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1433307 tn?1300339642

HCV, Cryoglobulinemia & Peripheral Neuropathy

Hi Everyone,

I have had hep C for 25-30 years. I am Genotype 1b, with fibrosis 1-2. It hasn't caused me too much trouble over the years exept for some mild upper abdominal pain. I found out earlier this year though that I also have cryoglobulinemia that causes vasculitis, after presenting to my dr. with a purpuric rash on my lower legs. I have also experienced numbness in my hands at night & stinging feet etc. My GI sent me to a Neurologist who said I have Vasculitic Peripheral Neuropathy. My GI said that considering the state of my liver wasn't too bad he wouldn't advise tx at this stage unless the cryo is causing me too much trouble but doing tx could cure the cryo. The Neuro said that if I treat the hep C there is also a chance the PN could get worse. So my question is. What has been other people's experience with tx who have HCV, Cryo & PN. Has it gotten better or worse or has there been no change?

Thanks
Aussielee
14 Responses
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Avatar universal
If the test is done wrong for CRYO, will it atleast be correct for POS/NEG
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Avatar universal
Hoping for SVR and resolved cryoglobulinemia soon.  I had a friend treat successfully recently and her cryo is gone also. Just thought I'd bring up the thread since there were a couple of post recently about cryo or vasculitis.
-Dave
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1433307 tn?1300339642

Thats great, glad you no long have cryo, That gives me alot of hope.

Aussie Lee
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Avatar universal
Congrats on getting rid of it, you must be relieved. I hope the same happens with the hcv soon.
Take Care,
Dave
Helpful - 0
99052 tn?1270983520
I was tested a couple of times for cryo after TX at a large teaching hospital and came up negative,I thought it was gone because I have not had any of those nasty symptoms of cryo  anymore
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Avatar universal
cryo often goes into remission during tx if it is not completely cured. Were you tested for cryo in a proper facility a while after treatment? That is the only way to know if you have it. If you did not use a lab that does the procedure correctly you can also get false negatives.

Glad to hear you got rid of it,
Dave
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99052 tn?1270983520
have 1 a hep for around 39 yrs grade 1 stage 1 last time I looked, did 48 wks of TX 5 yrs ago did not cure the hep but no more cryo or numb arm or hand. Waiting out the new drugs but not sure if I will TX again.
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1433307 tn?1300339642
Thanks appreciate all your information & advice.

Aussielee
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Avatar universal
My point was... I wouldn't allow him to dismiss it so easily. Course, as Dave pointed out, we're not doctors, and we don't know you.

Now that I reread it, my post does convey a sense of alarm, which was not my intention. I only wanted to stress that my physician seemed to think it was pretty important to get cryo under control. There are probably other factors in your case, most notably the PN and possibility of IFN tweaking that a bit.

Like your team there, my doc is part of one of the most respected hepatology departments in Los Estados Unidos.

Best of luck my friend.

Robert
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Avatar universal
Remember that we are not doctors. we are only relating our own experience. Your own doctor knows your condition better then us. People with cryo can have no ill effect, but when you have cryo with vasculitis the doctors I have seen said the same thing as Roberts. treat now! Another doctor may see it differently. The intent is not to instill fear in you, just to make sure you are getting the best care. It sounds like you have a very experienced medical team.
- Dave
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1433307 tn?1300339642

Thanks for the advice, Wow,I didn't realize it was that serious. Was hoping to be able to hold off for the newer drugs but it looks like treating now is probably the best course of action.
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Avatar universal
Dave is exactly right. Cryo is not to be taken lightly. I was diagnosed in March and complained of mild joint pain. My hepa immediately ordered a cryo test, which was negative.

Because my liver damage from hcv is minimal, I was advised to wait for new drugs. Had my cryo been positive however, she said she would start treatment of the hcv immediately in an attempt to eliminate the cryo.

I'd step it up at this point. Good luck.
Helpful - 0
1433307 tn?1300339642

Thanks Dave,

I attend a hepatitis clinic run by a large & well respected hospital in Sydney. The GI I see is also a hepatologist that specializes in hepatits c & has many years experience so I trust what he says is correct. I overheard him telling the Neurologist something about the number two when talking about my cryo, I think he said  it's not too bad it's two log, whatever that means,but I could be mistaken. I shall ask at my next appointment. I know my platelets are a bit lower than normal but nothing serious. This is all a bit scary as I had really no problems for decades & then all of a sudden I have these really strange symptoms. Glad to have found this forum though. Thanks for all the information will check out the links you have provided.

Cheers
Aussielee
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Avatar universal
Cryo with vasuclitis can be a serious condition. The treatment for cryo is to treat the underlying disease. If you have cryo that is caused by hcv, you may cure the cryo when you cure the hcv with interferon and ribavirin plus perhaps one of the new protease inhibitors when they are available next year. You should see a hepatologist not a gi doc since this can be complicated. They may also refer you to a rhuematologist who normally would be the doc to diagnose/treat cryo.

Some people on the forum have cleared cryo with treatment, some have not. do you know your cryoglobulin level? the test has to be performed at a lab that uses special test tubes that a warmed to a specific temperature before they take your blood. The process to accurately determine your level takes several days, they separate the serum from the plasma and reduce the temperature in increments to see when and what percentage of cryoglobulins develope. In the US most labs will say they can test for cryoglobulinemia but they don't do the test properly. If you are positive with any test, your are positive, but the level of cryoglobulins may not be correct which is important. large teaching university hospitals will often (not always) have the proper equipment for performing the test. You have to ask the lab what their process is. If they don't warm the test tubes and immediately deliver it to the lab the result will not be accurate.

Have they diagnosed which type of cryoglobulinemia you have? there is type one two and three, type two and three are often associated with HCV and normally you will also have rheumatoid factor in your blood. The rheumatoid factor can mean that you have rheumatoid arthritis also, or that you have the rheumatoid factor that mimics the real thing in many hcv infected people but is not really rheumatoid arthritis.

How often does the vasuclitis appear? have your platelets been checked to rule out other causes for the vasculitis rather then the cryo?

here is some information about cryo that you might find helpful:

http://emedicine.medscape.com/article/329255-overview

http://dynamics.org/cryo/Cryocrit.html

http://www.hcvadvocate.org/hcsp/articles/Bonkovsky-2.html

http://www.faetc.org/Hepatitis/Patient/Cryoglobulinemia.pdf

Welcome to the forum.
This is a lot to digest.
Take care,
Dave



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