IVIG -- How often - How much

[FarmLady]

Hi,
I'm curious about how IVIG has effected people with MG. I was diagnois in 2/05 with MG. I was taking 60mg of Mestinon 4x a day and 180mg timespan at night. Began having a lot of difficulty with stomach ect... Doc switched me to CellCept in July and we stopped the Mestinon. I've never had been on the prednisone.
I had my first IVIG in Aug.. 5 days 5 1/2 hrs per day (45 gr a day) and
just finished my second -- IVIG 5 days 5 hrs per day (40 grams per day).
I am back on mestinon -- 30mg 4x a day along with the cellcept.
My thymus gland has not been removed, however the DR. is now talking that the surgery may be the next step.
After the first round of IVIG (couple of wks later) I started my day with more energy and not so much fatigue. This only lasted about a month or so.
In reading some of the chats, I hear of people doing IVIG weekly, biweekly etc. and I realize that every one is different (especially with MG).. But I would like to ask, if you are doing IVIG frequently are one doing a dose a day or are you in the 5 day range like I seem to be at present?
Thanks so very much for your response

Patti

[Juanita]

Hi Farm Lady - I started my IVIG last year with 5 days (4 grams/day) every 2 months. However, I noticed that my best results were after the first 2 days and I didn't notice much difference with the last 3 days. (What a great feeling after the first 2 treatments! I had so much energy the third morning when I woke up:D ) Also, I noticed that the IVIG seemed to wear off after about 4 weeks and I had about 4 weeks of extreme tiredness until it was time for the IVIG again.

I spoke with my neuro who switched me to 2 days every month which has been great for me - I don't seem to have the real down times.

I also take 2,500 mg of Cellcept daily, 180 Mestinon Timespan at bedtime and 60 mg mestinon when needed (about every 6 hours during the day)

Hope you find the level that works for you - as everyone keeps saying, we are all unique:eek:

Have a great day!

[GaBelle]

Hi! I can take up to 120mg of mestonin every 3 and a half hours but I don't always need that much...often just 60 now that I have IVIG one day every 6 weeks. I'm also on 750mg of Cellcept twice a day. I am going to talk to my doctor about moving the IVIG to every 4 or 5 weeks...that 5th week is pretty hard. I'm at my best 2-3 weeks in. I've been on prednisone all summer but am weaning down right now...thank goodness! I put on 25 lbs during the summer thanks to that stuff!

[armysoldierc148]

so, i've had the thymectomy and since then i've been doing the ivig thing. it has worked so great for me and now they have the sub-q ig so i don't have to hook up to the iv pole the next time. since the last time, i've been three months with no meds at all. i hope everyone else has at least one med that works as well. good luck!!!

[The Canadian]

I'm on high-dose treatment...have been for over 2 years, and I still get fatigued around day 11.

Still take 12.5mg prednisone, 2g CellCept and 60mg Mestinon q2 hrs. I also take the SR tablet at bedtime a few times a week.



ArmySoldier: how much IGg and when are you getting it sub-q? That format is not 'approved' or 'allowed' for MG patients in Canada yet. The Talecris/Gamunex representative told me that PID patients are in a trial right now and that the sub-q isn't as glamourous as it's made out to be. The rep said for me to get 90g twice monthly would be awkward on my stomach (?).

Thanks

[markincleveland]

The only IViG that is FDA approved for any diagnosis is ViVaglobulin from CSL Behring

[Maxs9th]

Hi Patty,
I get IVIG 18g every three weeks - had a thymectomy in April of 2006 - take CellCept 3g, Mestinon 60 mg every 2-3 hours - have been on Prednisone and Imuran.

They keep messing with the IVIG and try to space it out longer. I have gone as long as 8 weeks but do best every two to three weeks.

I have a port now because my veins kept blowing - hated it at first but I have learned to appreciate it.
Good luck -
Gabe

[Memnon]

I keep fighting with my Dr. on this. It's a real struggle to get him to prescribe me any IVIG at all. He says his main concern is that because the IVIG is made from hundreds of other people, someth8ing will get through the screening process and I will catch some other serious disease.

Right now he has me on one infusion a month and I don't think it's working for me. The 5 infusions every 6 weeks seemed to work best.