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...
Good morning everyone
I was was diagnosed MG jan of 2014. In large thymus removed march of 2014 treatment since then ..prednisone 60mg daily pyridostigmine 60mg 4 times a day and IVIG 1 day monthly! by about feb of 2015 MG was pretty under control started to taper prednisone 60 to 40 for a 2 to 3 months 30mg then 2 to 3 months then 20mg then 10mg then 10mg every other day 5 every other day for a 2 to 3 months I am currently at 2 1/2 mg every other day .. dring these months of tapering all symptoms have been continuously getting better. But over the last 2 months I have been getting joint pain especially in my hands and feet, stiff cant hardly move hands in the morning and cant hardly walk on my feet.. once iam up and moving it gets a better but still painful! was worried about RA .. Doctor ran the tests and she said everything was within normal range , so now wondering if its just the tapering of the prednisone
I was was diagnosed MG jan of 2014. In large thymus removed march of 2014 treatment since then ..prednisone 60mg daily pyridostigmine 60mg 4 times a day and IVIG 1 day monthly! by about feb of 2015 MG was pretty under control started to taper prednisone 60 to 40 for a 2 to 3 months 30mg then 2 to 3 months then 20mg then 10mg then 10mg every other day 5 every other day for a 2 to 3 months I am currently at 2 1/2 mg every other day .. dring these months of tapering all symptoms have been continuously getting better. But over the last 2 months I have been getting joint pain especially in my hands and feet, stiff cant hardly move hands in the morning and cant hardly walk on my feet.. once iam up and moving it gets a better but still painful! was worried about RA .. Doctor ran the tests and she said everything was within normal range , so now wondering if its just the tapering of the prednisone
There are some things I can think of that may be related to the joint pain. The best route is persisting with your doctors in getting an explanation, but some things many of us have encountered including:
-- prednisone does mask many other conditions and as you taper it these may be showing up (as you mentioned worrying about RA). That will require additional testing and also waiting to see what happens longer term.
-- there is something called steroid withdrawal that has some of these symptoms. You can search and find out about it
-- blood sugar and other changes can occur with prednisone withdrawal and cause problems
-- when I tapered off prednisone after a year on it, I had pain and stiffness due to mild adrenal insufficiency. It gradually went away but bothered me many months after stopping prednisone. The adrenals have been shut off and need to get started up again, which can be slow, painful while waiting, but generally they get going and the cortisol they produce is needed to feel decent. My doctor said the faster you taper the more the pain, and I tapered from about 30 to 0 in a few months, faster than recommended, but I was willing to handle pain that could be controlled with aspirin type meds rather than keep taking prednisone.
Keep your doctors up to date on your condition and persist in pinning them down as to what is going on.
Good Luck
Russ
also had extreme pain, and mg symptoms flaring. Keep asking questions. I have learned a lot from thus group. Best Wishes.