Platelets 20.Always up and down 20-100. Few symptoms. Not responsive to steroids Offered anti-D. How to weigh up risks? Take or not take?

[holcotts]

[amberyard]

I'm at 2-3k right now and after my spleen removal my normal is 30ish. I did anti-D twice before the surgery first time I have 8 weeks back to back and it last 7 good months. The last time last year 4 rounds and didn't take. I had no real reaction to the infusion, came home and took a nap. Felt I was on a caffeine high the next day but then the following day I slept all day and then slowly came back to normal then it started all over.

[Morgan]

That would depend on your symptoms. I have been between 20 to 30 for last 10 yrs with no treatment. Only occasional bruise and blood spots and fatigue. For some reason my count has risen to 80 with no intervention, So if you are suffering I would take what they offer otherwise I prefer my doctors no intervention. X

[kale7 in reply to Morgan]

hello, so you take no medication at all?

[holcotts in reply to kale7]

Hi there,

well now i have found a pattern. Every 8-10 weeks I am given anti D. My platelets rise above 100 then slowly fall!! Till below 20 then i get

treated again.........Anti D has worked very well for me, dont know if it always well. I get awful tired when plates are low. I dont work hardly at all, go to bed early etc but still play sport and love my family life.

not too bad really, glad i found a medication that doesnt affect me much! thanks for asking!

[Morgan in reply to kale7]

No nothing - my count seems to be hovering between 50 and 80 now - all I did was lose weight, exercise and cut down on sugar.

[NickyD]

If your ITP is stopping you doing things then you should take what medication is offered until you find the right one. If you have few symptoms why take anything?

[holcotts]

Thank you so much guys.

I guess I am not keen on treatment to alleviate symptoms - they arent that bad and I have resisted treatment for yonks

But what i didnt know was if if I should try stuff in case of risk - resgistrar mentioned 'brain bleed' and it spooked me.

I appreciate your replies Thank you.

Does anyone have a notion of what the risk is of spontaneous beelding - is that the main risk we are trying to avert?

(I think steroids are affecting my ability to think clearly)