Your taper rate is far too fast, you should try no faster than 5mg a month and if you find you are sensitive you may have to slow that down. Prednisone while a strong med is hard to get off of and many have a tough time with symptoms while tapering and have to go very slowly.

Did your doctor want that rate of taper? You might want to work out a slower schedule with him or her. It takes our bodies a while to resume the adrenal function.

Best of wishes.

Joe

Sorry you are having trouble with prednisone tapering. There are at least two parts you have to worry about--

--MG coming back from lowering the prednisone (or other prednisone suppressed conditions showing up too).

--Adrenal insufficiency when your prednisone gets too low. However,
you probably won't see that unless you are below 20 mg per day as the adrenals don't really need to do anything until you get pretty low on prednisone.

It would seem improbably that your problems were from adrenal insufficiency while at 40 mg per day as the adrenals would still have no need to function.

My neuro insisted that alternate day tapering with a goal of reducing the alternate day to zero was better than trying to reduce the every day dose. I was able to do that. If you try to taper prednisone and you get the symptoms you got, probably MG problems instead.

Good Luck

I was interested in your question, and googling adrenal booster pointed me in the direction of a lot of people who wanted to sell me products and to discussions on adrenal fatigue. It seems your best bet is to taper cautiously and maintain overall health through nutrition, sleep, and when possible exercise. Is your MG under control? Be well. :)

Agree that your taper rate is much too fast.
Unless there is some doctor directed, medical urgency to do so.

I reduced from 60mg to 20mg, 5mg a month, as Joe mentioned.
Even at that slower pace, I still had problems.
There were even a few weeks, when I had to bump back up 5mg, for a few days.

Hope you are feeling better.
Ross

Hi Annie, I have to agree with Joe. I was told to decress prednisone slowly at 5 mg per month also. All the best to you, Charlie

Slow tapering of prednisone is certainly critical when you get down in the lower levels (i.e. below 20 or so), but changing from 60 to 50 or 40 is not likely to cause the problems you saw from the tapering itself (i.e. prednisone withdrawal), but rather from the return of MG.

The goal with prednisone is:
-- get MG under control (wipe out the MG symptoms) by taking high doses early on to heavily suppress the immune system from producing the bad antibodies
-- start reducing the prednisone to the lowest effective level (which tries to balance some mild MG symptoms with some immune system and some prednisone side effects).

The tapering in the 60 - 20 range is done slowly to recognize when MG symptoms return so you can stop the taper (or bump the dose up a little) to try to figure out the minimum effective dose. It is not done slowly because of adrenal problems or prednisone withdrawal problems --but to know when MG returns.

The purpose of reducing the prednisone is to regain some immune system and to get rid of side effects that prednisone causes that are harmful or problematic. When you get down to the 20 mg per day and attempt to go lower, then your adrenals need to kick in with natural cortisol to allow you to feel OK. This takes time and generally is somewhat painful unless you go very slowly.

My own experience with adrenal insufficiency was that my muscles and joints ached a lot but it was totally different than MG coming back--and aspirin or other pain killers were effective with those symptoms (I tapered from 30 to 0 in about 2 months by skipping one day, then 2 days then 3 days etc between the 30 mg doses). However, it turned out that I was in an MG remission where the MG symptoms didn't come back and all I was really doing was getting off of prednisone and restarting the adrenals.

A reasonably readable account is at http://www.myasthenia.org.au/html/treatments.htm

"When prednisone is taken in doses higher than 20 milligrams daily for longer than a week, the body's natural production of adrenal hormones begins to decrease. This is called "adrenal suppression," and is an undesirable but inevitable effect of taking high doses of a synthetic steroid. Once this occurs, prednisone cannot be stopped all at once but must be slowly tapered down over several months to give the adrenal glands a chance to "wake up" and begin producing natural adrenal hormones again.

Prednisone has a great many potential undesirable effects, usually related to dose and duration of drug use. In order to lessen the chance of undesirable effects, a gradual transition to alternate-day therapy is made after about two months of daily therapy, so that eventually twice the usual dose is given every other day for several more months. As soon as is feasible (3 to 12 months), the drug is very slowly tapered over many months to a long-term maintenance dosage (around 5 to 10 milligrams every other day) sufficient enough to keep myasthenic symptoms at bay. The choice of prednisone therapy is thus a long-term commitment lasting several years.

30% of myasthenics on high-dose prednisone therapy experience a drug-dependent symptom-free remission, and another 50% obtain marked improvement. However, 25% of patients also experience serious complications from this drug."
Good Luck

As much as I appreciate my neuro - he keeps wanting me to taper to fast on the prednisone. I have had to ask him three times/different tapers /to agree to my request to go way slower. He always does. You know how you feel; I hope you have a neuro who listens to you.
Even 2.5 mg drop is too much for me right now. I am on 12.5. Yesterday his nurse called in a perscription for me for 1 mg of prednisone. My plan is to go 1/2 mg first and see if it is easier. Sometimes it was hard for me to tell if it was the MG or the tapering that made me EXTRA sleepy or mg symptoms were flaring. I did learn that I need to take more mestinon (my neuro lets me adjust my dose). Good luck to you, Annie. Stick close to this group. I can't even count how many times someone has helped me in so many ways. (tears) Good Luck. Barbel

Adrenal booster put me on respirator


WE DO NOT WANT ADRENAL BOOSTER

Russ, I cannot begin to thank you. Your responses were both so informative.
Joe, My doctor did recommend the fast taper because I was doing so fantastic and being so young (16) I think he wanted to get me off steroids as soon as possible. However this time around we are going for a slower taper because I responded so poorly with the first taper.
Elinora, my mg is managed in that I am not having breathing or swallowing problems that would land me in the hospital. However I still experience almost all of my symptoms of generalized mg everyday so although the steroids have helped tremendously, they haven't gotten me anywhere near being symptom free.
Thanks for all the answers!

Hi Annie~
I'm so sorry that you are having such difficulty with your taper.
I have just tapered from 20 mg to 0 and it took me from April until one week ago. I had to do it on a 2.5 mg basis per month. Every time I went down by 5 mg per month I couldn't stay awake during the day. I would come home from work and fall asleep before dinner and then not wake up until the alarm went off in the morning. I never even changed out of my scrubs after work. I was completely useless at that rate of taper. I started out taking 4 tablets of the 5 mg prednisone. Then I went down to 3 3/4 tablets for two weeks and then 31/2 tablets for two weeks, then 3 1/4 and so on. Now I'm completely off of it. (YAY!) Now I'm just waiting for the moon face to go away.

I don't know if your doctor feels that is too slow but you might want to ask your Neuro if it's possible to slow it down.

Good luck to you. Please keep us posted.
Aloha,
Angie

Russ, that was very good info.

I am still not sure how Prednisone works for autoimmune. Imuran and CellCept do something with the bone marrow production of antibodies, right? But how does shrinking the adrenal glans do anything?

Adrenal suppression is a side effect of prednisone. Adrenals produce cortisol to maintain a set level. Prednisone supplies this so the adrenals stop making it and only restart grudgingly when pred is decreased below 20 mg or so ;-).
Details. http://m.australianprescriber.com/magazine/22/1/9/11

That's why we are steroid junkies.

I am still looking into how steroids control immune function. I think CellCept and Imuran work on antibodies created (like all blood cells) by the bone marrow. I think the antibodies are created by the white blood cells.

I have been reading about this stuff pretty much every night (it kinda puts me to sleep :) ).

Perhaps there is another chemical released by the adrenal glands that regulates the immune system, and since the steroid shrink the glands that chemical is reduced too?

Either way, it works, and there are some people who can control their MG with Prednisone only. Imuran and CellCept help us spare (sparing) the Prednisone, so perhaps we need less of it. Hopefully we have fewer side effects this way. Some people on this forum get away with just these other two drugs.

Anyway, Russ and Ross, you both have filled in sooo much info that the doctors don't explain. Thanks.

Annie, this was a good topic. You and I are both hopeful that CellCept will help us out too.