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...
Hi guys!
My name is aj and you might have seen some of my posts before. Ive had mg for 7 yrs. recently, this yr., has been really bad. I've had about seven intubation in the last nine months. Its a joke. But whatever. Started doing ivig on like a monthly basis and its been 30 day or so since a hospital stay. Now I have two questions if you guys could help :)
1. I'm getting ready for surgery (thymectomy) so Im on tons of prednisone and I now have this weird acne/hive rash thing? Its 60 mg and it started right about the time I started prednisone. Just wondering if anyone experienced anything like this. I tried Clindamycin phosphate topical gel, which didn't help. Im now using ammonium lactate cream 12%, which I want to believe, is helping. Maybe its another med? Any who if you had a weird dermatological issue please share lol
2. The ivig has been working but every time Ive done it Ive ended up intubated then gotten it. This time I got it before I got too sick and it doesn't seem as effective. Does anyone else have varying results? How often do you do it? Does it help? Have you seen more results over time or do you feel your body build a resistance to it?
Seriously appreciate any input and experiences. Thank you!
Kind Regards,
AJ
My name is aj and you might have seen some of my posts before. Ive had mg for 7 yrs. recently, this yr., has been really bad. I've had about seven intubation in the last nine months. Its a joke. But whatever. Started doing ivig on like a monthly basis and its been 30 day or so since a hospital stay. Now I have two questions if you guys could help :)
1. I'm getting ready for surgery (thymectomy) so Im on tons of prednisone and I now have this weird acne/hive rash thing? Its 60 mg and it started right about the time I started prednisone. Just wondering if anyone experienced anything like this. I tried Clindamycin phosphate topical gel, which didn't help. Im now using ammonium lactate cream 12%, which I want to believe, is helping. Maybe its another med? Any who if you had a weird dermatological issue please share lol
2. The ivig has been working but every time Ive done it Ive ended up intubated then gotten it. This time I got it before I got too sick and it doesn't seem as effective. Does anyone else have varying results? How often do you do it? Does it help? Have you seen more results over time or do you feel your body build a resistance to it?
Seriously appreciate any input and experiences. Thank you!
Kind Regards,
AJ
Sorry things have been so bad for you. I have never been intubated. It sounds awful.
What I can tell you is about IVIG. It has been my salvation. I have infusions every 2 weeks. I am on lower dose of prednisone and haven't had rash.. (just road rage;)
I take mestinon 4 times a day and Neuro has order rituxan to start soon. Then hopefully off prednisone if I tolerate the rituxan (sp)
Will keep you in my prayers for good outcome for surgery.
Blessings
Dee
I have been on IVIG for almost 2 years. so far so good.
Dee
I was on low-dose Prednisone for many years, then on high-dose 60mg for many, many months. Interestingly, the rash-like problems always got worse, after IVIG - or even Rituxan. They were only mild skin problems, but they took weeks, sometimes months - to go away.
High-dose Prednisone will do a number on your skin, making it thin, even making it brittle (easy to get cut, or to get abrasions).
Talk with your Neuro - about Rituxan or Cytoxan. In MG cases - as severe as yours - these therapies may help a lot. (Rituxan has worked well for me.)
Yes - PLEX, Plasmapheresis - is often used in cases like yours, to pull you out of a crisis. Have you ever received PLEX?
I hope you turn a corner with all this, and recover better.
A personal comment, from the peanut gallery: are you strong enough to withstand a thymectomy, right now? Is there a thymoma, a cancer? If not, you might want to postpone a thymectomy, until you are stronger.
I'm not your doctor, I'm not there in the trenches with you, but I've been there in the past. When I was in your current condition? There was no way I could have withstood a major surgery like a thymectomy.
Again, I'm not your doctor, but comments from the peanut gallery often come from a place of concern.
Keep us posted - Ross
I am so sorry you've had such a rough time of it.
I am also on 60mg of prednisone, after a week in ICU with a myasthenic crisis. While there, I had 5 rounds of IVIG but none since then (5 weeks ago). The steroids have had a heyday with my body, skin included. I have weird bumpy, red, and white acne-ish spots on my face, and now my upper back. With me, it's more like acne than a rash, and between that, 20 lbs of weight gain, prolific sweating, facial hair, up-all-night insomnia, fainting spells, and vision problems, I have a serious love/hate relationship with prednisone. It's keeping my breathing under control (sort of) but the side effects are vile!
Hoping things continue to turn around for you!
Tamara