I don't know what I would do without IVIG. It is all that works for me. I'm not sure about the dosage but I will check into it for you
mlp

Thanks alot

Matthew it got me out of an exacerbation that had me afraid of crossing the street. Upping my prednisone didn't help at all. I got 2 grams per kilo loading dose ( over four days) and now one gram per kilo every month over two days. I don't always have the same dramatic response and usually need a little extra Mestinon the couple of days afterwards. Just like Mestinon, it works miracles for some and for some time, but may not work for some people or may seem to lose its effectiveness. Mestinon, prednisone, IVIg, Plex are the fast actors, but for maintenance we usually need an immunosuppressant. I take Imuran and hope the day will come when I don't have to take prednisone or IVIg. ideally, one wants a drug free remission! None of our treatments are without side effects and risks, Mestinon is the safest. b.

Wish I had seen this post last night. My local monthly MG group had a speaker and regional rep from Wallgreens home infusion program come outvro speak. They provide services nation wide and go to our local Drs to do education programs and will help less experienced DRA figure out brands and doses of IVG. Very informative. Did not know working people can get home infusion at night and on weekends.They has info on weight, doses, rate of infusion ect. I arrived late and did nottake notes. I think if you call the infusion group they can get you all kinds of info. We also talked about the other local infusion clinics and cost differences. Love this group.

I use Walgreens home infusion services. They have a wealth of knowledge. I had mine Thursday night at home. The dosage is based on your weight and severity of symptoms. Hate to say this... But sounds like you need a neuro with more experience. Mine even has an ivig nurse on staff. Ivig gave me my chew and swallow back. It does vary each time, and this time I feel much better than the last two times. I don't know what I would do without it. I even pay part of it myself as insurance doesn't cover the nurse. If you need a phone number for Walgreens (headquartered inchicago) let me know.
Be well,

Although Ivig didn't work for me, the Walgreens program is awesome. They are very thorough and you have an experienced nurse to administer in your own home on your own schedule. The pharmacist and another skilled nurse are just a call away and they contact your doctor for you if they think you need him. I have not ruled out possibly trying it again in the future at a lower dose over more time because the experience itself was so positive. Right now, plasmapheresis is working for me, but seems to have lost some of its effectiveness or maybe my disease is just getting worse over time.

IVIg did wonders the first few times but now I am beginning to wonder. I can chew, eat,et but my breathing still sucks .Last week I didn't feel like it helped at all. I had one Thurs and felt real good including breathing yesterday but now back to having trouble breathing. I am 5'10" and 180# and am having 400ml once a week. Hope that helps.

Hi Mathew,

Sounds like you need to find a new dr. I have IVIG also at home, every8 weeks. It takes about 5 days to kick in, but it really helps me feel stronger.

Judith

This time, i'm bouncing back faster (had it Thursday at home). I went out to dinner last night and trimmed my [little] banana trees this a.m. that will do it for me, as it's still hot in Florida, but maybe it's all coming together...we'll see.
I so want you to find a good solution too...
be well,

p.s. 25 grams, 144 lbs. but based on 140.
be well,

Your doctor's closed mindedness should be a big concern. Not only is he not willing to explore treatment options but he is asking you to do his research for him which is truly alarming. Doctors that treat MG know better and would never require their patient to tell them how to go about accomplishing it. Obviously, there is no treatment that fixes everything for everyone but knowing what is possible from a given treatment is paramount to finding a better life for yourself. I would keep your current doctor while you search for an experienced MG doctor. This is not time to settle for an average doctor. Look for the best possible practitioner available to you.

Good luck and I hope that you find the perfect doctor.
Angie

Hey Mat - hang in there!
yes - get a neurologist with some solid MG experience.
San Diego?

Start a new topic on DS, maybe.
asking for the names of MG Specialists around San Diego.

i mucked around for 2-years, with my local neurologists. then they sent me 120-miles away, to a Neuro in Boston.

and i thank the local neuros, for doing that. It helped everyone.
Not only me? But also the local Neuros, who did learn from my case (whether they would ever admit this, or not).
- Ross