Has anyone had a drop while on high dose pred?

Hi everyone!

My name is Helga, I'm icelandic and living in Norway and I just got diagnosed 3 weeks ago today, with levels at the lowest at 4. I got platelet-transfusion and 100 mg prednisone and climbed to 238 in just 2-3 days.

Unfortunately the haematologist was on holiday when I was admitted and I got tapered down from 100 mg pred to just 40 mg in 7 days.

A week after that I finally met the haematologist and my numbers were down to 39, so she put me back on 80 mg pred and today, a week later my counts were down to 9! :ohmy: She said she didn't find it too worrying, cause my platelets were otherwise looking healthy and good and told me to keep up the 80 mg + tranexamic acid and come in for new tests over the weekend. She seemed to think this might have something to do with me being tapered off too fast in the beginning, and hopefully things might pick up again, given a few more days. Is there anyone who has experience with a drop and then rise again while on this high dose?

This is all very new and scary for me, I'd never even heard of this illness before, so many thanks for all answers

Helgafj:

Hello. I'm glad you found us. You did have a great initial response to Prednisone, and you would think that the response would continue to be good. Normally it does work that way, but sometimes weird things happen that can't be explained. All you can do at this point is wait until your next CBC and try not to worry. It might just take a bit more time for your counts to respond, and you could be back up by next week.

That first doctor dropped your dose way too fast, so it could just be that your platelets have some catching up to do. It would be a strain on the body going from 100 to 40 to 80 in a short period of time like that.

Thank you for reassuring words, Sandi! I think my haematologist is hoping the same; strain on the body, takes some time to kick in - she's a very reassuring and calming lady, which is invaluable in this situation! I'd gotten a few small bruises, so I wasn't expecting high numbers, but at the same time I wasn't expecting such a big drop, so I got very shocked and scared. It makes it even harder when it's so unpredictable!

ITP is very unpredictable and that is hard to get used to. Every time you think you have an idea about what is going on, things change. You have to kind of go with the flow and expect that things don't always go the way you think they might. It takes time to get to that point but most people do.

Thank you. I guess it'll just take some time to get used to; just one month ago I'd never even heard of this illness! And platelets were something I never even thought of - and now it's all I think about!

Hæ Helga,

Ég greindist með ITP 2003 þegar ég bjó í Danmörku. Mátt senda mér tölvupóst ef þú hefur einhverjar spurningar á ernahlif@hotmail.com.

En já, ég var látin á 100mg en féll alltaf í blóðflögum þegar ég var tröppuð niður....


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Helga