Ivig
 

Im going in for an IVIG treatment soon for pre op preparation for my thymectomy to get my prednisone use down a lil bit and i wanted to know what it feels like to have the IVIG treatment? like do your MG symptoms go away or what? also if anyone has had a thymectomy id like to know how long it took to see results from it, if any

Hey Brandon- good luck man.


I have Ivig every month and it's pretty boring, and painless. But it takes up 2 a week for it to work fully I think maybe even longer. You'll slowly start to get more strength I think. - I do.

As for the thymectomy, I had mine a year and 3 months or something ago. At first it was pretty bad because of complications after surgery. But then a month after I got a lot worse and all that but now it seems to be either better or it's my medication.


But you'll do great I'm sure man. Good luck

i'm very interested to hear about your experience with IVIG. my neurologist has discussed this with me as some thing we may try in the future, so i'd like to know if you feel it is beneficial.

Ditto I would like to know also
Mike

I had my first IVIG in 2005 right after I crashed the first time and just before I had my thymectomy. My neuro hospitalized me because my ins company was dragging it's feet about approving the treatment due to the cost. While they were dragging their feet, I crashed so he stuck me in the hospital and gave me 5 days of treatment. I didn't notice a difference the first 2 days, but on the 3rd day, I woke up and couldn't believe how much better I felt and the amount of energy I had. I felt like I did before I had mg! Since that time, I have had IVIG as needed (the insurance co decided it was cheaper to pay for the treatment at an infusion center rather than being hospitalized every time I needed it)

For the last 1-1/2 years, I have been going for treatment 1 day every 7-10 days. This schedule works for me, but for some people, it is better to get their treatments several days in a row or once every 2 months, or whatever. I would advise experimenting to see what works best for you.

For me, IVIG has been a life saver (literally). When I crashed this past November and ended up in ICU on a vent, 3 days of IVIG was what gave me back my ability to move my lungs and breathe. (Well, that and resting the lungs because the vent was breathing for me!)

I know there are people on this site who don't have the same experience I do with IVIG - just like everything else with this disease, it tends to be individualized for each person!

Good luck and I hope it works for you!

Brandon-
I have been getting IVIG treatments since I was first diagosed which was 17 years ago. Each person reacts differently to it as well. I used to get really high fevers, the chills, bad body aches,vomiting, and a headache that lasted for days. Through the years though I came to find out that hydrating with gatorade the day before the treatment, during, and even the day after helped alot.( As well as taking tylenol ) Also you might want to stick with a certain brand of IVIG too. I am still getting the treatments once every 3 weeks and keeps me going. Good luck!
-Tracey

I don't have experience with IVIG. I did want to let you know that subcutaneous IVIG is available through Walgreen's Speciality Pharmacy. It's called Hizentra. You are "trained" how to do it and then can do it at home. It's not without side effects though. Nothing is. I hope your treatments go well, as well as the thymectomy. Good luck and quick healing.

Annie

http://www.walgreens.com/pharmacy/specialtypharmacy

http://www.hizentra.com/

thanks everyone for the responses.....looks like im starting my treatment at northwestern on monday. when i get out ill be sure to let you guys know how it goes

so i had my first ivig treatment regimen last week and i feel waaaaaaay better than i have in months and months. since monday ive only take 5 60 mg tabs of mestinon in the same period of time i would have had 5-6 180 mg timespan tabs instead. this is amazing. i have my thymectomy the dayafter tomorrow cant wait to get recovering and finally get over this

scratch that......i meant to say that i had been taking 10-12 180 mg mestinon timespands in the same time that this week ive taken 5 60 mg tabs