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...
can some one please help me about 3 months ago i was prednisolone 100mg every other day... is this a lot ? and way dont i feel better i feel worse i can cope like this i can hardly move.
thank youÂ
Those of us in the US take prednisone instead of prednisolone, but they are equivalent in dosage and effect. I started at 20 mg per day, then gradually worked up to 60mg every day and about 4 months after starting my MG symptoms mostly went away. At 60 mg/day I couldn't sleep so mostly stayed at 40mg per day. I was on prednisone for a year.
So, 100 every other day is a high dose, but not abnormal. Most of us start with a daily dose and eventually switch to an alternate day dose. Not sure that would make a difference. Some folks get started at 100mg/day of prednisone.
As to the slow response. Prednisone actually acts fast to slow the immune system from producing new bad antibodies that are the cause of MG. However, they are in the blood stream and take some time to disappear. Also by the time we have symptoms of MG, up to 80% of our muscle receptors have been destroyed by the attacks. They do regenerate rapidly when they are no longer under attack from the bad antibodies. Three months would seem a reasonable time to see improvement.
Here in the USA, if our insurance covers it, we may be treated with IVIG infusion (blood antibody additino) or PLEX (blood antibody cleaning) as a quicker way to get improvement while waiting for the prednisone to work.
There are some folks who do not respond to prednisone too, but more often there are folks who can't take prednisone because of the side effects. Prednisone and prednisolone are the usual first treatment plan.
You are at the dose and the time where the prednisone should be taking effect. You might ask your doctor about trying a daily dose (i.e. 60/mg per day). The alternate day dose is better long term if you stay on prednisone, and it helps in tapering it later, but early on a daily dose is probably more likely to take effect.
Prednisone and prednisolone at high doses are really bothersome. I pushed my doctor (who wanted me to stay at 40/day) to try 60/day as I was in a rush to get things under control as my wife was in cancer treatment at the time. Even then, it was about 4 months until I really got rid of my MG symptoms and could start the taper down to the lowest effective dose.
Once prednisone worked, I was able to reduce it drastically and keep things under control. Eventually I got off of it and found I had gone into remission and didn't need it. That was 4 years ago and so far I am still in remission.
It is always useful to ask your doctor why your treatment isn't working and ask if a change in the medicine dose or schedule would help. Mine said higher doses were likely to push me into type 2 diabetes.
Good Luck, Russ
Also since it dampens the immune system, we are much more susceptible to viruses, bacteria, fungus growths etc. When I took high doses, I had a couple of times I had a foot fungus, I had thrush (throat infection) and some other problems that a normal immune system would have fought off.
Russ
Wishing you strength!
thank you xx