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...
Hey everybody, yes I have been on here since March & have done like most, good & bad days. But after my H stay & my trial to see if I was better, I went to TennMark's neuro, he put me back on my orginal docs script of 120-180mg,s a day. I had a reaction to Medrol DP. Not on prednisone but figure the neuro will want me on that at my Monday appt:(
I have not been doing to hot lately, had to take 240mg's yesterday & today. Still fatigued,exhausted & pain. What's the diff or what is Cellcept, timespan, IVIG'S ,plex,?? I'm just so worn out w/ trying to keep up w/ all 3 of our journals, med changes, Doc visits,the runs to the ER!!! I think I'm being selfish, I know I've read these things & I know I can go to the links page, search the discussions but my mind is just not connecting. If anyone has the time to share that knows & please just do a quick rundown of the above. I know these are things to ask & tell my neuro too.
Please only do it if you can, I know everybody here is wiped w/ MG & many other things so please don't if it's asking too much! Geeze I just retread this, I've never done this before maybe I'm finally cracking or just gone plain crazy!!! Where's the normal MeLisa???;( I don't like this, this just usually is not me!!! Much love to everybody!! Sorry
I have not been doing to hot lately, had to take 240mg's yesterday & today. Still fatigued,exhausted & pain. What's the diff or what is Cellcept, timespan, IVIG'S ,plex,?? I'm just so worn out w/ trying to keep up w/ all 3 of our journals, med changes, Doc visits,the runs to the ER!!! I think I'm being selfish, I know I've read these things & I know I can go to the links page, search the discussions but my mind is just not connecting. If anyone has the time to share that knows & please just do a quick rundown of the above. I know these are things to ask & tell my neuro too.
Please only do it if you can, I know everybody here is wiped w/ MG & many other things so please don't if it's asking too much! Geeze I just retread this, I've never done this before maybe I'm finally cracking or just gone plain crazy!!! Where's the normal MeLisa???;( I don't like this, this just usually is not me!!! Much love to everybody!! Sorry
Best wishes,
@Annette, yes I so don't like the feeling of pity party blues much less sharing them on others, but I am glad I have you guys & your encouragement, my body has a bunch of yuk other stuff to like yours, ahhh but we'll get thru it!!!
Thirteenblessings, thx for your hope, it makes us stronger & you said it well "guesswork"!! Good way to put it:)
Well I think I'll get back up on that horse & keep on going:)) MeL
Yes, It is all on the links pages and when you are down, it is hard to find:-)
Quick rundown: Mestinon (pyridostigmine bromide) comes 60 mg and 180 Timespan, the 60 mg has generic,the 180 doesn't and often is released erratically and some neuros won't use it for that reason. (600 mg maximum/24 hours for safety's sake) I think it lists 700. (info on links page under Mestinon)
Fast actors (immunosuppressants) prednisone (listed on links page under that heading for more complete info) inexpensive, wonder drug with bad side effects at high doses and long term, IVIg and PLEX require time for infusion and exchange, are very expensive and at least the first should be done in hospital setting (outpatient)
Slow actors (immunosuppressants) Imuran (oldest, most studied), CellCept (probably fewer side effects, but newer and in general takes longer to work), and even newer drugs used off label as is CellCept, (Rituximab seems especially effective for MuSK + MG)
Thymectomy (surgical removal of thymus) requires hospitalization and seems most effective in young women, newly diagnosed (accepted wisdom, efficacy not proven, ongoing study)
Hope that is helpful. b.
Love,
Gayle
We were brought up thinking...if we focus on ourself or make ourelf happy we are selfish. That is a lie I battle everyday.
I am on cellcept, and predisone. Predisone apparently works to stop the immune system from producing the "bad stuff", Cellcept also does that but apparently has less side effects.
The treatment plan that works for me is
1. Thymectomy which took about a year to take effect.
2. cellcept
3. predisone ...which I am now from 60 to 10 after weaning off of for over a year.
Have a great day....
Ann
Sorry your feeling so hard on your self. You have so much to keep up with and feeling so bad too. We are only human right:)
SOunds like everyone spelled it out for you here already. I take 60 mg mestinon 5x's daily,( timespan not helpful for me) cellcept(immunsuppresant) 2000mg a day , and plex once a week.
I hope things calm down enough for you to understand the information and get the treatments that work for you.
Big hug and no, you're not being selfish at all! You so need a break and lots of TLC.
Love,
Jeannie
Calmday
TERRY