Mark, I'm glad to see you back on the forum.
And by the way, you look much better without tubes in your nose.

I hope you continue to do well. I am sorry about your crisis.

So sorry you had to go through all that but glad you got the IVIG treatment you needed.

MG can turn on a dime. 7 weeks ago I could function and work full time. On 6/19 it hit 90 degrees here and I ended up in the ER with shortness of breath. I got large dose solumedrol (steroids) and no IVIG and was discharged 3 days later on 80 mg prednisone. 2 days later back in the ER again with shortness or breath, more steroids, no IVUG or plasmapharesis, discharged again on high dose steroids. I begged for plasmapharesis or IVIG and neuro refused. New neuro and 7 weeks laters, still on short term disibility, cannot function, work or leave the house. New neuro finally faxed script for IVIG which probably will not start before next Monday if I am lucky.

I am glad your hospital knows how to handle MG. Getting the right treAtment as soon as possible is half the battle. How high did they bump your steroid dose back up?

The solumedrol dose relieve the immediate crisis breathing issues, but now I am stuck for 6 more months trying to wean off prednisone again. The prednisone has me so sick and weak. I am swollen like a blow fish, have loads of black and blue marks and experienced internal gastric bleeding. At this point I think the meds are worse then the MG.

I am glad you were able to get back to work so fast. I am hoping IVIG will allow me to return to work or I will have to apply for long term disibility. Please keep us posted with your progress. Are they going to put you on an IVIG maintenance dose now?

thanks
kathie

Kathie,

Working nights, I am able to avoid the heat. We have also been experiencing unseasonable mild heat. On the Monday before the crises, I was out and about in the noon time temperatures. It was only 80 degrees, but it felt oppressive. Later in the week we hit 100 degree temperature beginning on Thursday and projected to go forward over the next seven days.

On Friday afternoon I open the door from my 70 degree apartment to go to the ER into 100 degree heat. It hit me like a ton of bricks. My friend's car was not air conditioned.

A week before the crises, I increased the dose from 15 mg every other day to 20 every day. I had the Stanford appointment in a few days. They raised it to 60 mg.

My new neurologist wants this level for a few weeks, then we begin the taper again. Like many here, he prefers the dropping 6 percent increments. He also want to infuse once a month for the next 3 or 4 months to give the Cellcept time to start working.

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Katie,

I was infused for 5 days in the hospital. It's been nearly 3 weeks since the last infusion. I got two big bottles and one small bottle a day. I am feeling very strong with a lot of energy. My symptomless are mild and appear so far to be stable, not getting worse. I've been back to 60 mg Prednisone per day for a month.

If normal antibodies were infused during the treatment, how long should my positive results last?

I will be seeing my new neurologist Tuesday afternoon. His plan is to infuse once a month for 4 months, until the Cellcept starts working.

Any suggested questions that I should be asking new neurologist? I already Annie's list.

-Mark-

The first and so far last time I had IVIG it lasted about 6 to 8 weeks. I must admit I felt a lot better after the 5 day course, well once I had recovered from the anaphlylactic shock that occurred on the last day that is.

They infused me at a slow rate the first time, in case the IVIG induced anaphlylactic shock. I wonder what percentage of people go into anaphlylactic form IVIG?

-Mark-

For me it was a convergence of three things: The Prednisone taper with no immunesuppressor, stress filled summer (cab collision), and the first real hot weather of the season, approaching 100 degrees the day I went to the ER.

Do you have to fall of the cliff before they throw you the IVIG rope?

What was the reason you were refused the IVIG earlier? How can the mess around with the breathing issue!

I hope you have the same experience that I did with the Immune Globulin. I had improvement from the first day. My doctors and nurses noticed an improvement too. I continued to improve, even after the fifth infusion--and still going strong.

-Mark-