No wonder you're having such bad side effects--that's a high dose of Pred! I guess there are different thoughts on it, but many doctors would start you off at least half of what you did. I just think they have no idea what it's like to be on such high doses. It does seem extreme to me, especially as 25k, the lowest you reported, is still relatively safe. Unless you're having frank bleeding symptoms that can't be stopped, most doctors won't order treatment until you're at 20k, some even not until 10k or below. Simple bruising and petechiae (those little red dots), while not so pretty to look at, are not in of themselves, dangerous. You need to make it very clear to your doctor how badly this is affecting you. Remember, he works for you. Read a lot on here, and become your own advocate. If he seems too aggressive, you may want to get a second opinion.
As regards to the menstrual bleeding, it varies quite a bit. For some, it can be problematic, and the flow will be quite heavy. For others, it doesn't seem to make a difference. I know for my daughter who had ITP (she was 12 at diagnosis), even though she was nearly always between 3k and 10k, her periods never got heavier. However, it did seem her platelets would be at their lowest during her cycle--not dramatically lower, but lower.
Be aware, too, that one of the side effects of Prednisone is: "Hematologic side effects have included thrombocytopenia, lymphopenia, and platelet alterations resulting in thrombolic events" and "menstrual irregularities", and so can actually increase the risk of bleeding. One of the moms who used to post a lot on here, her young son was at 3k, but he wasn't having any overt bleeding symptoms. After being put on Pred for 4 days, he began bleeding like "a stuck pig, from every orifice", and his counts went down to zero, and stayed there for 3 months. Needless to say, though the doctor simply wanted to give him even more Pred, they refused any more, and instead sought out some more natural treatments.
One thing that might give you some relief from the side effects, I have posted in the Natural Treatments section at:
www.pdsa.org/forum/8-natural-treatment-methods/12854-how-to-attenuate-side-effects-to-medications.html It may sound a little strange at first, but give it a try. It will cost you nothing but a little water and your time, is completely safe snd easy to do. I used it twice last week, and both times it worked within minutes. One was a very pregnant woman who wanted to get things going. After looking on the internet, she went to an herb shop and bought some Black Kohosh. After taking it, she began feeling very anxious and ill, and very nauseated, though labor still had not begun after 5 days. Even so, she continued to feel ill.She was referred to me. The first thing I did was make up a "remedy" from a tiny pinch of the Black Kohosh, and give it to her. Both she and her husband were amazed how within 2 minutes of taking 1 teaspoon, all of those ill effects were gone!
A couple of days later I got a late night call from a young man who knew I was a homeopath. He grew up in Germany, and was raised on homeopathy, and had called me for some advice. At a party, one of his friends had taken some drugs to which he was reacting to, was in a totally psychotic state, very paranoid, very violent. I talked him through this same method, and within minutes, I could hear that the boy completely calmed down, and returned to normal.(He had been screaming and throwing things around!) The hardest part was getting him to take the remedy.
Anyway, just use the same method for the Prednisone. Since you're taking it everyday, you'll need to take a dose of the diluted Prednisone each day, also. Usually 15 to 60 minutes after your regular dose. Just keep the cup of water and cover it. Then, each day, dump it out and refill it a few times before taking a dose. Do not add anymore Prednisone pills, just use it like sourdough starter.
Let me know if you try it and how it works for you,
April
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