doctor cutting down prednisone....

my count was 17 got on prednisone 75mg... ten days later 157. doctor said cut down to 50mg.
retest in two weeks. if all goes well he said after that we will taper off slower after that.

how does his plan sound?

Well, I think his dose cut was too much at once. 65 or 70 might have been better. It's best to see how your count responds to this before deciding on a taper plan.

i said maybe we should go slower he didn't want too.
we'll see what happens.

i'm going to get off this drug. the side effects scare the hell out of me. 3-6 months would be the best way to go faster and i may risk it not working but i'll take my chances. i want off this in two months.

John - which side effects scare you?

I know that getting off of it fast is tempting, but dropping counts is not the only problem. Going too fast can cause serious withdrawal symptoms. As bad as the side effects are at high doses, they can be even worse with a fast taper.

it's the skin thinning- i've googled the hell out of it, it can happen in what they call long term use- 3 or more months i think. and the thinning effect can even show up a year after you stop the drug- according to this dermatologist. i guy said his skin started thinning months after he had stopped taking the drug and he didn't even take it that long. everyone is different some people are fine others aren't. with my luck i'll get the worse case of skin thinning they have ever saw. i'd like to taper now as safe as possible even if the numbers dropped and try something else. problem is i'd need government help to pay for the other drugs and i don't think they or the doctor would be okay with me just saying i want you to pay for this drug cause i don't like the side effects of this cheaper one which by the way i don't have at this point and may not get.

John - I've been on this forum nearly every single day since 1998, no kidding. I have seen thousands of people come and go, most of them started the ITP journey on Prednisone. I have never, ever heard anyone complain about skin thinning. One woman once said that an older woman that she knew had thinning skin, but that woman had been on steroids for many, many years. I know that everyone is different, but like I said, I've been on it since 2006 and only started having the problem last year. I really don't even consider it my worst problem from the steroids. The worst thing that happens to me is that if my dogs scratch my arms, the skin tears and bleeds a bit. I put a band-aid on it and it heals in a few days. I'm hoping it will reverse once I taper down a bit...I'm trying.

Many people move on to other drugs after Prednisone....you're not alone there. I don't know what kind of insurance you have, but all you can do is see which treatments might be covered and make a decision based on that.

John, I agree with what Sandi has said. But as you know, prednisone has many troublesome side effects! I have thin bones from using it- I started with normal bone density and now have osteopenia. But that has been after about 4 years of on and off pred. Still it can make you feel crazy, hair loss, fat distribution, insomnia, anxiety, mood swings- I've had it all and more! Don't taper too fast. I always feel better when I get below 20mg, and then even better under 7.5mg

I was on Obama Care insurance for 2 years and it was great for treatments. I got Nplate, the most expensive drug without any problems. So good luck, it may be easier to move on to another treatment than you think. In my experience with insurance in the USA, if you taper off prednisone and your platelet counts do not stay up, you have failed that treatment. So you do not have to stay on it even if its cheap. Your insurance will likely allow you then to move on to something else. Prednisone is not a good maintenance drug, because even if you don't have permanent side effects now, you WILL have them if you stay on it long enough. Doctors know this so they usually want to get people off of prednisone after a few months. Promacta is a good drug for ITP. Its usually easier to get approved than Nplate because its a bit cheaper. Do your research and get the treatment that you think is best for YOU! Not just whats cheapest.

i'm in canada and have no job as of today. i think the government will pay for some of the cost of the other drugs - i'm looking into it.

John, I'm in Canada too.
I was diagnosed in 2004 and was on and off prednisone up until 2011 when I had Rituxan, which put me into remission. Every week for the first year, I was getting IVIG. It didn't help. I had a splenectomy in 2006 because I wanted off the pred. That didn't work either, and I had to go back on prednisone. I must have had every side effect known that time. I didn't have the thinning skin, tho. Never even gave that one a thought. My doctor and I decided that I wouldn't treat unless I was under a certain number. I didn't pay for any of my treatments, not even the Rituxan. Medicare covered it all.
You should be covered for most treatments if you have Medicare. Good luck.

well my count today was 123 down from 157. so that was 75mg for 10 days-157 then he cut it to 50mg been at that for 7 days (123) now.

he said stay at 50mg for another week we'll test again.

had a good talk with the doctor today. talked about other things to try basically he wants the spleen next
IVIG he said cost 8000 not sure who pays hospital or government but he didn't want to go there.
i'm seeing a dermatologist next week about skin thinning, she is very smart she will be able to tell me about chances, how long you have to be on it and at what dosage.

he said the only way in canada that the government will pay for revolade is you have to have tried 2 or 3 other things and they fail. i have to go back to my GP and make him send me to another hematologist.

John - talk to some other members here from Canada before you make any decisions and yes, get another Hemo. Any Hemo who wants the spleen after an initial steroid trial isn't up to speed as far as I'm concerned. I can understand not wanting to try IVIG because it's usually a very expensive temporary treatment, but there are quite a few other options.

John, if IVIG, Rituxan, and the TPO agonists (Promacta/Nplate) are problematic might take a look at Azathioprine / Imuran. User ' julia ' got a remission from it after 3 years. She too responded to steroids.

making a call to roche in the morning i think they will cover the rituxan if so that will be next for me.

John, where are you in Canada? I'm in NB. There aren't many of us here, but we sure are spread out.
My treatments consisted of prednisone, win-rho,(once) IVIG (a lot), splenectomy and then finally Rituxan. Haven't paid for any of it. If I had had to pay for the Rituxan, I wouldn't have been able to get it. If I can get treated here in NB, I'm pretty sure you should be covered. I agree, I think you need to get a new hema doctor.
Three of us here in Saint John got treated with Rituxan and I'm the only one it worked on.

cindy why the spleen out before the rituxan?


i'm in ontario. talked to the nurse about Rituxan and roche's patient assistance program. the doctor knows all about it. she said just because he didn't bring it up doesn't mean he doesn't know about it. well what's he hiding it for? because he is trying to move me to spleen. next week i will tell him no spleen -while i look for another doctor .

Back when I had my spleen out, I just wanted off the pred. Sandi was doing Rituxan when I joined the group, and a few years after my splenectomy, I brought it up to my doctor. I told him if he ever wanted to try it on his ITP patients, I would be a guinea pig for him. He said he would keep that in mind. In 2011, he told me he had gotten permission to try it on me and two others.