A very hopeful update

Hello everyone,

Just thought I would write to give ITPers out there some hopeful news!!!

I have chronic ITP and this is my fourth relapse with the disease. I am currently on 20 mg of prednisone and starting 10 mg tomorrow.

Yesterday my platelets were at 399k. :laugh: So I am hoping and praying that this will go into remission.

I am just really really happy because it has been a very long 3 months on this round of ITP for me. I have been on 100 mg of prednisone and was on it for 4 weeks, then 80 mg for 3 weeks and then started the slow taper every week. My counts started at 15k, went up to 60k, crashed to 31k on 60 mg of pred so my doc decided to up my dose to 100 mg.

I did take supplements and made changes to my diet as well and I think they helped a lot too

If you are newly diagnosed, hang in there!! It does get better

Pawee

Wow! What amazing news that is! That is wonderful! Just curious, what type of treatment are you doing besides Prednisone? How long have you had ITP? The news of your remission is awesome...399, what a high number!

Natalie

Natalie,

I've only tried prednisone so far on this round of ITP. I've always stuck with prednisone and since my hema says I seem to tolerate it will, we have stayed with it. She did discuss other treatments in case the pred stopped working.

I've been off the pred for a month now and my platelets are at 354k. Whew!!! I get blood tests every other week until I see my doctor this June and if they are still normal then we will go to every 3-6 months.

I just want to let everyone know though, esp the ones that are newly diagnosed, to hang in there. During the first month, after my ITP resurfaced, my counts went up and down a lot even when I had Dex and Prednisone and I was getting very fraustrated. My hema advised me to just wait it out a while, give my immune system time to calm down and heal. So I stayed on a high dose of pred for weeks before I even considered a taper.

When my hema was ready to try and taper, my platelets were in the 200k range, I felt I was not ready and told her that so we waited some more. Right around the time she told me I absolutely have to start the taper, my platelets suddenly went up to 450k and we tapered very slowly this time (10 mg/week) and my counts have stayed in the 350-400 range since.

Hopefully, it will stay there for a very very long time

Again, our bodies all behave differently and react to meds differently too but letting our immune system calm down and waiting it out on pred seems to be worth a try. I had anxiety attacks, food cravings, headaches, acne, the hump on my back, the moon face, falling hair, sleeplessness etc on pred too but after one very bad anxiety attack and a letting it out on a rant here on the PDSA forum, I finally decided to get a grip of myself and decided to focus on healing and on the positive.

Blessings to all of you out there!!!

Pawee

Good for you! Sure seems like a good remission is coming!

Good to hear, hope they stay up for you