Cryoglobulinemia

[SJL]

I have posted further down re:post therapy. To all who answered please do not miss my entry of last night.

I would like to start a Topic regarding Cryo. I, in particular have been diagnosed with vasculitic neuropathy. Maybe the topic should carry this name? Regardless it is the result of cryo's attachment to Hep C.

Any suggestions on how I go about this and the proper subject title that should be used?

[Bulldoggergal]

Thank you for the info.  I've been tested after the first round of treatment I had way back in 1997 but the treatment didn't do anything to the HCV.  Did your HepC go into remission after the treatment?  

I just thought that as long as the HCV was active, then the Cryo would still be there too.

Jennifer

[sfbaygirl]

MissMiss;  Great to see you! I have been wondering about you!  You are so right about how the test is done. I had that converstation with HR last week. He agrees!  My new Dr. thinks I had Cryo that is now cured, after the 47 week tx. He looked at my legs and asked if I had had Cryo. I always wondered. Interesting, huh?  So, Jennifer...perhaps it can go away??? I was never tested for it, but my new Hepatologist seems to think I had it and it is now gone. I had some nasty skin disease that totally healed on tx.  Wonder.....

MissMiss,  call me or send me an email!!

Linda

[Bulldoggergal]

I've tested positive twice by two different labs and doctors and times (years apart).

I went to have the test again and they said they couldn't do it b/c it was so specialized...yet they sent results to the doc with a NEGATIVE outcome.

Question:  Does cryo cure itself?  I've had HepC for 20 years now and it seems weird it would just go away after testing positive twice.

Thanks,
Jennifer

[SnoWav]

http://dynamics.org/cryo/ASPARTAME/

[MissMiss]

Maybe you can post a link supporting that.  I have never heard of that.  Thanks.

miss

[MissMiss]

I too would like to know if you have had a cryo test and if it was typed.  The cryo test must be drawn into a pre-warmed vial and kept warm for one hour.  Then it is spun and watched for up to a week in the frig.  They will note daily if the abnormal proteins appear and will give a percentage.  To type it, they do two other tests.  Have you also had an RF/RA test?  Pos or neg?

If the cryo test is not drawn correctly you will not get an accurate reading.  I have found very few who actually know how to draw it and always have to tell them to double check how to do it.  Since I know how it is done I can watch closely and make sure it is done right.

The cryo proteins will precipitate with cold, thus the name cryo---.  So, do keep your digits warm and cozy.  

I feel so very bad for you that you have to deal with this.  I wish I could snap a finger and make it go away but we both know that won't cut it.  If I can help beyond the board I am at use the power at that yahoo place.  Best of luck and please keep us up to date when you can.

miss

[SnoWav]

should have done my research before I posted it is Aspartame not splenda

[SnoWav]

Im sure you already have read about the positive effects that Splenda the fake sugar has on Cryo

[ladybug52]

I've been curious since your first post what you were dxed with. I didn't read the final dx. Cryoglobulemia seems to be an often posted side, I had no idea it was related to neuropathy, I'm still trying to wrap my mind around the big picture. I have a friend with rheumatoid arthritis who has Raynaud's and
Sjogren's, I've asked her if she's been tested for cryo but she had never heard of it. Wonder if she's ever been tested for hep c?
Do you have any other cryo symptoms?
Here's a link linking hep c to rheumatic manifestation: http://www.hepcassoc.org/news/article26.html
You've probably done plenty of googling on your own but here's one that links vasculitis with hep c:
http://www.answers.com/topic/vasculitic-neuropathy
I feel for you since you had 3 failed tx's, but maybe you can find a way to treat and manage the neuropathy.
Good luck,
Bug
And something was mentioned about using steroids for tx.

[Kit07]

Hi Sandy.  I have looked at a lot of information about cryoglubulins because I have neurologic problems (1b, relapser).  I have never seen seen anything that suggests hcv treatment causes cryoglobulinemia.  But I HAVE seen a lot of posts from people who have other kinds of nerve pain and arthritis probably caused by treatment.  

My understanding is that chronic hcv activity triggers the cryoglobulinemia,  which is a form of vasculitis that causes nerve pain, among other things.  The  mechanical cause of cryos and neuropathy is small vessel inflammation that arises when bits of virus plus our own immune proteins create large molecules that gum up the vessels.  Your post is the first I have seen that suggests that cryos can lead to loss of function :-(    Here is a link to some info from Johns Hopkins University, including a creepy photo.  According to the Rheumatology medical abstracts I have read, combo tx is the best treatment for cryos, but now we know that doesn't always work.  I have seen some abstracts about the possibility of treating cryos with Rituximab, which I think is a fairly new concept.   I am having blood drawn for a cryo test next week

Questions:  I wonder if short courses of steroids would be ok for you, even though they are immunosuppressve?  Have you spoken with a rheumatologist?  Did you have a cryoglobulin blood test, or was your diagnosis based solely on peripheral nerve pain and/or skin problems?  Also, do you have any thyroid problems?  

Best
Kit07

http://vasculitis.med.jhu.edu/typesof/cryoglobulinemia.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17380399&query_hl=4&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=15792740