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...
Problems that can occur:
-- MG symptoms may come back rather quickly (likely in a few weeks or less). Prednisone has stopped your body from producing bad antibodies and if you drop it too much, the antibody level may rise causing MG symptoms. Prednisone's effect is quick to initiate (at high doses) and quick to disappear, unlike cellcept or azathioprine some of the alternative drugs.
--Prednisone itself has side effects. Dropping it rapidly can cause these to show up. The symptoms can be found on many websites by searching for prednisone withdrawal myasthenia. They are not MG and not adrenal but likely some physical and some mental.
and if you are dropping below 15mg or maybe 20mg another problem
--Prednisone inhibits our adrenal glands from producing cortisol as prednisone provides it instead. When prednisone is dropped below 20 (or maybe 15 mg per day), then the adrenal glands must start kicking back in to produce cortisol, something they are reluctant to do and without cortisol, we get lots of aches and pains that are related to the low cortisol level (not MG type symptom). But that is pretty much limited to dropping below 15 mg per day and doesn't have any effect at 20mg. When you drop below 20, really go slow!
Most of us have gone through tapering prednisone and like the slow and steady taper. However, I did find changing from 60 to 40 abruptly worked OK and mostly just let me sleep again (high doses seem to make some of us feel "wired.")
A lot of advice is given on alternate day prednisone. So tapering can be 40 one day and 20 the next and gradually going to only a dose every other day. Each person seems to react differently.
Doctors are always trying to get us to taper our prednisone use to the minimum effective dose (which of course varies by person). Since the changes in MG symptoms can take a few weeks to show up, this time delay makes things difficult to figure out for the patient. When we think the prednisone is working, the doctor wants us to try a little less -- prednisone long term is best taken at the lowest level we can get by.
When you get something you are unsure of, like a 20mg drop, you really need to ask your doctor to explain why, and what can you expect might happen with this.
I think you can find a great deal of information about tapering on this discussion group by doing a site search type the following line into the google search box and you will get previous discussions about this.
myasthenia prednisone taper site:www.dailystrength.org
There is one or two thoughts I'd like to add in regards to high doses and 20 - 30 mg drops. There was a period of time I suffered from cluster headaches aka " suicide headaches " and one of the ways to break out of the cycle was you guessed it high doses of prednisone usually 80 / 60 mg alternating until the clusters were gone , usually in 2-3 days and than I'd go back to whatever at the time was my mg dosage 30/20 or 20/-10 . I had those big drops periodically and sometimes had the insomnia and or emotional highs and lows .
I've always been on the alternating dosages of pred and even now as I'm tapering , down to 1mg every other day and I can tell you my adrenal glands are affected more as I take LESS . Your correct for as long as your on prednisone your adrenal glands essentially stop producing hence the slow taper.
I'm grateful that by mid august I will be prednisone free as we all know what some of the long term effects of this medication that we as mgers often take.
It will be nice one day to conquer myasthenia gravis so all of us would be symptom and medication free.
Cj
Only drop 50 percent over a 6 month period of time.
That worked best for. Me.
That would me an you would go slow and be at 20 in 6 months.
I went fast a couple times ans was miserable. When I slowed down I I could function and was better off.
Going too fast just caused me to have Togo back up so I never made headway.
Slower is better.
Alternate days worked best for me too
I was put on 50 mg Prednisone 18 months ago. I was at that dose for at least three months, then began tapering. I am now taking 5 mg per day and have been for three months, so you can see it has been a very slow taper. I never had more than a 5 mg drop at any time and, in my case, it was the same dose daily. I see my neuro next month and do not know what he will advise next, a 1 mg taper? Every other day? Stop completely?
I too lost a lot of hair, at least 1/2, but when I was down to 15 mg it started growing back, not " good quality " hair, but I'll take it!
Good luck on your taper and please keep us posted.
Claire
I think with your taper you would have to be having some side effects. I have always been told you need to taper slow. It's side effects are a lot worse when you taper fast. I think I would talk to my neuro and see what he thinks. Good luck with your taper.