plasma exchange

[Alvess123]

I am having another plasma exchange for cryoglobunmia. Has anybody else had this before any other type of treatment has been tried?

cheers

a

[Sima1952]

I don't have cryoglobulinemia but have had 6 plasma exchanges in a week, which was not planned. After the initial talk through by a male Nurse who talked a lot, then the slight accident, where l lost about ½ pint of blood caused by a loose connection; that Nurse didn't come back. Everything was fine when all of the other exchanges were done; mine condition is to do with Vasculitis.

[John_Mills Volunteer]

Plasma exchange is used mainly to give a quick fix by removing the nasty bits from the blood - like a selective filter. So in your case it would be the cryoglobulins I guess. This buys time so that the drugs can take effect BUT you can't do the PEx whilst you are on the drugs as it would remove them too. Once they are happy that the cryoglobulins are down to a safe level, they will introduce the drugs & stop the Pex. Have you been tested for Hepatitis C. This is very often associated with cryoglobulinaemia.

[Alvess123 in reply to John_Mills]

Thank you, i was treated and cleared "cured" from hepatitis C 4 years ago. After all this time they discover that my ongoing health problems are due to Cryoglobunemia! From what i have read PX is a last resort or a preparation for drug treatment.

This will be the second PX but no mention had been made of drug treatment.

Last time (6 months ago) i had a 5 day course, this time its only 3? I am getting very little info from the doctor, and i haven,t found much information about it online.

a

[John_Mills Volunteer in reply to Alvess123]

Pex can be a life saver, but it's not without its own risks, so should not be over-used, unless the cryo is rapidly progressing & involving critical organs eg kidneys/ lungs/ gastro-intestinal/ CNS. If the hepC infection has been successfully treated, then you would probably be in line for steroids +/- rituximab (rituxan). You should press your docs for a thought through long term treatment plan, not just day-day.

[Alvess123]

thank you

a

[Alvess123]

Thank you, Rituximab was mentioned in a letter a year or so ago. 6 months ago I had PX for 5 days and this time it is for 3 days. My mains symptoms are extreme fatigue, lack of concentration and aches and pains.

Would be good to talk to somebody with this condition. I am wary of more drugs, I was fine before I found out I had Hep C. As soon as I started on the interferon my health plummeted and I have been ill ever since

Cheers

A