120mg of steriods!!!!

I was told back in Aug. that I had ITP. They wanted to take my spleen right away, but thanks to you guys we went for a 2nd opinion. The only thing is these high dose steriods are killing me! I am so puffy, and very uncomfortable!!!! My stomach sticks out so much it hurts! Has anyone else been on this dose? And if so for how long? She did taper me 2 weeks ago to 100mg. only to have my numbers drop. So she has kept me at the 100. Any advice? Also had 8 weeks of rituxin. So far not much has came out of that. Had 1 whinro which brought my count from 1 to 40. And with combo of steriods it stays between 40 and 50. BUT I dont know how long I can take these steriods!!!!!! PLEASE HELP!!!

Lorrie:

That is a very high dose and I can tell you now that I wouldn't be able to tolerate that. I don't see the point of staying on that dose if you are not experiencing a credible, sustained rise in counts. The side effects are not worth it.

I couldn't handle the 60mgs I was on to start with! I don't know how you are taking the 120. I'm with Sandi, if you're not seeing your counts rise, I would talk to the dr. about lowering the dose. Good luck; I hope you go lower soon.

120!?!! Wow, that's a lot! I was at 100mg for a month and I was miserable. From what I get of your post, 120 is keeping your counts up, but if you go down to even 100 they drop? It seems to me that a different treatment is in order! I just couldn't see taking 120mg a day for an extended period of time. Ugh!

Beware of the steroids......my husband had them ruin his hip and had a total replacement last February.

Maybe a gradual taper would keep you at safe levels. Most of us consider anything above 25K safe. (I know if I were at 50, my doc would reduce my dosage --gradually, but immediately!

The highest dose i have been on is 60mgs and i hated that, so i don't know how your dealing with that, i would be speaking to the doctor about reducing the dose or trying something else or if she is still not on board with you, get a second opinion. You shouldn't have to deal with that kind of dose for a long period of time even if it does keep your counts up at a respectable level.

Thanks everyone for the advice! I had my labs done yesterday and I am at 80. SOOOOOO I get to taper!! I cant wait to be off these steriods!

remember to do it gradually. Dont be on a hurry because a sudden drop may cause more complications

Be careful of the long term steroids. My husband had to have a hip replacement due to the high doeses of steroids he took for so long.............

Taper very, very slowly. The taper is worse than just being on steroids. I have been up to 1000mg in one case and 2000mg in another, and both times I wish I had tapered more slowly. The taper was 5x worse than before the taper. So, however slowly your doc wants to go, you may want to think about going slower.

Lorrie,
I know this is different circumstances because its actually my son who has ITP he's ten. He weighs about 60lbs and was on 100mgs/day of Pred. The pred alone did no good, the IVIG + pred didn't work, so they gave him cellcept (immunosuppressant) with the pred and had to double the dose of the cellcept but that has kept his numbers in a safe level...they do bloodwork every week and if his numbers are reasonable (last week down to 78, this week up to 86) then they wean him by 5mgs/week. He's now (as of today) on 25mg/day. He has the pred cheeks and has gained weight from the eating, but otherwise has seemed okay. I think also they should be looking at something maybe in conjunction with the pred or in place of. I was told a very slow wean was the safest way to go too.
This probably dosn't help but my son is just a wee dude, and he was on huge doses. He also had the pulse of pred and that was almost 800mg of pred at once, well over an hour, that made him REALLY uncomfortable.

You are kidding - a child age 10 & weighing 60 pounds was put on 100mg of prednisone??? I am flabbergasted - 10 years old and on 100mg of prednisone! I just cannot imagine that. What kind of doctor put him on that dose? Why?

Yes he was on that dose for 4 days...he couldn't tolerate the Methylpred, had a bad reaction. He also had a heart transplant when he was a baby, and thats how they treat rejection as well, with high dose steroids. He also had 250mg for two days, but that was when he was first dx.
He's down to 25mg as of today...but he's on bp meds now because of the pred, he's (and always has been) on Tacrolimus for his heart transplant and he was on the Cellcept up until two years ago, they took him off of it...when he was diagnosed with ITP they restarted the Cellcept (MMF) and then doubled the dose when it was found to not be working..they are tapering the pred in hopes that finally the dose of MMF has kicked in now and will take the place of the pred.
He was put on the pred by our hem doc in consult with transplant team..they agreed with it. Its working, it was the HUGE dose of Methylpred that scared the crap out of me...he's so slight too, just a wee guy. Hopefully now that his numbers have stayed between 58-100, they can lose the pred, the side effects are brutal.