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-   -   can you get more then one, 5 day infusion of I.V.I.G (https://www.neurotalk.org/myasthenia-gravis/162549-5-day-infusion.html)

MGdallas 12-28-2011 02:41 PM

can you get more then one, 5 day infusion of I.V.I.G
 
HI everybody, sad to say, i am new member of the MG community. I was dx back in feb. of this year. The reson for my qustion. Is that in april, i had my base I.V.I.G infusion, the 5 day one. After two weeks, i was in full remission of all my M.G symptoms. It lasted 10 weeks, it tuck about two weeks to get next one day infusion. That one lasted 7 weeks, then another two weeks, for the next one. This time it only lasted 2 weeks and the last one i had on December 5 did nothing at all. My nuro Increase the Dosage from .5gm/k to .8gm/k for the last one i had in dec.5 ,i am having my next one on dec.29, so what i am thinking is that, if i get another 5 day infusion and then go one a month that would do the trix and get back on my feet.

hopeing everybody having a goodday today
Francisco

Stellatum 12-28-2011 04:06 PM

Hi, Francisco. Welcome to the forum.

Yes, you can get more than one five-day course of IVIG. Many people here do that. I hope that your neurologist will understand that the one-day infusion isn't enough for you.

I hope your doctors will also offer you other treatments besides IVIG. Most people here take Mestinon, and most of us also take one of the drugs that suppress the immune system (Prednison, Imuran, Cellcept or others).

Abby

pingpongman 12-28-2011 09:58 PM

I get a 5 infusion treatment about every 2 months.
Mike

Juanitad 12-28-2011 11:55 PM

I got 5 days/month for about 2 years, along with mestinon, mestinon timepan, cellcept and prednisone.

I felt somewhat better so I went to 4 days/month, then 3, etc. When I got down to 2/month, it wasn't enough at .4 grams/kg of weight, so my doc switched it to 1.0 grams/kg of weight and moved it to every other week - I've been on that for about a year now.

You and your doc have to figure out what works for you. It's different for each of us, but please don't expect that 5 days in a row will give the same results as you got the first time [
I have never gotten the same great results I got with my first treatment which was 5 days in the hospital. I hope it does give you the same great result, just please don't be disappointed it if doesn't. I think you will eventually reach a combination of treatments that will work for you; it will just take time.

Good luck!

Good luck!

MGdallas 12-30-2011 03:28 PM

can you get more then one, 5 day infusion of I.V.I.G
 
I like to thank everybody for answering my qustion. I am taking pred 20mg/day sorry i forgot to type that and just had my IVIG Yesterday. My Neuro wants me cut back on the pred to see if the IVIG is working or not, i see him an Jan 31. if this infusion dos not work i talk about the 5 day infusion. i be puting my two cents worth when i can. I hope everybody is having a goodday today

Francisco

AnnieB3 12-30-2011 07:51 PM

Hi, Francisco. These guys already answered your question. I wanted to add a caution about Prednisone withdrawal. How long have you been on it? If you've been on it for awhile, it can be difficult to even go down on the dose, let alone get off of it.

What Pred does is to basically do the work of the adrenal glands. They might "go to sleep" while on Pred. Why would they need to work when Pred is doing their job for them?! ;) So when you go down on the dose amount or try to go off of it, your body might have symptoms of an "adrenal crisis." That could be anything from sweating to extreme fatigue to muscle aches to lots of other things. So make sure that you do a slow taper and talk to your doctor about it, okay?

Good luck with getting the right combo of drugs for you.

Annie


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