Cyclosporine

Good for you Valerie!! We have to be "active participants" in our own treatment - it's the only thing we can do to feel somewhat at peace with ITP.

Very happy to hear your counts are up!

Cindy Ann

Valerie:

Of course the goal is to keep counts up, but crashes will sometimes happen while the dose is being adjusted. Some patients crash right before it's time to get the next shot. I wouldn't agree that most people only need the shot once every two weeks, but I would have been hesitant to get the shot if my counts were 150k. It's a judgement call that may or may not work in your favor. You don't want counts too high either. At least now you know that Cyclosporin isn't really doing much to keep counts up at this point. That's a good thing to know, but a shame that it isn't dong much.

I'm glad that you are taking charge though and feeling confident about things. I hope it's smooth sailing from here on!

Sandi,

It's such a double edged sword. This has happened 3 times since January where my counts will be high when I go to doctor after 7 days, he doesn't give me Nplate and I crash 3 days later. I go to doc Tuesdays and crash on Sundays.....I'm guessing because that's when the exhaustion and petichae strike with a vengeance. I think in a perfect world, giving me Nplate every 9 days would be the best fit, but that's not really an option since my schedule is so hectic. I'm hoping they will give it to me every week and gradually decrease it until I'm around 50. I don't want to have clots or bleeds so its def a balancing act. I do however trust dr. Mcrae's judgement, so I think he will guide me in right direction. However if I am unsure I no longer feel intimidated to bring in research and ask questions.


I think you are right, I not think cyclosporine is working. He said he may begin weening me off when I see him in June. I'm not too disappointed because at least we know something works just have to perfect the dosing. There are other autoimmune suppressants out there that could work as well. You never know. Lots of trial and error!


Thanks for all of your continued support! Pdsa has really enriched my life while going through this annoying disease.

You'll get there. It takes time to stabilize. A good doctor can make all the difference!