New member
 

I became a new member by replying to another post but I am not sure it was read and realize I should have posted a new thread.

I am 66 yrs. old and diagnosed with MG in Dec. 2008 and was started on mestinon and prednisone. I have expierenced every condition this desease has to offer. In Feb. 2009 I recieved my first 5 IGIVs and have been getting 2 infusions a month since then. I was also put on Cellcept at the same time.

I am very fortunate that my condition has improved. Starting around the start of this year. My double vision is gone along with the problems I had with swallowing and chewing. My strength has improved and my breathing is pretty stable. I still have days with very little energy and my strength and breathing is nothing like before I got sick. Only the pain has gotten worse.

My reply was to a member that was getting IGIVs weekly. (REZMOMMY)
I was wondering how long she was getting the infusions? My neuro has told me that eventually me he may spread out my infusions but not indicated when and if they will end.

I do not know if my improvement is the result of the infusions, the cellcept, or both. Maybe neither?

I have read posts about other sufferers getting IGIVs but none about about how long they have been getting them and I'm wondering if members could give me some input about how long they have been getting infusions.

Thanking you all in advance, Tony

Hi Tony,
I've been getting IVIG's since November 2005. The spacing between my IVIG's has varied according to how good or how bad my MG has been. I started off getting them once every two weeks and was able to space them out to once every 6 weeks. I was able to do that for a couple of years then for some reason I had a pretty bad MG relapse in April 2009 so I went back to getting them once every two weeks again. I have slowly worked my way up to spacing them to once every 4 weeks now and am planning on spacing them further to once every 5 weeks when I see my Neuro in June. We'll keep spacing them out further and further as I can. Originally, my goal was to be able to space them out to every 3 months but that never happened.

I am on Mestinon, Cellcept and IVIG for MG treatment. As you know MG affects everyone differently, so I am sure that you will get different answers according to how each individual person responds to treatment. Then again, that is probably why you asked the question in the first place. ;)

I am glad that your treatment plan is working for you thusfar and pray that you'll be able to space them out further as you go along. It just all depends on what your body tells you. I pray that you continue to improve.

Oh, and welcome to our MG Family. We are glad that you found us :)

Blessings,
Shari

Hi, Tony. Welcome. I like the way you put that . . . everything this disease has to "offer." ;) Funny but not.

I will defer to others who have had treatments other than Mestinon and steroids. I haven't had Cellcept, Imuran, IVIG or plasmapheresis.

I do know that sometimes insurance calls the shots with IVIG.

I hope you are doing okay on the treatments you are on. It sure isn't fun, is it?

Annie

Hi Tony,
I replied to you in the other post, not sure if you saw it or not. I am relatively new to my regular IVIG schedule. I have only been getting my monthly treatments since February. I do go two days a month as an outpatient. I have been on Imuran and Mestinon since Nov. 08. I was on Prednisone from Jan 09 to Jan 10. This is something that I really struggle with .... how to know what is working and when. I did not like the side effects of pred so I asked my dr to consider the IVIG. He did and I am doing better now. I am going to see a leading dr from the MG world in June. I have many questions but I really want to know if remission is a possibility and if he sees my treatment plan working to get me there. Sorry I couldn't be more helpful. Maybe someone else has been on IVIG longer and can provide more insight. Take care~ Melanie