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back on Promacta, tapering pred

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12 years 2 months ago #37755 by poseymint
back on Promacta, tapering pred was created by poseymint
I'm tapering prednisone and back on Promacta again, 25mg. I've taken Promacta twice before in 2011-12. side effects- first few days headache, then fatigue,loss of appetite, a bit foggy, and kind of weird detached feeling, like nothing bothers me- hey maybe thats what calm feels like, I've been on pred so long I've forgotten!

I've been on 7.5mg prednisone since early 2012 (off and on for 4yrs prior). This year my counts have been 8, 9K, 11K, 8K. I've never had significant bleeding- I used to worry but now I'm comfortable with counts around 10K. Lowest recorded was 1K with no bruising, nothing. theres a good article on platelets becoming activated at low counts somewhere around here, I believe that describes my situation, plus perhaps those dear little micro-particles! awww

So being on pred long term has caused some bone loss- not good. Also likely my adrenals have atrophied- thats a worry. Hemo said they "should" come back- not completely comforting but I'm hopeful.

Began tapering to 6.25mg for a few weeks and felt fatigue somewhat depressed, aching legs and feet. Then last week I got the flu. Felt terrible, but still went ahead and tapered pred to 5.5. That may have been a mistake.

Then I got confused and took only 3mg pred for two days.(?!) I'm using 2.5mg tablets and am not thinking clearly at all. oh boy did I feel it! headache and nausea- I thought maybe its the flu? until I realized what I had done. But what was interesting was in the afternoon and evening of those days I felt really good, like my adrenals were kicking in. A really nice sense of well-being, just feeling really bright, life is good. I experienced that before when tapering pred- the moment when my adrenals started back up again it was like- yah, this is what its like to feel good again.

But that didn't last and by morning I felt like the walking dead. So I went back to 5.5mg to do a slower taper. Feeling okay, not much nausea, no headache, enough energy. Plates are at 17K after 3 weeks of Promacta 25mg- and right after I had the flu. yay I'm happy with that, and I think it will go up. I don't care about 50K or whatever. I could achieve that by upping the dosage to 50mg, but for me its more important to keep the dose low.

I'm enjoying all your great stories and information! thanks and good health to all -p

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