I saw my Dr. today and he scheduled me for three IVIG treatments a week for eight weeks. He did this because of my weaken state. I just finished eight treatments about two weeks ago which did nothing for my condition. He also referred me back to my old Dr. at the ALS center for a second opinion on my treatments.

Anyway my question is has anyone had this type of IVIG treatment?
Mike

Sorry, Mike, I haven't had IVIG. Can't.

I hope you'll explore the possibility of something else exacerbating your MG. You know how common thyroid disorders are. Are you out in the cold weather a lot? Have you been sick lately?

Just trying to help. I hate when MGers aren't doing well. It affects all aspects of life.


Annie

I went downhill when I went off Imuran. The Imuran was working but the side effects were so bad we did not realize it. So I was only on Mestinon for about six weeks then I got a small infection and went downhill from there. We started me on CellCept and prednisone but none of it has taken effect. He is hoping that the IVIG will get me back on track. When all of these treatments are done my arms are going to look horrible. I believe it's the prednisone it is causing me to bruise so bad. My Dr. keeps excellent track of my blood work I have a standing order for once a month and he reviews it very carefully.
Thank you
Mike

I'm really sorry to hear you're so weak. That sounds like an awful lot of IVIg... I'm disappointed that the CellCept/Prednisone combo isn't helping. I wonder if your doctor would consider plasmapheresis.

I have been thinking of what you say about Imuran, how you didn't realize it was helping until you went off it. I was thinking that my Imuran hasn't done anything, but it finally occurred to me that it's possible it's keeping me from getting worse. I'm just grateful that it doesn't make me sick like it did you.

Thanks for the update. Please let us know how you're doing. I'm thinking of you.

Abby

I have been Cellcept about 6 weeks. We did discuss plasmapheresis but he felt like it was very similar to IVIG so he chose the IVIG.
Mike

Hi Mike - I do IVIG every 2 weeks, but part of the issue with IVIG is the dosage. The normal dose of .4 grams/kilogram of your weight. I used to get it monthly for 5 days. I now get 1 gm/kg and do it bi-weekly. This give me a larger dose all at once without increasing the overall IVIG. It seems to work better for me. I've been doing this for about 6 months.

Good luck in finding what works the best for you.

Juanita

That's a huge dose of IVIG, unless you are doing tiny doses each week. Do you know how many grams per treatment you are getting? Please be sure you have weekly kidney function tests. I know someone who ran into trouble using a protocol of high dosage IVIG.

As for it not really working....well, that happens. Sometimes the MG is just bigger than the available treatments. Don't stop looking for answers, because the answers ARE out there!

I think before I was getting 28gm and he has increased it for this next series. I was wondering if they might put in a port since I bruise so bad and I have poor veins. I can't imagine what my arms will look like after 24 infusions.
Mike

I hope you get a port. I don't have any experience of it myself, but I've noticed people on this board who have them say they love them. I find IVIg exhausting, myself. I don't know how much is a reaction to the infusion and how much is just the ordeal. Maybe if you didn't have to deal with the needles it would be less of an ordeal.

Abby

It usually takes them 2/3 tries to get a vein. So take best choice and that's 48 sticks!! Yuck