Vasculitis after surgery and implants?

[RareLily]

I suddenly developed severe central nervous system symptoms after surgery and repair with titanium plates and screws to repair 2 fractured bones in my ankle last year. Cerebral MRI report which followed stated several areas of what appeared to be small vessel vasculitis. Previous issues with Lupus/sjogrens/polymyositis treated with steroids, however severe dizziness, memory problems, and cognitive issues are all new, debilatating, and frightening. My C-reative protein also spiked 4x higher than normal. I fear this will not clear up unless hardware is removed since everytime I try to lower Prednisone dose (that does help) , these symptoms either come back or get worse. All comments and experiences from others appreciated.

[AndrewT]

Dear RareLily,

Sorry to hear that you are suffering, especially so suddenly. My 'gut' feeling is two fold; One if a form of auto-immune/vasculitis has been 'triggered', by the surgery removal my well not and could make things worse. Secondly if this condition has developed then Prednisolone may well help you, in the long term.

I am, and have been, on pred.,along with other drugs, for seventeen years now and I can, almost certainly, never come off them. A very small price to pay for my life, I feel! I only mention this to give you a sense of, how can I put this without hurting you or appearing rude- 'proportion'. I'm not really one for parables but....I did actually meet, some years ago, a man who was missing part of both middle fingers, on his left hand. After a time I just 'had' to ask him about this. Apparently he had been a sailor, during the war, the ship was sinking, and he was trapped by his hand- he only realised that he had 'torn half of it away' when he had reached safety. Sorry if this has 'rabbled on', a little- that's me, all over!

I hope this is of some help anyway.

Best wishes AndrewT

[RareLily in reply to AndrewT]

Thank you, Andrew. You did not appear rude or hurtful at all, but actually it touches my heart that other suffers halfway around the world reach out with words of clarity and comfort (for loss of better descriptions myself lol). It is so true that, basically, we are fortunate for everyday we are living with these unpredictable autoimmune diseases. I, too, have been on Prednisone far longer than I ever wished (11 years and counting), however I also realize that I probably would not be writing this had I not tried something, (toxic or not), to slow the damage to my major organs. Here lies the problem, the erratic behavior of these diseases leaves everyone (including the experts) wondering "if, when, or what" when all any of us can really do is to live in the moment. If I recall, you had a kidney transplant?...another form of autoimmune rejection concerns.... I hope all is still going along well for you, and I appreciate you sharing your experience.

Lily