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...
For those of you that have came off Prednisone was there a few weeks to totally get away from it and out of your system. They brought me off and it took two months. Now I have not taken it for about two weeks and alot of things have been going on shortness of breath, weak and just have not felt good. I feel the disease could be doing some of that or the cellcept hasn't kicked in yet. Just would like to see what some of you experienced. I am taking cellcept 2000mg a day and mestinon 120mg 3 times a day and had a IVIG done a little over a month ago. Maybe I should move to Colorada I hear they might be able to smoke pot at least that would be fun.
Thanks Bear
Thanks Bear
I have been off pred for 9 months now because it worsened my symptoms and became dangerous for me. I was started on cellcept 7 months ago but also get plex every week to help push back my antibodies and lessen my MG symptoms until the cellcept kicks in all the way.
Marick is right, it can take 1 year or so for it to kick in. If you are having breathing difficulty and other potentially dangerous symptoms, you should probebly be on something in addition to cellcept and mestinon to help you stay out of the hospital:)
Let your doc know your breathing is getting short. This is a no good and they need to get this under control.
Also your antibodies may be buildning back up now that you're not on the prednisone and this can also make the cellcept take longer to be effective.
Wait until your SOB is better before your Colorado trip :)
Jeannie
You came off predisone scarily fast. Normally it is suggested that you take months to come off that last 5mgs rather than a week . If the adrenals are insufficiently active, as is normally the case after a highish course of prednisone, it can take anything up to a year before they start responding completly normally again. That means that you do not even have enough of your naturally produced cortisol to help keep the MG away.
MG can get worst after reducing prednisone and there can be a gap of up to three months for this to show up. That is another reason why they normally taper at a much, much slower rate than your doctor adopted. If they do this they can monitor for returning symptoms. Curt, who used to be our practical expert on steroids, always used to recommend taking six months to reduce the dose by half.
Keep a careful watch on your symptoms and if they get any worst at all call the doctor to see if he wants you to go back on prednisone (or ivig or plasmaphoresis if you cant tolerate the prednisone) to give the immunosuppressant a chance to work. Essentially you have been without medication for the last few weeks since the latency period before the immunosupressant starts working is so long.
Ask Troy to explain how it goes on just cellcept and no steroids to give you a feel for what might occur so you can decide if that is the treatment method you wish to adopt.
I am in remission and down to 2.5mgs every other day but I expect to take several more months to get rid of that last bit of prednisolone since I want to make sure my adrenals are normal.
Gwyn
I had alot more trouble when I dropped alot. Then I started alternating day schedule and dropped less at a time and I did better.
You may be able to buck it out. ISome days I was tempted to go back up, then I watied and rested for about 2 days and it (symptoms) went away and I was better.
You may get through it,
If you make it through this drop make your drops less and it will be better.
Ann
go as slow as possible
Only 50% drop over a 6 month period.
For example
60 to 30 would take six months
It appears you are on no autoammune suppressant if the cellcept takes a while. I hope you do ok. Maybe you will be great when you get off predisone, I mean get it out of your system. Seems like I always felt good after the withdrawal. I hope that is the way it goes for you.
I even notice a 1/2 drop. I am on 101/2 one day and 10 the next. Hopefully this week I will do 10 every day. I will notice that. I get suicidal thoughts but they only last about a day or too. Wierd thoughts.Fortuantely I am sane enough to recognize they are just thoughts.
Ann
Barb