Has anyone here had severe steroid withdrawal symptoms? And if so, what did you do for it?

I am having severe headaches, muscle aches, joint pain, stomach ache, diarrhea, equilibrium problems, rapid heart beat, weakness and extreme fatigue. I am having a hard time coping with it. i am sure some of this is return of MG, but the more weaning off prednisone, the worse I get.

thanks,
kathie

At what rate are you withdrawing?
Mike

I was down to 30mg every day, and then for the last month he had me on 30 mg every other day. I am suppose to start 20 mg every other day on Sunday, but I am afraid how much worse I will get. I have called the neuro for 3 days straight, but he never returned the call. I have a new neuro, but the initial appointment is not until October. And of course the GP won't touch anything MG related and defers to the neuro. It is a sad state.

Also, how long were you on it? And what was the dose?

I was on 40 mg for a month, then 35 for a month and then 30 another month and then down to 25mg. WHen i got to 25, the MG got bad and then put me back to 30 for a month and then tried to wean again. So all toll, about 5 months.

Fever is 101, usually 97 (hypothyroid). Resting heart rate 125. Lungs are tight breathing in. Has anyone had to go the ER for steroid withdrawal and at what point did you make that descision?

I am beginning to believe some of my IVIG reaction may have been steroid withdrawal. I am having a lot of the same symptoms. It feels like a really bad flu.

thanks
kathie

Hi Cait,
I think the tapering scheme you follow is too rapid, didnīt you say your problems started when you changed to 25 mg every day from 30 every day? And now, you are on 30 every other day...!
Normally one should try something between the last levels (30 was ok and 25 was not), thus 27.5 by taking one day 30mg and the following day 25 until you get stabilized. After that, 30 mg one day and 20 the following day, and so on...
I donīt understand how neuros prescribe such high weaning off rate for people who have been on Pred for several months and at rather high doses...
Good luck to you!
Maurice.

I agree with Maurice. A slower taper might be best. Prednisone is a wicked drug. When I was on high dose (60mg) it made my leg muscles so weak I could barely walk. My neuro-muscular Dr saw this and started tapering me right away. I have been on as high as 80mg which solved my double vision which has never returned.
Mike

I think you likely have an infection along with possible steroid withdrawal. The taper is too fast, as you are not supposed to continue reducing when there are newly activated MG symptoms, unless you are withdrawing for a different reason.

I would think you need to go to ER, but avoid just announcing that you have steroid withdrawal. Instead, explain your symptoms and let them try and figure it out and if needed bring up the steroids (although that will probably get put in as part of the questioning).

Take care.

It sounds like you are going down too fast. The doctor really needs to talk to you. I am glad you are replacing him.