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...

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IVIG TREATMENTS

alfredsr2
alfredsr2
HELLO all. I am looking to see if anyone has had a situation like mine and if so has it worked. I was diagnosed OCT 15. I have been on 60mg of mestinon and 60 mg of prednisone for much of that time. I have had 2 IVIG treatments. 1 in JAN 11 and one just 2 weeks ago.

My neuro's suggested yesterday that I am not responding to the treatment and maybe I should have the IVIG on a monthly basis and drop the prednisone all together.

I have faith in my docs and have no problem with the IVIG, I am curious if anyone else had been treated that way and what was your results.

HOPE ALL IS WELL, AND GOD BLESS. ALFREDSR52
xmas25
xmas25
When on high doses of prednisone drs like to find treatments to lower it. I had allergic reaction to ivig so I had phersis for several Yrs monthly. I was told ivig would be monthly and it seems many people here get it monthly. You can't just stop prednisone. It has to be tapered and usually takes a long time! I'very been on 40 to 50 mg prednisone for 4-5 yrs. As a result I have rather serious osteoporsis. But I can't function without it! Hope it's a sunny day where you are and you take a minute to enjoy!
steelplayer
steelplayer
In my case, I was diagnosed with MG in July 2015 I then started out on mestinon in September 2015 which helped a bit with the throat, speech and swallowing problems but then I had to go on prednisone as well as I had worsening vision problems such as blurred and double vison. I also had Imuran added to my daily meds in February 2016 but they state that it can take 6 months for the Imuran to take effect. The overall plan was to start IVIG and Imuran and reduce prednisone to what ever ends up being the least possible amount.

My first IVIG treatment was during the time frame of March 11th through the 16th. I had been admitted to the hospital with a couple of other things going on as well and it took quite a few days to begin to feel the effects of the IVIG treatment but it did make a difference in the long run. My neuro then started to taper me back a little on the prednisone after the infusion. ( from 40 to 30 mg per day as I am having a lot of insomnia and muscle cramps). I am scheduled for 30 mg for two weeks and then I am to back off to 20 MG of prednisone for the next 4 weeks.


I am set up to go in to a local clinic April 18th, for 3 more days of infusion at 5.5 hours per day. The infusions are to continue on a monthly basis for the next 6 months.

I believe that most people getting IVIG infusion are pretty much on a monthly schedule at least during the initial treatments. I will know in another week whether IVIG continues to help improve my situation.

Good luck with it all. As they state on here, everyone is different and the first year can be hard as the neuro tries to find what works for you.

Steelplayer
Barbel
Barbel
I was on a lower dose of prednisone (20 mg) and Imuran for 2 years. I had a decline, with MG symptoms getting worse. My neuro started IVIG once a month, and it really has been a miracle treatment for me. I am still struggling to get off of the prednisone. I am currently on 3 mg a day. Symptoms return, if I drop 1 mg , 1 day a week too often.

Of all of the drugs used to treat MG, prednisone is my least favorite. The long term side effects frighten me. I am facing upcoming cataract surgery, my cataracts probably got worse from the prednisone. I always seem to pick up any side effects from any medicine that I take.

Good luck!!