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Discussion Starter · #1 ·
I was put on this med relatively recently (about 5 months now).

I had been to the doc and complained of severe cognitive issues including memory loss, having a very "vague" almost spaced out feeling and constant daily "migraine-like headaches" that wouldn't go away with any meds.

I had previously had an improvement in cognitive problems and headaches when put on prednisolone (at first) and then on imuran but these new problems were far severer than just “fog” and were there despite my disease being much better controlled. The previous problems were clearly linked to disease activity.

My docs (rheumy/neuro/GP) didn't want to change my actual "lupus medication" as my underlying disease activity had only just (3 months previously) started to show signs of stability after about fifteen months of being hard to control.

My GP decided to try Piracetam as it is a med that can act on the vascular system and therefore help if the problem was being caused by lupus vasculitis. It also has blood thinning properties which would do no harm if it was APS causing the problems.

This med is very little heard of and very little used. It is quite controversial as well. It is very safe and has few (or no) side effects but its effectiveness has not been proven. Not many studies were done on people and now that it is no longer under patent, no-one has much interest in doing them. My GP said it was worth trying. My neuro is very sceptical and has ordered extra tests to be sure that aspirin and Piracetam are sufficient. My rheumy believes in the med 100% for having tried it herself a few years ago.

I have never suffered either from placebo or nocebo effects.

I was put on the med and within 2 days my mental capacity had returned to near normal. I was able to work a little again (lupus permitting) as my brain was available! I had been unable to do anything (read a book, letter, translate…) for two months. Within 4 days the headaches stopped and they haven’t returned since. I now only ever suffer from a headache if I get too tired and it is recognisable for not being the same type of headache and I am still able to function on a far higher mental level.

For me this med has been pretty “miraculous”. It’s not a lupus med and its effectiveness is apparently not proven but I though it was worth including.
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