[mojon]

in reply to: Rituximab #1184680

Karen,

I have GD with TED. Onset Dec 2015. I got steroids, including IV. My cancer doc suggested Rituxamab as he used it everyday, and it might help. He gave me a copy of the Michigan study. Mine was an off-label use. Eventually the company that makes it, Genentech did come back and replaced my 2 doses that I paid out-of-pocket $5,500 each. It’s hard for me to say what the Rituxamab did, versus the element of time, progression of the disease, and the preceding IV steroids. But what happened in my condition was the swelling went down, but I developed double-vision, which is still with me now. Of course I was hoping Rituxamab would fix everything, but it didn’t. I think it might’ve helped bring the swelling down (and the antibody attacking of my eye muscles). I’m getting close to 1 year since the onset and am talking with a doc who does orbit decompression about starting that before too long. I hope that helps, and I hope that your docs find the best solution for your situation.

Jon

[mojon]

in reply to: GD with TED #1184529

Thanks Liz, Kimberly and snelsen!

Since I’ve watched several of the videos, read some of the other posts, got your excellent suggestions and encouragement, I felt much better prepared when I met with the opthalmologist today. I know I’m not ready for surgery yet. I understand better what they’re watching for and why. But I was able to specifically ask about how the specialists would go about working on my situation if/when I was ready for surgery. This time, going to a different opthalmologist (than the one who only told me “Unpredictable is all I tell you, not an emergency, if emergency I jump in, and left), I got much better and reassuring info/help. I think it REALLY makes a difference if you at least have some basic understanding of what’s involved and what to ask about. Thanks to you, I’m in a better place today than I was yesterday. I look forward to watching every one of the videos.

[mojon]

in reply to: GD with TED #1184526

Thank you snelsen. I have read several of your posts and they are most helpful and informative.

[mojon]

in reply to: GD with TED #1184524

Just viewed a few of the videos. My goodness! I did not expect anywhere near this good information. This is fantastic!

Thanks.

[mojon]

in reply to: GD with TED #1184523

Thanks Liz for the reply and information.

Wow! So you had double vision for 3 years before getting the surgery? That sure seems like a long time, but maybe it took that long for things to settle down? I am encouraged that you were able to correct the double vision, if only straight ahead. That would be a real improvement for me.

I never had surgery or radiation for the thyroid. I was hypothyroid (Hashimoto’s) for many years. My doc told me that my thyroid just wasn’t much working anymore, and levothyroxin worked fine with no problems.

I am slowly figuring out what some of these eye doc specialists are. I have some helpful general opthalmologists that I see, but the guy that is in charge of figuring out if/when you need eye surgery is ready to retire and almost non-communicative. Tomorrow I am going to see a young doc who is supposed to take his place. They say she doesn’t mind talking with, and helping people. I plan to ask what experience she has with GD and what she might do to help me make the necessary connections in these specialties that have a good reputation. I have written down the specialties that you mentioned so I can ask about them.

Thanks again!

[mojon]

in reply to: GD with TED #1184520

Thanks so much Kimberly for the reply, information and the opportunity this message board provides.

I knew the Rituxamab was experimental. My cancer doc says he uses it everyday and he provided me some articles by U. Michigan (Kellogg Eye) showing possible benefits. I did find other studies saying it didn’t have any benefit. Insurance didn’t cover it. I think Genentech may actually provide it, but I had to pay up front $5,000 each dose ( X 2 ). That was 1-2 months ago. I notice the swelling went down and conjunctiva (red in the eyes), but the double-vision keeps coming.

I will read and study the info you’ve given me on the Thyroid tests so I can understand this better. I will also check out the GDATF videos.

Any info on GD people/groups in Missouri?

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