Thyroid Eye Disease - Teprotumumab treatment

[Henry6]

I have been told I have Thyroid Eye Disease (TED) and have been reading about a new treatment just approved in the USA called Teprotumumab or Tepezza which appears to be very successful in treating TED.

I also read, that it is in Phase II Clinical trials in the UK and Phase III in the EU (sps.nhs.uk/medicines/teprot... and have been trying to find out when that might be approved for patients in the UK (or EU).

Does anyone have any knowledge of the NHS approval phases, how long they take and when this drug might become available? Are we far behind the US - ie. have we just started trials or have the trials been taking place for the past 2 years?

Just curious - as it sounds like it's very effective treatment.

[shaws Administrator]

Henry6, I cannot answer your question and any member who does will respond.

[TSH110]

It’s eye wateringly expensive in the states:

“A spokesperson for the company said teprotumumab will cost $14,900 per vial, with full treatment over 6 months approximately 23 vials, and that the wholesale acquisition cost for that amount is $343,000, with an annual net realized price of $200,000.” 😳

but I hope you can get it, as it sounds very effective. You could look out for trials here you might be able to join. Don’t see any mentioned anywhere. ☹️

I’m afraid I know nothing about the machinations of drug approval or what Phase II really means in terms of getting ones mitts on some here if FDA approved already

I wonder if helvella might know about such things

[Henry6 in reply to TSH110]

Thank you, I just got a reply from the company as well - at least those prices removes the thought of going to the US to have the treatment... 😳😄

[TSH110 in reply to Henry6]

Sorry to put the kybosh on it - my gob swung open like a ransacked handbag at the price of it - unbelievable. Crowd funding is my only though of how one might raise all that dosh. It is a shame drug development is not done purely for the good of people’s health rather than as a profit making exercise by drug companies ending up with prices like this for a drug that could help so many people with a most debilitating condition. I hope one day common sense will prevail over reliance on market forces to try and keep everyone as healthy as possible.

[Buddy195 Administrator]

Hi Henry6, is your TED still mild or has it become more severe? I have mild TED & have not been offered treatment as my symptoms are not ‘severe’ enough.

My Endo recommended 200mcg selenium. For dryness I use HycoSan Extra, black seed oil and lutein & zeazanthin (Eye Complex 7 from Amazon). My eye swelling is not as pronounced as it was in the summer & my eyes seem more aligned. Wearing reactive glasses has really helped. Occupational Health have secured me a bigger pc screen at work and lighting that can be dimmed. At the moment my biggest issue is night driving, as the glare from headlights causes me discomfort/ pain. The ophthalmologist has recommended yellow tinted lenses to help combat this & I'm going to try these. What are your current symptoms?

[Henry6 in reply to Buddy195]

Hi. Thanks for your message. I would think my TED is still mild.. I have very heavy and swollen eyelids, a bit of retraction on my left eye but not too bad. At some points during the day they feel fine but other times they get really dry and uncomfortable and feel odd.

Unfortunately I work shifts so I have to work really late and nights some time.

I've just started the Selenium and will look at the other things you mention and then basically hope it won't get too bad.

[Buddy195 Administrator]

Remember to keep posting if you need further support or advice. I found the information pack from TEDct useful & I’ve spoken with them a couple of times via their advice line. They have been very supportive; calling me back with lost of specialist TED ophthalmologists in my area.

[Henry6 in reply to Buddy195]

I will, thank you. It's so helpull to talk to others who've been through the same. Thank you.