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Back on steroids

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13 years 8 months ago - 13 years 8 months ago #21428 by lauralie
Back on steroids was created by lauralie
Hi everyone,

I was diagnosed in April of 2011 and went on steroids for a few weeks and the seemed to do the trick. My platelet count went back up and maintained. In the last 2 months my count has been up and down though. Yesterday I had the mother of all nose bleeds that lasted 2 and a half hours, it was awful. I was back in the hospital today and my count is down to 26, so Im back on the steroids :( Does anyone have any tips for how to cope with them? I remember from last time that I had a huge appetite and found it really hard to sleep at night, and Im sure there were loads more!

Thanks :)
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13 years 8 months ago #21447 by barrelgal
Replied by barrelgal on topic Re: Back on steroids
There is a book availible called "Coping with Prednisone, Revised and Updated: (*and Other Cortisone-Related Medicines)" that was suggested to me. I was however not on steroids long enough to get the book, just long enough to suffer the side effects. Maybe that would help?
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13 years 8 months ago #21465 by lauralie
Replied by lauralie on topic Re: Back on steroids
thanks, may look into getting that book. i already am having trouble sleeping at night and its only been 2 days! the joys haha
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13 years 8 months ago #21467 by Ann
Replied by Ann on topic Re: Back on steroids
When are you taking the steroids? I was told to take it before 8am in order to enable sleeping at night.
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13 years 8 months ago #21470 by lauralie
Replied by lauralie on topic Re: Back on steroids
I take them at 7.30 in the morning because I read that it helps to take them early on in the day. I may try some hot chocolate before I sleep, see if it helps at all!
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13 years 8 months ago #21472 by Mark
Replied by Mark on topic Re: Back on steroids
Chocolate can contain caffeine and does contains the very closely related compound theobromine. I would try hot milk instead.

The amino acid tryptophan helps many people sleep and can be purchased over the counter and is thought to be the factor in milk and turkey that makes people drowsy. (Works for me)

And then there is always the over the counter drugs like Ambien (didnt work for me so well)
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13 years 8 months ago #21475 by lauralie
Replied by lauralie on topic Re: Back on steroids
thanks so much for the tips, will try get my hands on these if i cant sleep again tonight
  • karenr
  • Offline
  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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13 years 8 months ago #21567 by karenr
Replied by karenr on topic Re: Back on steroids
Lauralie, how big a dose of pred are you taking? When I'm on 15 mg or more, I often have to rely on Ambien, which my hema prescribes. That makes me less hyper, anyway.
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13 years 8 months ago #21611 by lauralie
Replied by lauralie on topic Re: Back on steroids
60 mg a day for another 8 days, then hopefully itl be tapered down
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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