Possible to come off prednisone?

Have many of you had success with treatment and then been able to come off of prednisone? I began this disease with a platelet count of 7, a platelet count on 70 mg of prednisone that hovered btwn 45 - 75, and now 3 rituxin infusions under my belt that raised my platelets to 134, and then they dropped to 110. When my platelets reached 134, they dropped my prednisone to 40 mg. At 110, they held my prednisone constant. I have my 4th and last rituxin infusion this wednesday. I have had a great attitude all along but am feeling a bit blue today. I have gained weight, I have a moon belly I never had and am trying to fit into summer clothes, and lately I have finally gotten the prednisone moon face - my eyes are so swollen in the morning. I don't want to do this anymore!! If the rituxin doesn't work, then the spleenectomy is in my future per my doctor. Right now, I would just like to rip it out and move on. Does anyone have any thoughts about whether I can rid myself of this awful prednisone for good? Thank you for any input! /Traci

It's not really a good idea to be on prednisone for too long. If it's at all possible then it should be limited to a few months use. If it doesn't work in that time and keep the count up when stopped then it's maybe time to try something else. I tried six different treatments before the seventh, Nplate finally worked. A splenectomy never was on my list of things to do.

You have a right to have a say in your treatment and if you don't want to do the prednisone any more, discuss it with your doctor. Don't stop it suddenly though as that can be very dangerous.

If the rituxan keeps your counts up, sure why not get off prednisone. As Ann says, it has to be gradual, a taper, not a sudden stop. I got off prednisone after rituxan worked for me. If you only take the pred for platelet reasons, you should be able to get off it.
Erica

I've never known of anyone with ITP to be on doses higher than 10 mg's forever. You will get off of it. It's rough, but hopefully Rituxan will kick in and hold the counts.

Do your research on treatments before you agree to ripping out your spleen. It's not as benign as it sounds.

Yeah, my platelets usually drop when I get to about 3 mgs of prednisone. Haven't been able to come off of the drug in the last 3 years... would love to be off of it though.

Prednisolone sucks and can cause more problems than the ITP itself:sick:

I am on my second dose this year and experiencing mini problems at night mainly. Today is the first time I think I felt tired in the last 3 weeks but end finding it hard to sleep my usual pattern. And mine is very very mild experience. Saturday night was the hardest so far. I lay on my left side and my heart scar operation from when I was just 9 months old... pulled.(thy put a band on the heart in those days before the main surgery and yep it was the scar I felt - very first time in my whole life I believe) Layed on my right side and I was experiencing my brain being some whirl related to a mini manic high. I did switch off in the end but yes I do appreciate what you are saying even if mine was very tiny experience inindeed but enough to question when should I ring the heamatology ward and say what is happening. But hasn't happend again and am relatively normal in the day time and though get up at 6 ish rather than 7.30 but that is normal for me when on steroids.

am on the things longer than I was in december..... and been given calcium tablets with it ...

seriously - stick with them if you can or at least speak to a nurse or doctor if you are struggling - they may be able to help.

but also determined to proove one can loose weight on them. I maintained last week at slimming world but done that before. The challenge is to loose and am excited as I think I have done but tomorrow will tell. Though am down from 60 to 30mg but there again, even if I have lost a lb it be the very first time for me to loose whilst on them at whatever dosage though maintained.....

I lost weight while I was on prednisone... I had to be very strict with what I ate and stayed away from sugars. Would only eat fruits and veggies when the feeling hit me.... I had to figure out the prednisone/weight thing.... I have been on it too long and I didn't want to gain back the weight I lost. Almost 70lbs....

I've had ITP for 22 years and about five years ago my count stopped responding to Prednisone. I'm kind of glad but it does lessen your options when having low counts.


Debbie