Hi Carole,
Sounds pretty standard and is what I did my first stint on Pred. There is plenty of info on the net on tapering off prednisone just google it. The studies show symptoms are likely to return without additional immune suppressive therapy, i.e. cellcept / immuran or the like. I have bad side affects with pred so I only go on when my MG gets real bad and taper off, just do the mestinon.
Best of luck and feel better.
Al

Thanks, Al

The drop needs to be 50 per cent in 6 months. I found the slower the better. The withdrawal can be nasty...so if it is too bad....just go slower.
So if you are at 60 you would be at 30 in 6 months.
I tried to go faster once...I was .miserable...wasn't worth it.

Thanks Ann,
I was at 50mg, so by 3 months I should be down to 20mg. Then I see the specilist again and if all goes well I will drop by 2.5 and see how that goes. Maybe that is a little fast. I plan on seeing how it goes, if any problems I think I would do it every 4 weeks instead of 2, I thought it was pushing it at every 2 weeks. Thanks for you imput!! Do you still take any Prednisone??

Carole

according to the 50 percent in 6 months it would take you 6 months to be at 25.
Good luck

Hi Carole,

I am tapering at the moment from 75 in June to 15 now. I have found the last few weeks the hardest. I agree the slower the better!

Good luck. Gez

Ps I have learnt from others that if a drop doesn't suit your body then then you can always go back up a little bit and then try again when you are up to it. I haven't felt I needed to do that yet but will keep it in mind.

Thanks, any information I can get is helpful!

My neurologist thinks that alternate day prednisone is a better way to take it than every day doses. The alternate day dose is supposed to give the adrenal glands (suppressed by prednisone) a better chance to be somewhat more active, and the side effects are supposed to be less. She would rather have me on 30mg every other day than 15 each day (although some folks have difficulty on the off day). I am currently at 30/0 for about the last week, having tapered from 30/5 at two weeks.
She says, tapering more (from the 30/0 level)should be no larger than 2.5 mg steps with at least a few weeks at each step. She also suggested that instead of tapering my alternate day 30/0 I might want to try 30/0/0 (every third day) as an experiment--a larger dose every few days for those who can handle it seems to have less side effects than the daily or every other day dose. That is the idea with some of the very large weekly dose treatments that are tried.

I am also tapering, but not so slowly. I was told to cut back by five mg each weak. Having some muscle pain, but I don't know if that is from the tapering. I just hope I can get off the prednisone because I really don't feel any better on it than before I started it.

Hi Carole,
I am doing the alternate-day taper as well. I went from 60 mg/day to 60 every other day in 6 weeks (so that's 10mg less every other day per week). And now he has slowed my down to decreasing by 10mg every other day, every two weeks. Now I'm on 50 mg every other day and I haven't had any problems, even though I know I"m tapering faster than some people do. I get IVIG once a month, which knocks out my symptoms, and I'm also taking Imuran but I just started so it hasn't gone into effect yet.

Well, I do sometimes wake up feeling a little hungover, but it's a pretty mild feeling that goes away soon after I get up. And we'll see how I feel when my dose is even lower, but hopefully between the IVIG and...I don't know, magic? my symptoms won't become bad again!

But if you do start feeling your symptoms increasing, best to call your doc and let them know so it can be taken care of before it escalates!

Thanks, Vieve!!

Question: So ya'll know how the Doc's say "it gets worse before it gets better"? Does that apply when tapering down off of Prednisone?

It can, so far I am not having any bad side effects. I am down from 50mg per day to 40mg per day. Next week I go down 5mg more per day!!

Thanks for the post Carole.

Completely getting off of Prednisone is one of the most difficult things many people with MG face. In fact, I rarely hear from people that are able to get off of it. Especially without adding a steroid sparing agent.

I want all of you off the prednisone, and I wish you the best.

The experiences on this thread should be helpful to many.

Best wishes for peace,
T

Getting off prednisone has been the most difficult thing so far. I got the worst part going down from 10 to 5 mg, I haven't been able to move on because of my symptoms. I started on 5mg every other day and after 2 weeks is finally working, we'll try to do the same with 2.mg in two weeks.

Good luck!