Thyroid UK
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Study: ‘Breakthrough’ Drug Reduces Graves’ Eye Disease Symptoms

clinical trial led by the University of Michigan Kellogg Eye Center offers hope for those with moderate to severe active TED. Patients had a significant reduction in symptoms after treatment with teprotumumab, a study drug the Food and Drug Administration designated a “breakthrough therapy.”

labblog.uofmhealth.org/lab-...

I know not many here are affected this thyroid eye disease but for those who are this is incredibly uplifting news.

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That's marvellous news for many who might develop TED. Thanks for posting.

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Shambles,

Great news although some of the side effects sound a bit rough.

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I agree but the side affects of the surgery have been more than I expected and I was expecting the worst. My eye now looks worse, my vision is worse with double vision, peripheral reduced, numbness to the side of my face and tear ducts working at a minimum causing painful dry eyes. I had a one wall orbital decompression, so that's the minimum surgery. To add insult to injury, I have been on the waiting list for the next surgery since January when it was always promised that no more than 8 weeks wait once ready for further surgery. I've been told another 2 months to wait. So I have in total 6 surgeries maybe more depending on the outcome of each surgery, so I'm thinking it will take around 6 years to finish. Too long.

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Shambles,

That's awful. It sounds as though your TED is quite severe so the breakthrough drug probably wouldn't be suitable for you. I wasn't certain from the article whether a course of injections helped reduce symptoms permanently or whether the injections had to be administered regularly to control symptoms.

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Nor I. I would think that it help reduced the muscle swelling behind the eye or reduces the fat build up. If it were to disperse the fat build up that would be amazing but as you say the antibodies will probably continue to deposit fatty tissue life long, so probably need a maintenance treatment.

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