Myasthenia Gravis For Young People Community Group

This Group is for young people with Myasthenia Gravis. For young people with this condition (I like to say condition instead of disease) we all know its hard and very frustrating, you all know what its like to have mg (myasthenia gravis) and you all need to know there are other young people with the same thing! Come join the Group! We'd love to hear your stories,...

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deleted_user 03/07/2010

Intravenous immunoglobulin (IVIG) is a blood product used in the treatment of inflammatory or autoimmune diseases, hypogammaglobulinemia and other diseases featuring low antibody levels

Whats is like going through this?
Has anyone done it and what have the effects been? (good or bad)

deleted_user 03/07/2010

I had 5 days of ivig it worked for a week or 2

deleted_user 03/07/2010

what was involved in having it done?

deleted_user 03/07/2010

I just had it hooked to an IV took 2 hours per dose

deleted_user 04/15/2011

I get an IVIG treatment once a month now for the last 3 years (used to be once every 4 months).. I love them, They make me feel good after about 3 days. I feel less week.. I have an implanted port now for easy access to my veins, but its just an IV. Mine is done in one day for 7 hours. The only side effects i get from it is sometimes i get a migraine headache for 2 days afterwords.

deleted_user 08/10/2011

I love IVIG's! They help sooo much,
I get one every 25 days,
my doctor is trying to get me off of it, and i'm kind of worried about that
because when I get my IV I can actually smile...
side effects for me is weight gain, pale skin and major headache. (n)

deleted_user 08/10/2011

I love my IVIG's too. I get the headaches as well.. ive had to go to the ER a few times for an iv of newbain to help with them. but now i just take 2 ibuprofen and 2 tylenol every 5 hours when i get the headaches from IVIG. my doctor talked about wheening me off too, but i really dont want to, bc i know they work so good for the month

deleted_user 10/18/2011

So I just had an appointment with my neuro and he changed his mind. So I'm still receiving my IV's every 25 days up until Feb (y) that's one stress out of the way! I normally run for about 2 hours And an half. I also now take Tylenol before I start. Does anyone feel really, REALLY weak the following days, for about 2-3 days?! Like I find myself having to roll out of bed, and I sleep like crazy! OH update; I'm now on 5mgs of prednisone, and now starting a suppressant called Imuran, AND mestinon slow release at night. Shit, I sound like a druggie! Aha!

deleted_user 11/27/2011

I take Mestinon 60mg every 3.5/4 hours, Cellcept (Immuno-supressent) 1000mg twice daily, Mestinon timespan 180mg at night and IVIG once a month. I feel like a druggie too.. I get terrible migraines and feel weak for a couple days after IVIG as well.. I feel like IVIG makes me restless, but then for the few days when I'm weak i feel like i could sleep forever too.. when i get the terrible headaches after the IVIG i take 2 tylenon and 2 ibuprofen or i end up going to the ER and they give me newbain for the pain.

deleted_user 12/06/2011

Wow! My pain feels awful, but not bad enough to go to the hospital-I'm so sorry! I try avoiding the hospital because I swear the doctors are confused, and the last time, the paramedics almost killed me! Update; now that I'm only on 5mg of pred I've already lost about 10 lbs, and to be honest, I didn't think it was going to happen, because I'm naturally curvy. Just don't give up, and try to wean off of it! You'll be amazed of the amount of sleep you get after. It feels amazing. Now the con is: IVIG's don't work so we with a lower dosage of pred. Is that true? I've relized that since I weaned down to 5, I feel like I'm on nothing (that's not a good feeling!)

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