Does this sound crazy or is it just me. The assistant to the neuro finally called back after a week of phone calls. They had me weaned down to 30mg a day and then to 30 mg every other day. When I went to every other day, I started feeling really bad, especially on the off day with weakness, fatigue, headache, muscle ache, etc. So the assistant to the neuro said go down to 15 every day. DOes this sound way to fast to anybody or am I just crazy?

thanks
kathie

Oh, wow, that doesn't sound good at all to me. So sorry.

In my opinion, the "every other day" part came too late. My neuro's office has patients go to every other day when they are at their highest dose, as soon as the symptoms become stable. That immediately cuts side effects in half, and makes the wean much easier. When done when the dosage is high and the patient is stable, it just works better.

You have been noting withdrawal type (and symptom re-emergence) since very early on in your wean. Since you have continued the fast wean, your body is really stressed from both the wean and the re-emerging symptoms in addition to the bad scene that happened with the IVIG. This potentially a recipe for disaster.

Are you happy with your neuro? Is this something you can talk to him/her about, or make an appt to go in and discuss? I will add that it's not unusual to feel cruddy for a few days following any reduction in pred, so if try and ride it out, it "may" get better (or may not.)

I hope you find some relief soon.

I am not happy with the neuro. I am on the wait list for a new neuro. I voiced my concerns with the assistant to the neuro about the dosage as well as the concern about what are we going to try next. The neuro was just going to let me ride out the steroid with no new treatment plan. They were going to send me to some sort pf specialist to try improve my quality of life. I said I prefer a new treatment plan to try for remission. They said they would get back to me on that.

I guess I will follow their instructions and see what happens.

thanks
kathie

So sorry this is happening to you Kathie. It really disturbs me when a doctor's office staff ignore calls. You can never be sure if the information gets to the doctor or not. I hope your new neuro is better. I am new to this disease so have not had some of the scary situations some of the rest of the group have. Just want you to know I am sending you healing energy and prayers. Hang in there :hug:

SANDY

weaning pred
 

WAY TOO FAST!!!

The highest dose I had was 30 mg/day. To wean, the neuro took me down to 25 for one month, then 23, then 21, then 20, one month at a time. Then 18 and 16, one month at a time, and told me to stop there. All of that was tolerable, with just a couple of days of not-quite-rightness. I went down to 15 after another month by my own judgment, then 13 after 2 months. I just want off this drug! But I paid for it with the last two decreases, with head to toe pain for a few days and feeling like I had the flu in general. My neuro didn't seem to pleased I had taken it on myself to do that, but I'm sick of prednisone. I'm now about a month since that decrease to 13, and no more ill effects and the MG is holding its own. Anyway, it seems to me that your decrease doses are extraordinarily far apart!

Kathie, 30 mg every other day or 15 every day, is about the same...your neuro assistant didn´t listen to you and didn´t dare to change anything his boss said...
If I were in your shoes, I would go back to 30 mg every day and read again the various posts sent to you about too quick Pred tapers. Personally, I would never cut more than 10 % at any step.
Good luck, keep us informed and the quicker you´ll see a decent neuro, the better you´ll be!
Maurice.