Prednisolon - should I take it?

Hi!

This week my nose bled tree times, but it was not difficult to stop the bleeding - it took me 15min. I do have some petechiae and purpura at my legs, but not so much that it looks dangerous. After taking a blood test, my platelets were measured 18. They didn't want me do go home without giving me anything, so they gave me Prednisolone (20mg)... and I'm really sceptic on those pills! Every part of me say that that's not the right way to go with my ITP. HOW sure are they that what I have is ITP? And what is ITP? They acually don't know. But... if this is an immune-system-out-of-balance thing, why is the right thing to do eating Prednisolone and do the immunesystem weaker. Isn't the point that my immune system have to figure out this probleme on it's own, for the best result. What if I got a virus inside my body... then Prednisolone would make things worse. I have read that after ending the treatment with Predninsolone, the platelet level can decrease even futher than it was before treatment (source: www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_Treatments.html ).
I do know that I need treatment if my levels are too low - but I 18 isn't that bad! If I get worse after ending the treatment, it isn't worth it! I feel there is too risky to take this medicine, and I'd rather wait some days and see if my platelets increase by themselfes.

... but I really don't know. What should I do?

As unpleasant as prednisolone is, it's the first point of call for ITP and many other autoimmune conditions. What is it that makes you think it's not ITP? At it's most basic, we all have thrombocytopenia - a reduced platelet count. Now what causes that can be only one of a few things:

a reduced production of platelets in the bone marrow (typically associated with leukemia, kidney failure, excessive alcohol consumption)
or
a higher rate of removal from the bloodstream (excessive blood loss, immune system munching them etc)

Now there are various other permeatations, so have a look at this website: www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm

Have you ever taken prednisolone before? If you're on it, they'll monitor you closely. They put me on 60mg when i was diagnosed (also with a count of 18) and within a week I'd gone up to 161 and then 2 weeks later up to 361. As they tapered me off, the count did drop, but most importantly when prednisolone works, it often works quickly, taking you out of the danger zone. While most of us muddle along at counts that would have A&E doctors trying to bundle us up in cotton wool, 18 isn't a great count. If you got hit by a bus tomorrow, if you were fortunate enough to survive, they wouldn't let you have surgery without a platelet transfusion if your count was below 50. You'd just start bleeding and not stop. I'm at 32 so I'm doing my best to get it back up! With the exception of Christmas (a glass of wine and a bowl of tiramisu) i've not drunk any alcohol since May of last year.

If you're not already being seen by a haematologist, then you should find one - they'll be able to answer questions much better than your GP.

Your concern and hesitation is not surprising. It seems you've just had your first encounter with a rare disorder and scary diagnosis. Your note doesn't indicate any "history" with bleeding and thus is seems likely you've encountered this Diagnosis (Dx)as most of us have - suddenly and unexpectedly. ITP doesn't come with a lot of warnings. We feel fine but some event leads to this "out of the blue" Dx. Mine for example was a routine annual physical where the blood test had a low platelet count - a retest the next morning and the rest as you might say was quickly downhill (hospitalized within 24 hours with a count of 3).

Steroids are the widely accepted first course of treatment (Rx). 20mg is a fairly low dose. I'm not as knowledgeable as others here but seems the typical dose is much higher (1mg/kg) with a 3-6 month taper (reduction around 5mg/week). Thus your dose of 20mg is low and seems intended to achieve a quick platelet lift. HOWEVER, pred doesn't work with everyone (me for example), but works great for some. The nature of ITP is that no single drug works for everyone, nor does a drug work the same for everyone. I have been unresponsive (refractory - medical jargon for unresponsive) to several Rx.

However it seems to early to know if you truly have ITP. ITP is a Dx of elimination - after eliminating all other identifiable causes (there's no test to specifically identify ITP). Experiences on this site have numerous scenarios when a GP over reacts proposes Rx plans that scare the devil out of us which is why you'll need to find a good hematologist who has experience with ITP.

I rarely offer advise as ITP is scary and believe strongly only the individual can make such personal decisions. However I'll say that I don't think a 20mg dose is high enough to warrant great worry about severely impacting your immune system. Your MD will likely want a CBC blood test within a few days to determine if your platelets are climbing. If yes, then you've gained time to learn and decide on a ongoing Rx plan. If it falls there are several tests and treatments.

I suggest you use this site to expand your knowledge of ITP (even though it's early to claim it is ITP) as it'll be in your vocabulary for a while as you work through the Dx process. I also encourage you to post EVERY question you have here. You've found a wonderful and compassionate family with deep ITP experiences to share. No question is ignored or considered foolish. If you do have chronic ITP we'll help you understand and expand your knowledge. BUT know this - many people here have lived long lives with ITP so it's likely someone has a close match to your developing experience.

Froken:

You got some great advice already! 20 mg's is a fairly low dose for ITP and Steve is right, it wouldn't impact your immune system much. The side effects won't be nearly as bad as a higher dose.

To put it simply, ITP is the result of an over-active immune system, so using immunosuppressants is usually the first step. If only our immune systems could figure things out on their own! We'd all be healthy. That works with normal illnesses, but not so much with autoimmune disorders.

Froken, you were on WinRho (Anti-D) before, weren't you? Wasn't that quite successful in keeping up your platelets? Why did the doc not treat you again with Anti-D?

People usually say terrible things about prednisone, but some of us have tolerated it well and have had few negative side-effects (so far!). Starting you with 20 mg sounds quite moderate.