Please can I ask if anyone has been given this and what your experiences are.
When I was first under investigation following TIA and diagnosed with vasculitis and SLE ( the vasculitis is now under dispute with neuro who says vasculopathy) the rheumy I saw wanted to give me this treatment.
I was first given cyclophosphamide and then quite quickly Rituximab, once I had the Rituximab I was transferred to a different rheumy (something to do with biological drugs I think). I have brought up the plasmapheresis with his team once but they dismissed it.
I am really keen to find out if anyone has experience if it.
Thanks
Louise
Written by
annie330
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I had this a few years ago due to having low platelets (TTP). I had a catheter inserted through my neck in order for the plasma exchange to take place. Unfortunately I did develop an infection in my line. The actually plamapheresis was quite intensive as I had to have it 25days straight for 3-4 hours a day. The process played havoc with my bowels and it wasn't a pleasant experience at all.
Despite this it did have the desired effect and my platelet count did rise.
I experienced Plasmapheresis back in 1997 after contracting TTP. To be honest due to the severity of the TTP I don’t remember a great deal, other than it saved my life! What I do recall was it felt like a washing machine had been plugged in me and my whole insides were juddering for the 4-6 hours I was on the machine. It wasn’t the most pleasant of experiences but like I said without it at that very moment in time I would of died, so I can only be thankful for that machine and the plasma donors. I was later diagnosed with SLE with TTP being a criteria of being diagnosed with SLE. Good luck, the machine will make you feel much better I’m sure!
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