condition alike.

[Idyllic]

Do you happen to have the link for that? I have read (both here and elsewhere) that the Mayo Clinic coined the term post-interferon syndrome however I strike out every time I search for it on that site. Thanks in advance.

[Willy50]

You will note that there are 565 replies to this thread.
http://www.medhelp.org/posts/Hepatitis-C/Long-term-side-effects-of-interferon/show/866107?page=1

If you use the HCV board search engine (not the entire board, but one for the hep c forum) you will find many such threads.

You can also type in your symptoms to further refine your search, such as joint inflammation.  Part of the issue is that HCV can cause this, or post TX issues, or externally caused genetic RA, or other causes.  It is hard to directly prove one cause.

You may be able to document your issues this way.  I can also tell you that many people are on disability due to this, and so there may be some legal precedents where people have already been granted the disability based upon similar complaints.

My understanding is that the Mayo clinic is calling it PIS; post interferon syndrome.  The "syndrome" part of that label kind of indicates that they are aware there is an issue, but the do not have adequate diagnosing tools and they are striving to work on cause and cure.  Many doctors are surprised at this outcome in spite (as you will see if you read the thread and others like it) that yours is not an isolated case.

best,
Willy