Cryoglobulinaemia

[Raelene_Dojcinovic]

My brother currently has a few symptoms which I feel "may" indicate cryglobulinaemia. My problem is getting him past the GP (genaral practitioner). His symptoms are: bence jones protein in urine, peripheral neuropathy in feet (now progressing to the hands), vasculitis with a purple rash up legs, sometimes edema in lower legs and systolic blood pressure of 180 (now controlled with medications).
He was a spray painter but quit 2 years ago. He is 51 years old. His GP says its due to the chemicals. I finally nagged my brother to insist to his doctor to refer him to a neurologist. The neurologist was not happy, he confirmed the neuropathy and told him to go back to GP and refer to an oncologist and do some tests. These tests involved 29 blood tests, bone scans, xrays etc, obviously looking for myloma. All these tests came back negative. They did not test for cryoglobulinaemia.
My brother did have hepatitis C but was treated and cleared the virus about 5 years ago. Recent PCR shows it is still clear. He was diagnosed with rheumatoid arthritis in his thirties but has no major problems with that.
Other than the above he is very healthy, does not drink to excess, quit cigarettes 3 years ago and has not touched illicit substances for more than twenty years. He is of normal weight and has never had high blood pressure.
I asked him to suggest to his GP to test for cryoglobulinaemia but his GP said there was no need as his LFT's are normal and he would live to 102.
After all this, my question is: Could he have this disease even though now the hepatitis C has been cleared? I know they usually treat it by treating the underlying hep C which often reverses the syndrome. Does this sound like it is a possibility that this could be his problem? If so (or if not), what type of specialist would you suggest he be referred to? eg: haematologist, onclogist or what? He needs some follow up as the neuropathy is progressing which concerns me.
Thankyou

[Myown]

Hi,
Sorry to hear that your brother is going thru this. He is very fortunate to have such a nice sister that is looking for answers for him.
You are right we are usually told by our hepatologists that if we clear the virus we will rid the cryo if in fact we have it. Just guessing, but since your brother does seem to have symptoms of cryo - though he is SVR (congrats to your brother btw) there is a possiblility IMO that there is an another underlying disease and because you mentioned protein in urine, you may want to look into MPGN. Cryo is seen with this disease also. I am just taking a guess from what I have read about cryo since my diagnoses of hcv. You probably read that there are other diseases where you would see cryo too, lymphoma is another - I think its B-cell lymphoma, but you can find the info if you google the MPGN and also the lymphoma/b cell/cryo.

As mentioned the test is VERY tricky and most of these techs don't have a clue. I had it done several times and never had it done right. I never tried having it done at an Oncologist and maybe they would know how to do it, but when you have to start to explain how to do it to a tech, its over, you know its not going to be done correctly.

But your brother IMO has enough manifestations, the purple rash, protien in urine, PN, that a good Hepatologist should just say - yep, he has Cryo. Well thats just my opinion. I think a kidney Specialist would be of help too. I think they are called "Nephrologists?" This way he would be tested for MPGN......I am just guessing as far as these diseases - I don't want to scare you,,,but its worth asking about. You seem to be on the right track in your diagnoses of cryo - I think you are right and now its just to find the right doctors that can be of help.

Good luck and let us know what you find out.
take care,
MO

[whoaisme]

My understanding is that once you clear the Hepatitis you generally clear the cryo...other auto immune /rheumtoid factors could be at play but probably not cryo. The test for cryo is also a bit tricky and needs to be done by a lab that is familar with doing the test. I would suggest you refer him to a rheumotologist for further diagnosis.
Good luck
Su

[meNtoby]

Hello, and welcome.  This is very troubling about your brother, and it sounds like you are slowly ruling things out.  I don't know anything about the cyro, but hopefully someone more knowledgeable will see your post, and offer you a possible explanation.  You are very kind to be surfing for answers for him.  Best of luck to you,

cathy