2040621 tn?1329858637

Cryoglobulinemia Vasculitis

Does anyone here have Cryoglobulinemia?
12 Responses
Avatar universal
Hi ..
There is a member here  "spectda" who had cryo... He treated his HCV  last year successfully and his cryo resolved itself as a result of the treatment.

I have linked below his profile site..and you may want to send him a private msg. by going to the "send a message " area there.

He is not here as often as when he was treating ,however he does check in periodically.

Not sure if you have a question specifically about cryo .  I don't have it myself ,however know a bit about it and I believe some others here may have some knowledge of the condition if you have a question..

Avatar universal

sorry ..here is spectda's   profile

317787 tn?1473358451
Hi I have or had cryo.  I was told it was from the Hep C, that my body had developed special proteins to try to kill the Hep C.  I was told the only thing to get rid of it was to get rid of the Hep C.   It has been 8 weeks since I finished tx and if I remain UND then they say I will get rid of the cryo
2040621 tn?1329858637
Hi Dee,  How long have you had Cryo?  I don't know if you ever really get rid of it so I've been told.  Do you do prevention from the cold? I've been learning to watch anything cold that touches my body even cold liquids that I drink.     I have had it for 3 years that I know of but I don't have Hep C.  I've been on treatment two different times but mine keeps coming back.  I've had kidney and heart failure because of it.                                                I am involved with a sight for Cryo on face book and most of them have Hep C.  I'm one of the rare ones that doesn't have the Hep c.   We have 40 members so if you are looking for support I'm going to give you the link.  Let me know if you want to join.  There are so many amazing people sharing a ton of information.  I was lost not knowing what was happening next until we put together this sight.  If you want to talk more send me a message.  
2040621 tn?1329858637
Thanks for sharing that info with me.  It is so kind of you to care.
317787 tn?1473358451
Thank you so much for the information.  I was told mine (there are 3 different kinds) was caused by the Hep C and hope it is gone now that the Hep C is gone it is gone.  I wish you the best.  The cold does not bother me at all, in fact my worst case was in July 2009 6 months after I relapsed.
Avatar universal
I had a friend who was unsuccessfully treated for it for years, had to work with a wound dr for the open sores that went to the bone and would not heal, could not handle the cold, hand and feet went numb. Finally dx'd with hcv and treated 4 or 5 years ago.....no more Cryoglobulinemia at all since before tx even ended.
2040621 tn?1329858637
That is so interesting and thank you both for posting for me.  I haven't come across anyone yet that has said "no more cryo".  That gives me great hope although I don't have Hep C.  Hopefully they will find my underlying disease and I will be as fortunate.  I have been treated with Rituxan for 4 weeks but only stayed in remission for 2 1/2 months that's when I was in kidney failure.  Then I did Rituxan and Cytoxan for 5 months after heart failure but so far I've only been in remission for the same amount of time. My doctors are concerned I will go into organ failure again.  So I am praying someone can help find out how to treat me.  
Thanks everyone for sharing with me.  If you have any other information I would really appreciate it.  I also have vasculitis flares from the Cryo but haven't gotten the sores like so many others.
I will share this good news with the others I know that have Hep C. It will give them a ray of hope today.

Sending all blessings of continued health and happiness. Marianne  
317787 tn?1473358451
Hi there, my liver specialist told me that treating the virus was the only way to get rid of it.
I am sorry you have it.  I know that when I was trying to find out what the red spots and then purple spots were along with edema and pain, docs did not know.  It was not until I went to a Hemotologist that I was diagnosed.
He tested me for lymphoma, lukemia, lupus, hep c.  
Best of luck to you
2040621 tn?1329858637
Hi and thanks for getting back to me.  Have you been treated for Hep C and did it help to calm down the Cryo?

When I started with the edema it was because I was going into kidney failure and the rash, which in my case is leukosytoclastic vasculitis. I included something I found on the web about it. the rash is also referred to as purpura.  When my Cryo is active the rash comes back and then I know I need stronger treatment.

The skin discoloration caused by leukocytoclastic vasculitis is known as purpura, which are small red or purple spots that are raised from the skin. In most cases, they may be itchy or painful. Others do not experience any kind of discomfort at all. These lesions usually remain small or they may combine and form larger spots or open sores. They may also obstruct the flow of blood to the skin, which causes necrosis or tissue death. Small vessel vasculitis can also occur internally, affecting certain organs such as the kidneys, heart, lungs, and portions of the gastrointestinal tract.

Different factors may trigger the causes of leukocytoclastic vasculitis. In most cases, it usually arises spontaneously with no distinct or identifiable cause. Often, it appears to be caused by misguided immune responses, in which the body treats its own blood vessels as intruders and attacks them. Allergic reactions to certain over-the-counter drugs, especially antibiotics, may cause it as well. Hepatitis, HIV, and other infections are associated with this condition too. Food additives and by-products may also set off allergic reactions and cause the small blood vessels to become inflamed.

I finish chemo in Sept. and now have been doing good for 3 months but the Cryo is active again and the rash is coming back.  i also went into heart failure so my fear is that I will have to go back on chemo because the autoimmune suppressants don't seem to be keeping it at bay.  

I'd be happy to talk more about it.  I had a biopsy of the rash to determine what it was.  it usually comes with the Cryo.  I have not had any lesions as of yet so i am fortunate.

Stay in touch.  Laughingnana
1477908 tn?1349567710
I tested positive for cryo prior to HCV tx. I achieved SVR and was again tested for cryo which came back negative!! I am surprised that more of us that are HCV positive aren't routinely checked for it, maybe because more are treating AND clearing, it isn't a priority.

Hope you find the answers that you are seeking regarding your vasculitis issues....Pam
2040621 tn?1329858637
I want to thank each and everyone for responding  to my post.  It is kind and  caring of you to share your experiences and your stories of hope.  You are in my prayers for a like willed with good health and happiness.
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