cryoglounemia

[Alvess123]

I was initially seen by a neurologist, shifted to a haematologist and i have asked to a see a nephrologist,which will be on Monday. I had 5 days of plasmerpheris last week and the fatigue has improved radically. (i got my life back)

However it has only helped a little with the aches and pains all over. I am aware that this is not a cure and i am a bit worried that nobody has discussed a way forward IE medication to cure me, if there os anything.

Dose anybody have any suggestions of anything i need to ask the nephrologist on money? I have no problems with my Kidneys but the person i am seeing specialises in Vasculitis.

thank you

alan

[Steven_buckley1GPA]

Ask to be referred to a Rheumatologist as well,good luck.

[Alvess123 in reply to Steven_buckley1GPA]

thank you

[John_Mills Volunteer]

Hi Alan, Cryoglobulinaemia is an especially rare type of vasculitis and does demand the attention of someone with full knowledge and experience of the disease. Whomsoever you see, ask them how many cases of cryo they have treated!

It is often associated with the hepatitis C virus, in which case it would also need antiviral drugs for the infection.

There are 3 lines of treatment according to the severity of the disease. If it is not severe (eg kidneys not affected) then just treating the Hep C might be sufficient, but in more severe cases rituximab usually works well in addition to antivirals.

Best wishes - John

[Alvess123]

Was cured of Hep C in 2011 That is when all these problems started. I have looked at all the symptoms of cryo and I only have fatigue, and Reynauds. No purpura which seems to be the main one?

Alan

[AndrewT]

Dear Alan,

I don't know your condition specifically Alan, but you could do (far) worse that getting a referral to Dr David Jane's team, at Addenbrooke's Hospital Cambridge. Dr Jane is the leading expert, in all 'things' Vasculitis/Auto-immune-though Susan would say 'One of them'. Please do see if you can get a referral Alan-I said this to someone else, a few moths ago...Only to find that he lived in South Carolina!

Can you let us know how you get on, please.

Very best wishes AndrewT

[Alvess123]

thank you, I have an appointment tomorrow with somebody at the Royal Free Hospital who specialises in Vasculitis. I got the name from the VasculitisUK help line.

Hopefully i will start to get some answers.

Will report back here

alan

[Alvess123]

I went for the appointment but it was just a box ticking exercise. It was with the Urology dept and the leader of that team Professor salami specialises in Vasculitis. I was hoping to see him. I just got to see a junior urologist who knows very little of my condition. She was very nice and went through the motions but as i do not have a Kidney problem she was out of her league. oh well so it goes.

alan