Joint and Muscle pain...
 

I'm just wondering if I'm the only one that has moderate to severe joint pain since I've weaned off Predisone this mid June, especially when I sit idle for more than 10 minutes or so it takes me a while to get going, the more I walk and move the better I seem to feel, the more time goes by the WORSE I'm getting and starting to have some concern I even have a FROZEN shoulder now that won't go away at times it keeps me from sleeping...

My specialist keeps telling me it's my adredeline gland that needs to kick in, I was as high as 60mg per day on Preds for 8 months then slowly weaned off to zero June 16th and have not liked the side effects so far, I feel terrible PAIN, PAIN , PAIN joints and some muscles, I keep telling myself I'll start feeling better at a certain point but it's the opposite!!! My nuro even went as far to tell me to take a low dose of PREDS which I refuse to I'm on Imuran, Mestinon and weekly Plasmapheresis and keeping my MG symptoms under control.

The other thought I had is could it be my weekly Plasmapherisis acting up, I'm on my 75th this coming Wednesday, could it be removing something out of my system?

You need to go see an endocrinologist to be checked out. Fasting, morning labs are in order, especially to check your cortisol level.

It's your adrenal glands (and cortisol) that tank when you are on Pred. Not adrenaline! ;)

Pred can have long-lasting effects, on the muscles as well.

Are you having times of unusual sweating or fatigue?

Do they do a metabolic panel after Plasma? They should. The endocrinologist would do that as well. They need to check for albumin levels also.

Please find a good endo and be checked out!

Annie

Yes I sweat a lot and fatigue quite fast, my red blood count got ready low and they have me on Ferrous Fumerate 600mg a day and it did help to bring the count up from 91 now to 145 and my himacrats not sure whats the right term LOL are @ 4....I'm no Doc, ask me about cars and mechanical stuff that's more my type of language and I'm also taking B12 5mg a day after you reccomending me...

You may have come off of Pred too fast and could have an adrenal insufficiency. It is fairly serious.

No one but an endo can fully evaluate it.

Forget the medical terms! It's all about how you feel and trying to figure out what specialist you need to help you. Sure, it's good to know as much as you can, but it's not as crucial as getting the help.

I hope you start feeling better soon!

Annie