[snelsen]

#1018545

I have TED, also decreasing Synthroid. During the past year, I have had:
Solu Medro IV twice, prednisone 60mgm QD, and methotrexate injections. Nothing has helped my TED symptoms.
I did read the article in the newsletter @ the small study in Minneapolis; I have also seen an ophthamologist/endocrinologist/rheumatologist in Portland whose specialty is inflammatory eye disease. I am aware of the cost, that it is IV, and of the side effects (interferes with B-cell production>)
Has anyone with TED on this board taken Rituxin, did it help, and did you have complications? How did it help your TED?
Do you know anyone who has take the drug and their experiences?
shirley

[snelsen]

#1065606

I have decided not to take it, for lo and behold, one doc thinks I am not in the active inflammatory stage anymore, and that is when it is given. The studies are small. If you want to read about it, look at the last newletter, there is afeature article about it, and some docs in Michigan @ Ann Arbor. It is a big drug, with big things to weight, for it knocks out the B cells.

[Corinne]

#1065607

I was also looking into it. They are having a medical trial at Mayo Clinic in Rochester MN. But, I don’t have severe TED (but I just had RAI, so thought maybe I would qualify because of the "RAI increases the likelihood of TED" study…) so I didn’t qualify. But I was looking on the NIH websites and looked at the actual approvals for this trial, and this drug has been used for many different treatments including lymphomas/leukemias and lupus. It had a lot of side effects that scared me, but it seemed many of the severe risks were for the cancer treatments. But definitely a lot to think about! Will be interesting to see what the outcome is…

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