Rituxan and low antibodies

[me2]

Hello all,
I have been on Rituxan for several years now. A few months ago I developed pneumonia and was hospitalized several times for it to get IV antibiotics. Then I was put on inhaled Tobramycin. I take the Tobramycin twice a day for 28 days. Then nothing for another 28 days. It seems to be working well as I have not had pneumonia again. I am on my third cycle of Tobramycin.

Because of the repeated pneumonias my Rituxan infusions were stopped. I had been getting them every 4 months. I am happy to report that I have had NO Rituxan for 8 months now and I am doing fine. My doc says that he is seeing people able to quit the Rituxan after a couple years. It is looking like I am one of those people. So far.

I had an antibody test a few days ago and it shows that I am very low on antibodies. Because of this he says I will likely stay on Tobramycin until my antibodies come up - or, give me an infusion of IVIG.

Has anyone here been in a similar situation? I'm wondering how the decision is made to do IVIG. So far I am tolerating the Tobramycin very well. I wonder if I will be kept on that instead of getting IVIG. Any ideas?

Thanks,
Kirk

[Alysia]

Hi Kirk.
I am glad you have found good med. I dont know anything about Tobramycin. But I recall my wg dr. Saying that Ivig in itself can be wg med. I also know a weggie (the other one who like you and I also has MC) who is treated by Ivig every few weeks without being on other wg meds. (She had a reaction to rtx).
Please update us how are you doing. Sending you prayers.

[me2]

Thanks Alysia. Prayers appreciated.

[mishb]

Wow Kirk, that doesn't sound the best, with so much pneumonia, but I'm glad it is much better now.

I've never heard of Tobramycin either, but being a "mycin" it is a strong antibiotic. Strange that it is keeping everything good.

I understand that IVIG works well, so maybe RTX can just be kept as a big hitter if you every need it again - fingers crossed that you don't :thumbsup: