Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I was on prednisone for a couple months at 60 mg a day to get my newly diagnosed MG under control. In January I was also put on cellcept, and in February I started tapering the prednisone on a high low schedule. I am currently at 60 mg every other day, and my next step is 50 mg every other day. Other than a huge appetite and slight ocular weakness, I seem to be tolerating the taper pretty well. In fact, I believe I feel better on the days I don't take any prednisone. I am wondering if this is normal?
Also, the prednisone makes my blood sugar spike on the days I take it. My understanding is this is common. I am wondering if that is why I feel better on the non-prednisone days? I am trying to control my carbs even more on those days, but it is difficult when all I want to do is eat......lol
Also, the prednisone makes my blood sugar spike on the days I take it. My understanding is this is common. I am wondering if that is why I feel better on the non-prednisone days? I am trying to control my carbs even more on those days, but it is difficult when all I want to do is eat......lol
Prednisone itself causes many problems in our bodies. When you take a dose, it actually goes into our bodies in a few hours and clears out before 24 hours ( source http://mentalhealthdaily.com/2015/10/31/how-long-does-prednisone-stay-in-your-system-after-stopping/ )
So on the second day when you skip prednisone, you have essentially none in circulation and so for that day you don't have the problems related to prednisone side effects, and probably do feel better from that.
I did my taper from 60 down to 40 over two months and then switched to alternate day use at 30 and kept at that for a month or more. My neuro suggested I try every 3rd day prednisone at 30 as an alternative way to taper the amount and that worked and eventually I did every 4th day, every 5th day and then dropped to 20 etc., and finally got off of it totally and found I was in a full MG (drug free) remission in which I remain now for 3 years as of April 1.
However, the daily effects of prednisone dosages are one thing, and the longer term immune system effects another.
We are using prednisone to stop or dampen the immune system from producing bad antibodies. As we taper off of it, we have to see if the immune system begins producing the bad ones again and whether MG symptoms return as the antibodies attack us.
Now that is a slow process to find out, because with prednisone our neuromuscular junction has been allowed to grow back to normal connections, and so for MG to return, the antibody level has to build up again and gradually destroy or block receptors and then MG starts to return. That is why we taper slowly trying to find exactly the point where we are getting MG symptoms. If we go too fast, we may overshoot, and MG can come back strongly and we won't have figured out the minimum and have to go back to high doses to get control and try again.
Many folks say that they can control their symptoms long term with about 10-15 mg of prednisone and so we might hope that our own minimum dose would be about that level. However, it may be 25 and if you dropped by that level too quickly you wouldn't have recognized it.
I haven't a good source for this, but it appears from my readings that prednisone immune system suppression can last from a few weeks to a few months after stopping prednisone completely. So if you stopped it today (you would have some major withdrawal symptoms as well as life threatening adrenal crisis within a few days--so don't try stopping it without a very gradual taper down) your immune system may not make new bad antibodies for weeks to months and then they would have to block and destroy the receptors and so only then would you know if MG was really back. So you might have a few months to actually know what a particular level of prednisone did for you.
Finally when one does get down to the 15 or less level, then our adrenal glands, which have been turned off by the prednisone, start to wake up (or should start to wake up) and if we drop too fast at the low doses we run into adrenal insufficiency or crisis symptoms.
There are many variations on prednisone tapering and you and your neuro can talk over the advantages and disadvantages of each. My neuro suggested I try the every other, every 3rd, every 4th day taper (several weeks at each level) and for me that left me with more good (non-prednisone) days and less of the prednisone side effects.
One of our members (Elinor) actually took a very high dose once per week as her treatment (methylprednisone -- or something like that -- a shot).
Good luck and be careful
Russ
Another set of side effects are the short term immediate effects of the prednisone in circulation after taking the pill including blood sugar, blood pressure, difficulty sleeping, mental confusion -- or whatever you experience on the days you take it and go away on the days you skip it. That was why I liked the taper of skipping days rather than reducing daily dose. Skipping days was also thought to be more likely to reawaken the adrenals as they were stimulated to start producing their own hormones when prednisone was out of the system for a day or two.
I have a video on my phone showing when they did the Tensilon test last december. I compare how I looked and the symptoms I had then to now. Basically, I tire a little easier now (and I think the prednisone is also a factor here) and I wear wrap around solar glasses in the car most days because I am still sensitive to light.