Called my neuros office today. Been waiting since Feb 4th to be called. Well they scheduled me today for 5 IVIGs. Starting next Wednesday. I really need them. Weak and my voice is bad almost all the time. The prednisone tapering really did a number on me. Plus my lower days I'm half dead as I said in another post. Hoping these give me back some strength and a voice. Kinds excited for them. Lpl

So excited for you - I hope it makes you feel like your old (pre-MG) self!!! IVIG is some amazing stuff, I'm so thankful for modern medicine!! Good luck, and keep us updated!

See I had last year after my horror story 5 IVIGs in the hospital. They didn't bring back my swallowing so the doctors there said it did nothing for me. Okay wrong. After my first one I was talking and wanting to wash my hair. Lol. I was up and walking after 2 weeks of being bedridden in the ICU. I also wouldn't get off my phone. Night and day. Lol. So is why I feel excited to finally get an IVIG. See to bring back my swallowing I had to have 10 plasmapheresis done. My story short. March 11 2013...11pm. Couldn't swallow my mestinon. Liquid or tablet. Breathing was becoming harder. Went to ER with the window down all the way to get air. Waited in ER after telling them I couldn't breath. Gave me beeper. Can u believe that! Finally got in. Doc told me to put the mestinon under my tongue like a nitro. Didn't work. Nurse was rude. They did a chest xray. I remember sitting at the edge of bed gasping for air. They came in gave me medication in a breathing thing. Nurse pushed me to lye back down.
Parents told me the rest because after that. I turned purple and overheated. Mom thought I was having a seizure but I was gasping and flailing for air. Then went limp and mom said my bladder let go. So I passed. The ER doc stood with his mouth hung open while the paramedics brought me back to life.
Next thing I know I was in another hospital. Was told I had 2 collapsed lungs. I had been incubated. Had 4 chest tubes. I had aspiration pneumonia which caused my crisis which caused my lungs to collapse. Another ambulance trip to a Hospital that knows MG. So 28 days in 3 hospitals.2weeks of incubation. I get my care now at the 3rd hospital.

Lol that was long sorry. Still sooo excited to get those much needed IVIGs. Woot

I really hope the IVIG will help you. I had five rounds over a years time - three while I was in the hospital (during 3 months in hospital) and two at home later that year because my eyes locked in one place and I couldn't move them. Not one procedure helped it just cost my insurance company a lot of money because the procedure is very expensive. I also had one round of plasmapheresis the following year and that did nothing to help my symptoms, etc. Can't take mestinon. Took it once and it shut down my lungs and I ended up in ICU for a week. Don't want to take a chance with cellcept.

I'm now just trying to maintain my life taking bachlofen, immuran, small amount of predsisone and valium all to help stop the seizures and horrible stiffness, etc. that is my life. The side effects of the drugs is also taking its toll but it's my only choice.

Good luck

Southern Bell

Fellow MGers -
How soon after the treatment did you see results?

I'm having my first IVIG treatment this week (day 3 of 5 prescribed) for my double vision issue that isn't resolving. I haven't seen any results yet, but was wondering what I good timeframe typically is?

Sorry to previous poster about not seeing results! That really stinks and is frustrating! I hope mine isn't the case!

I usually notice a touch of improvement that night.. but it isn't until day 4 (after a one day treatment) that It really hits me dramatically and helps.. now if I get a loading dose the IVIG itself is hard on my body it seems.. so it took a bit longer.. the first treatment I had (4 days of it)... i was better, but thought maybe it was placebo effect.. it wasn't until the next treatment 3 weeks later that it was like BOOM _ I woke up my old self... I haven't gotten back to that good in a few years.. but it was amazing.. so sometimes it can take a bit... Good luck!!

For the first few days after IVIG I fell rather sick - headache, aches & pains, & tired. About a week after IVIG, those symptoms are gone and I begin to feel better. About 2 weeks after IVIG, I am good as I am going to get, and then there is a very slow decline until the next IVIG and the cycles starts again.

hope you feel better soon
kathie

I am not sure if this is the right category for this question ---- I am considering using Ivig as my treatment method to replace cyclosporin that I am currently taking. I successfully used Imuran for 16 years but at about the 14th year mark I began developing squamous cell skin cancers (arms and hands). By the 16th year they were popping up like popcorn. One month I developed seven at once on my two hands. About 15 months ago, my neuro switched me to CellCept which did not slow the skin cancers down and then a few months after that he switched to Cyclosporin. I have had a total of 12 skin cancers treated since the first of 2013 and now in 2014, I have two small ones visible but do not seem to be getting larger.
BUT, my MG symptoms are now uncontrolled. All the things we all experience, can't raise my arms, SOB, double vision, unable to walk, etc. If I increase the Cyclosporin to hopefully reduce the MG symptoms I am most likely going to increase the skin cancers again. Also, I have better results/less side effects from prostigmin but that drug has been discontinued to I am back on Mestinon battling diarrhea. I can take a pill for that though.
My last Ivig treatments (5 days, 4 days, 3 days, 1 day over 4 months) was very helpful in reducing symptoms while giving the Cyclosporin time to work. My neuro has now suggested I use Ivig in place of an immunosuppressant. He suggests a 5 day initial dosing and then one day per month thereafter. The vascular dept. has recommended insertion of a mediport so I can get the treatments monthly without having to use the traditional needle stick.

Finally, to my questions -- 1) Does anybody else just use Ivig and Mestinon? 2) If so, do you have a mediport? PICC line? 3) Any other treatments used instead of immunosuppressants/corticosteroids?

Thanks so much for reading this lengthy post and thanks for any suggestions you may share with me.

I do just IVIG with IV's each time... I do also have small fiber neuropathy, so them poking my veins doesn't bother me much.. I don't let them touch my big AC veins (the ones in the fold of your elbow) because I want those to stay healthy in case of an emergency.. So they tear up my hands and wrists mostly.. I got IVIG every 2 weeks for a year, and now every 3 weeks.. They have talked about immunosuppresants, but at this point that worries me, so until I have to, I am trying to avoid them.. (I have two small kids who bring home germs, and work around a lot of people).....
They have talked about a port.. but again the risks of infection worry me (a very rare complication, but it is one).. After I had an IUD perforate me when they put it in (and crashing with my illness from that).. I am much more hesitant for any procedures.. unless necessary