Hey guys,
luckily I'm not the person with ITP, it's my friend. I'm not looking for medical advice of any sort here.
She was diagnosed with ITP a few months ago, as her blood platelet count somehow hit 13 000. She has always had low platelets but was only recently diagnosed with ITP. She has at times had ITP symptoms such as easy bruising, bleeding from the gums, petacheia. (cant spell it lol)
She really does not want to be on long term prednisone, our other friend who has been on long term prednisone for Asthma agrees that it is the devil's drug, and she may opt for some thing else.
However, when her platelets were low, first her doctor recommended starting on 30 mg of prednisone and doing the tapering plan. Of course she was afraid of this for good reason, and first decided to self-medicate by using tiny sips of the liquid version of prednisone. She used probably 0.2 mg per day for about a week or so.
Strangely with this her levels slowly went up to 192 000 , but then after that they started drastically dropping again. Anyway, eventually she put herself on 5, and then 15 was the max. She said she really hated the side effects of the 15 mg.
she took the 5 and 2.5 for something like a week, then did the 15 mg for about 3 days and then 10 mg for one day.
Another doctor, in the same Dr's office, told her to go off the prednisone immediately and thought it was a really bad idea to take it.
Then, for days after taking the prednisone her blood platelet levels went up . To 200 000. Then, for a few days after, it went up and down, Down to 190, then 191, then 220. Today it is down to 160 000 .
She is really having a lot of panic and hypochondria about everything, which I'm sure many of us have been through on longecity.
What we are trying to find out is, if her blood levels drop to a very low level again, would it be possible to use prednisone intermittently, for example 15 mg for one day, and then see if it raises for the next few days? It seems all the docs say you need to taper for sure, yet with her immediately stopping the medication, her platelets kept going up days afterwards and there was no ill effect from suddenly stopping the prednisone.
Searching the internet we have not yet heard of a case of someone using prednisone infrequently such as once a week or something as needed. Mostly it always involves tapering.
We are wondering if any of you all have experience or know someone who has been able to get away with that kind of dosing. Basically she is freaking out about all the other risks of the treatment options too and thought it would be cool if she could get away with taking prednisone once in a while on an as needed basis because her immune system seems to react really well to it in that it boosts her blood platelets and they kept going up for days after the dosing.
of course there's that worry that there would be a sudden blood platelet drop or that we are playing with fire here. So far my advice has been to go along with what the doctor says- as the other doctor who recommended against prednisone was way nicer and empathetic, than the other guy who was basically an asshole as i hear. This doctor said not to worry and that she would take care of my friend and help her with any treatment and to trust her with everything as she will do the right thing to help when necessary.
I also recommended her to see if her work's medical coverage will help her cover private psychiatric care because she is panicking and weeping almost daily.
