Hello all - another newbie here

Theoretically, a person could stop at 30 mg's and survive the taper. I don't believe in stopping like that for two reasons: 1) it could cause worse withdrawal and 2) it could cause counts to crash, then you have to start all over. Why risk it and what's the rush?

Thanks everyone.

One thing I am quickly learning is how unique and different each case is.

I have nothing against my doctor (I like him well enough), however, I must say being only a few weeks into this, I trust the info from all of you on this board more than I do him. (that sounds pretty bad doesn't it?) All of you have lived it, and I appreciate your input because it's helping me to better arm myself to be my own advocate.

I still have a week to decide if I want to challenge him on a slower taper, so if anyone else has any thoughts I would love to hear them.

Thanks!

kimm,

When you went from 40 to 20 how did you feel?

kimm,

When you went from 40 to 20 how did you feel?

Well, yesterday was the first day at 20, and mostly just tired and a bit of a headache.
(nothing too extreme, that was pretty much what happened when I went from 60 to 40 also, it lasted about 3 days).

Its the drop from 20 to 0 that has me really concerned, both with side effects and count crashing.

Then don't do it.

I just took it upon myself to drop it slower. I didn't even tell the doctor (of course, I don't want you to do this just because I did it--I'm not the doctor). I kept cutting the pills in half (and even 1/4 at times). In the end, it did work and I never did crash--at least for the next 4 years. I also kept a journel of what I was taking.

That's what I did too DeeDee Marie - slowed it down on my own. After being on it almost 4 years and having the last couple of years be low [think 2.5mg, too lazy to go find the records] - I was scared to death if I just stopped, as my hematologist said, I would crash again and at that time I knew of no other treatment but prednisone and splenctomy. That 2.5mg probably wasn't doing anything, but my head told me it was - so when we moved back from overseas and my hematologist said to just stop taking it I couldn't, just couldn't. I went down .5 every couple of weeks until I was off it - the slowest taper from 2.5mg anyone has probably taken! But in my head it was what I needed to do - didn't have normal counts but also didn't have to treat for about 9 years either.

Melinda, that worked out really good for you. Sometimes, we have to be our own advocate. Not having to treat for 9 years is really great, especially from the presdnisone. The doctor told me I had a 70% chance of having normal platelets for "5" years--if I make it to one year from my last treatment (this is coming from Dr. Liebman). I'm trying to do things a little different this time around--taking it a little more easy than before:)

Dee Dee

Kimm,
I did pretty much what Melinda and DeeDee Marie did, not quiet as slow as Melinda but if I get the same result as her I will be one happy camper.

I went from 75 to 50 then by 5 mg a fortnight until I got to 15(I think) then I went to 12.5 then to 10. From 10 I only dropped by 1mg a fortnight until I got to 2, then stopped.

I think you can see a pattern here that tends to me a slow taper, maybe if someone has had a fast taper they might chime in and say how it worked for them.

I don't think I would be brave enough to get to 20 and just stop.

When I was tapering off higher doses of Prednisone I went down 20mg til 20mg then it was 5mg til 5mg then 2.5mg til I was completely off of it. Do not remember the length of each taper though. I think it might be safer for you to taper as I did and see how it goes. Everytime I tapered counts dropped so Prednisone is not an option for me any longer.
Good Luck!!

Hi Kimm!

I haven't been in this forum for a very long time...but I'm glad you found it.

The 'recommended' taper amount is 10% a week. I had to be tapered slow because my counts dropped with the decrease in prednisone every time. I would do a lot of alternate day dosing and that seemed to work with me. Sometimes I would only taper 1/4mg a week.

I would get SEVERE bone pain that would wake me EARLY (2am) in the morning...and would keep me up the rest of the day. Darvocet worked for me - but, that's not even on the market any more! Of course, I don't need it now either

I was on prednisone for over 7 years. I developed osteoporosis because of it, so I certainly hope that your doctor instructed you to take a good calcium supplement that includes vitamin D!!! If you can, get some exercise in as well!! I found out at age 34 that I had it...and even though I was taking calcium, I didn't take vitamin D - and no one told me to either.

I read a great book called "Coping With Prednisone" (title is actually longer but I can't remember it). It talks about the weight thing, moon face, etc. One thing it says is to avoid sodium and sugar...that will help with the water retention that causes it.

Good luck to you, Kimm!

Thanks everyone, I really appreciate the input!!!!