Magic Number for Prednisone Treatment?

In April 2015,during a routine physical my platelet count was 2000.Bruises yes, no other symptoms. Went to ER for platelet infusion and 2 day infusion of big dose of IVIG. Numbers go down-I go on prednisone-usually 60-70 mg/day and taper off at 5. This scenario repeats itself. Sometimes I am off prednisone 150 days, 83 days, I never know when my counts will go down-8,000 or 17,000 ,2,000 have been the lowest. Never symptoms unless at 2,000.Last time I was off prednisone 21 days. What do you think about a "magic number"? I have been thinking about if my count gets to 120,000, to ask to go on prednisone. My counts at the highest have dropped 20,000 a day! SO I go for CBC weekly.At 20,000 a day in a week I would be at ZERO.This of course makes me nervous when my numbers start going down. Isn't it better to use the prednisone to prevent having to have infusions? I tried a 4 day stint of Dex it didn't work plus made me feel sick.We are leaning towards me having CVID since my IGGs,M's and A's are low and my sister has been diagnosed with it-although she doesn't have the platelet problem.Thanks-I tried to be brief!

Hi Sadie,

Platelet transfusions for ITP are very short-lasting, as your immune system gobbles up foreign platelets even faster than your own. Protocol is for them only to be used when there is actual bleeding that needs to be treated urgently.

Many people set a threshold below which they start treating, but usually at 30,000, 20,000,10,000 or even 5,000. 120,000 is a normal count, and I have never heard of treating at that level. One approach is not to treat until bleeding gums, nosebleeds or other actual bleeding symptoms appear, not just bruising or petechiae.

Since you know you don't have bleeding symptoms even at 2,000, why not try your idea of using prednisone at some lower level, like 30,000, without using IVIG unless platelets drop much lower (maybe 2,000?) or unless bleeding symptoms appear, and see how your immune system responds? Then adjust your threshold up or down based on your unique response?

Thank you for the suggestions. I plan to talk to my doctor-she is pretty easy to work with. I hate to get too low for fear of severe bleeding.Fear fear fear- although this forum has helped me relax a lot.If I am 50,000 on Fri-by Monday I will be -10,000 so I am trying to find a better number. Thanks again!

My wife has ITP. The more I read and the more time I spend on this board, the less I fear losing my wife to bleeding, and the more I fear the side effects of the various treatments.

When my wife was having hip surgery, the man in the next room was also having surgery, to replace his hips that had been destroyed by avascular necrosis caused by taking too much steroids to treat an injury. I am not trying to scare you from taking steroids, I am only trying to impress on you the importance of balancing one risk against the other. There are NO medical treatments for ITP that are risk free. Fortunately, you have no symptoms until 2,000 and then only bruising!

Sadie

This link might be helpful. It's written by ITP specialist nurses for nurses who know nothing about ITP. It isn't very technical and might answer a few of your questions.

Anne

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Hi there


You may want to look at the whole picture and not just numbers. So symptoms, numbers, How you feel when your low? What your job is? Side effects of the medication, short and long term complications.


Most importantly stop letting them give you platelets. Focus on treating not trying to replacing them. Maybe if your not triggering your immune system you won't drop so fast? just a thought. I have watched people over the years and noticed those who get platelets given tend to have more troubles stabilizing.

That said if your bleeding internally or need surgery than platelets are probably in order.


PS: look back on your story. Your count was what at diagnosis?? Your diagnosis came because of a routine physical correct? were you getting the physical because of concerns? If not then I say add that to your decision making process.