Anyone had prednisolone and/or cyclosporin for TED?

[Ffantastig]

Has anyone had this treatment? Back in 2019 when my TED flared, I was offered a high dose of IV prednisolone plus cyclosporine for 12 weeks... but because I'd just come out of cancer treatment, and because I was all hyper and anxious because, duh, Graves, I knocked back the offer. I had heard that 'steroids don't have side effects, they have collateral damage', and didn't want to pile that onto the difficulties I already had. But now and then I wonder... was I an idiot? Would my eyes be stronger and less puffy now if I'd agreed to it?

(Though I probably shouldn't torture myself like this... :-D. But if the TED flares again, I'd like to have some info to consider in tranquillity - at the time, the young doctor was quite rushed and insistent about it, but the older consultant said we could watch and wait).

So - did anyone have this and it worked/didn't work/had side effects/no lasting side effects? I'd love to hear your experience.

[Buddy195 Administrator]

Sorry Ffantastig, Although I have TED, I haven’t had this treatment. TEDct offer a great advice line & are very helpful/ supportive. They have also recently set up a new Facebook group, with contributions from members and specialist ophthalmologists, so it may be worth you taking a look. I’ve joined a few of TEDct’s recent Zoom meetings & they are very interesting/ informative.

[Ffantastig in reply to Buddy195]

Thanks Buddy195 ! I'm actually a member of TEDct, but can't find the info on their info or Facebook - will have to brave up and try their helpline! 😬

[Buddy195 Administrator in reply to Ffantastig]

This is a copy of part email I received: Dear Member,

You may be interested to know that TEDct has set up a Facebook support group page. It is called Thyroid Eye Disease Support UK.

[EbonyEvans]

Not had the treatment but I have issues to Prednisolone. I’m currently on Dexamethosone instead. Just an fyi in case it’s been overlooked as an alternative medicine.