Hi all,
Haven't been on in quite a while. I have not been feeling that great and started having shortness of breath. There was some confusion with my neurologist moving to a new hospital and as a result I had not seen him since Oct. 09.

Well I went to the ER and eventually caught up with my neuro. I had tapered down prednisone and took my last pill on Jan.13/10. I am not wanting to go on pred again if I can avoid it. I got to the ER Friday afternoon Feb. 5th and did not get to see my neuro until Mon. afternoon Feb. 8th. During the weekend I saw several internal medicine doctors and a few general neurologists. All of them wanted to start me on a high dose of pred right away.

I held my ground and refused. I said I am in the hospital, my breathing and condition is being monitored constantly. I also said that I wanted to wait to speak to my neuromuscular neurologist to see what his plan would be. This could be the reason I was left in the ER from Fri afternoon until Sunday evening before I was moved to a room.

When I did see my neuro he felt that a regular schedule of IVIG treatments was a fair plan considering I did not want to go back on the pred. While in hospital I had a two day IVIG treatment and I will receive that every four weeks now.

I am wondering for those of you who receive regular treatments, how did your dr decide on the length of time between treatments?

Thanks for listening to my long post. Take care ~ Melanie

Melanie, I wasn't able to tolerate IVIG -- but, my doc had set up a similar schedule for me -- 2 days every month. His infusion nurse explained that my doc had found that this schedule seemed to give maximum benefits (strength) without a "down" period. The two ladies that were in the room on the first day with me (they had other autoimmunes) LOVED the schedule.

I don't have IVIG so I can't answer that.

Stick by your guns on the pred issue, YOU know what is right for your body and what you can handle. Thankfully my Dr. is against pred {which is good because I can't take it anyway}

I saw my neuro yesteray regarding the IVIG I had last month.
He said everyone is different, and the treatment could last weeks or months depending upon the individual.
He said once I start feeling cruddy again, I should let him know, hell schedule me again, and thats how the both of us will know what my schedule will be like.
I had a 5 day treatment, first one. Now Im going to get I believe he said 2 or 3 days, in my home, shorter treatments as maintenance.

Hope you feel better.

I am doing 2 days every 3 weeks right now, but I have had it every 2 weeks, every 4 weeks, it all just depends on how the mg is doing over time. I have been on IVIG off and on for about 5 years and it has been a lifesaver.

I really try to pay attention to how I am reacting each time I get the IVIG because it is so darn expensive and I don't want to be getting unnecessary treatments. My insurance company has been really good about approving the IVIG, but I just shudder each time I see how much they pay.

Having said that, I really believe IVIG is what is keeping me going.

Just FYI, I am also on 3,000 Cellcept daily, 60 mg mestinon every 4-5 hours and 180 timespan at night and 60 mg prednisone daily. The prednisone is mainly because I have been having bad double vision problems the last 6-8 months and I'm trying to get my vision back in line. I've been on it for about 2-1/2 months and there is some improvement. I'll see the neuro next week and discuss it with him then; hate the side affects!

As everyone who has mg can tell you, everyone is different and you have to figure out what works for you.

Good luck!

Thanks for the input everyone. I am hoping that this schedule will be a good fit for my MG.

Hi Rezmommy,
Since the IVIG's seem to be working for you (they weren't for me), there is no reason why a good schedule could no be found, the present one or a different.
I agree with all the above comments, listen to your body throughout the month and inform your neuro about your condition, that will enable him to shorten (or lenghten) the time beetween infusions.
Maurice.