legs and arms feel weighed down
 

Does anyone out there feel like there are sand bags on their arms and legs. I am so exhausted. The doctor won't put me on Prednisone because of my weight. He says I could get diabetes. Right now I am on Mesitionin and Imuran. I started it 2 weeks ago. I feel like poop. I could just stay in bed and not move all day. This is the worst its been.

Hi Barbara!
 

Hi, Barbara. Erin is right, you should discuss IVIG with your doc. And I agree with him about the risks of Pred. It sounds like you need something in the short term to make you better like IVIG.

I hope you can get some relief from the Imuran soon; though it can take a long time to really kick in.

Annie

My arms don't feel heavy, but my legs sure do. They feel so heavy when I walk up stairs.

Yes, Yes, Yes... I thought it was just me because when I was Dx'ed i was told muscle heavyness was not part was MG, they sure have learned a lot in 18 years and thanks to all of you I have learned as well.

Hi Barbara,
Imuran may take several months (6 or more…) to be effective, thus as others suggested, you need something to help you in the meantime, IVIG or plasmapheresis.
There is also something else, an increase of your Mestinon intake. I presently take 3x60mg/d but 3 weeks ago, during our vacations in Sicily, the first 2 days were rather difficult: the mornings and afternoons visits plus the heat (July temperatures, they said…), so I took 60mg more: 7am-1pm-7pm and 11pm and the fatigue went away! I was even doing better than my wife…!
So talk also to your neuro about inscreasing Mestinon.
Maurice.

Hi Barbara,

I too remember that all too well and still get it on occasion when I'm not able to tolerate the mestinon. The worst time I had it almost on a daily basis was prior to the thymectomy in 02, so I had plasma pheresis which helped tremendously. Maybe you could talk with your neuro about IVIG or pheresis. Hope you're feeling better soon. Take care.:)

Hugs,
Pat

i was just started on mestinon 3 months ago it's those little things that i never thought of like i wear birkenstock sandals most of the year. the other day i was out at park watching grandson play ball ,wore sneaks because it was wet. then when i got home ,took them off i felt so much lighter on my feet. i can never figure out what is just me or mg!!!:confused:

Yes here too, Barbara