[S01663333]

in reply to: Rituximab #1172933

UPDATE 8/3
So I went to see the dr today and fully expected him to clear me and send me on my way. He said “I have good news for you. I spoke with a friend of mine who is an oncologist. She said the reaction you had to the medication can be controlled by pre meds.” He is sending me back to try this again at her oncology center in wheat ridge. Hopefully things will be better this time. I will let you know how things go this next time. Paying to the lord to help me through this with success.
Jennifer

[S01663333]

in reply to: Rituximab #1172927

I am sad to report that I did not take well to the treatment. I had an allergic reaction and broke out in hives. I had an itchy throat and they stopped the medication. I spoke with my doctor and he said no more because he doesn’t want a severe reaction, so i am sad. : ( it looks like my only option now is surgury if I choose to have it. I might have to live with my fucked up eyes. I just can’t imagine having that type of surgery. i suppose that “it is what it is.”

[S01663333]

in reply to: Rituximab #1172925

Hi everyone,

Thank you for all the replys.

Shirley- thank you for all the information. My doctor thinks I am still an active phase which drives me nut because it’s been a long time. I just have enough makers that they think it is active. I ahave my eyes checked all the time and my vision is fine but i have glucoma (i cant spell) due to the graves. My eye pressure has been controlled with meds. I will definently let everyone know how it goes and I will post updates over the next few months to give everyone information. I am very hopeful because I am horrified at the thought of OD.

Kimberly- thank you for the study I have read this along with many others. I kind of feel like a lab rat due to the small scale of studies, but I am hopeful.

tnapavlu- I will let you know how it goes. I see Dr Michael J Hawes and he is excellent. He is at 850 Harvard street which is a drive but worth it. He referred me another dr to argue with my insurance about rituximab and it worked. The other dr is Eric Letko and he is also very good but is just familiar with rituximab and not graves disease so I have to see them both during this treatment. I will give updates. I go in tomorrow for the first treatment.

[S01663333]

in reply to: Terrified or orbital decommpression help! #1170740

Thank you for the reply. I have been reading the posts related to orbital decompression and find them quite helpful. I am just wondering if I am making this a bigger deal than in needs to be. I am also wondering if anyone has had any luck with steroids or if they are are a waste of time? Thank you for your help.

Jennifer

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