IVIG frequency and MG
 

Hello everyone!! It's been a while since I"ve been on here.. I have just had to get on with life and try to just live as best I can with everything going on.. I was run down thinking about it all of the time!!! I have a current diagnosis as CIDP.. but it is atypical.. I do have some numbness/tingling, but only at times.. Anyhow.. I can't stop thinking about MG as a possibiltiy with these paresthesias as maybe just a coincedence?? My weakness ia mostly proximal (hips and shoulders) and bulbar/face when tired. My hands used to be weak (jelly fingers), but the IVIG has cured that = thank goodness!


My question is, I am getting IVIG every 2 weeks now.. It has been working great _UNLESS i get sick with a cold/strep etc.. my whole body gets weak.. I'm like a lump of jello.. well hormones have always seemed to affect this all (a few days before menses - sorry tmi I know- I get weak and the first few days of REALLY weak) my eyelids really droop- my right worse than my left, it is SOO noticable! IVIG fixes this within 48 hours.. but it really is hormonal/fatigue and sickness exacerbated.. I do have some diffuse muscle wasting and a triple furrowed tongue too (however my musk test was negative.. but I have always tested negative for antibodies, even with known past exposures, so i'm not sure how reliable it all is)..
So I didn't know if it was MG, should I still be having ANY sypmtoms if I am getting IVIG that frequentlY?? I feel like most MGers only get it every 6 weeks or less and it lasts a lot longer.. They are talking about putting me on immurane or cellcept as well, but since IVIG is maintaining me most of the time We are going to wait for now Thanks in advance for any help and hope everyone is doing well! Yall are so great!

IG is an individual case by case dosage/time schedule based on many variables including diagnosis, treatment response, symptoms, your weight in kg. With MG, unless in spontaneous or drug induced remission, we will have varying symptoms and possible breakthrough symptoms even while we are on treatments and well controlled. I take cellcept, prednisone, mestinon and 2 days IG every 2 weeks for the past 2 years and still have some occasional breakthrough symptoms. I just deal with the symptoms when they are there and am just thankful for the improvement I've seen. You need to have a very good working relationship with your neuro where there is a contunual exchange of your observations, progress and setbacks (and why you think they happened) and it will work for you. Good luck to you!

I get 60 grams every 3 weeks, and have for over a decade. I have two friends who get it every 2 weeks and know one woman who does it every 10 days.

You have to find what works, and then realize it won't work perfectly every time. Hormones are a huge offender for women with MG.

Good luck.

thank yall so much!! as far as finding a neuro that I REALLY click with has been hard.. The dr now does seem to listen to me, since I crashed and ended up in the neuro hospital for a week, however I dont' feel like there is much of an urge to find what is really going on.. but at least we are doing treatments!!
I think working so much this past few weeks, plus getting strep throat and a cold/cough from my kiddos, then hormones has made me crash.. I haven't had swallowing or speech or droopy eyelids in months and this past week has been awful- I really look strange when I look in the mirror! it catches me off guard! My rheumy is thinking about putting me on immuran in the next month.. I am afraid of doing immunosuppresants though - have yall had any complications from them?? Does it take a long time to work? Thank you so much for yalls replies, i really appreciate it!

I have been on Imuran for a year. I have not noticed any side-effects, though some people have digestive problems with it, and sometimes it's an appetite-suppressant. I hear that it's generally well tolerated, though you'll need regular blood tests while on it. It made Mike (PingPongMan, on this forum) really sick.

It takes a long time to work. I'm still waiting. Prednisone is faster, but the side effects are pretty severe, from what I hear.

If you go on Imuran, you should make sure your doctor gives you a blood test first to make sure you don't have a genetic condition that makes you unable to metabolize it. The test is called a TPMT screening.

Abby

I was on Imuran for 12 months and it only made me sick and lost 35 pounds. Imuran takes 8-12 months and Cellcept is about the same but can be quicker. I am currently on Cellcept and eating better. Another lady on here has been on it some time but no weight loss yet. So each of us are different. I once did 3 IVIG treatments a week for 8 weeks and the results were nothing but a waste of a lot of money. I just discovered my case is very complicated because I have 4 positive antibodies. Not sure where we are going from here. Tapering off Prednisone currently as that almost destroyed my legs.
Mike:hug: