Graves’ disease vaccine trial: I have just had a... - Thyroid UK

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Graves’ disease vaccine trial

Feelingtired123 profile image
9 Replies

I have just had a thyroidectomy a few days ago and so far so good. I’m now home and just received news that they are trialing a vaccine for Graves. I had no idea this was happening. Too late for me but maybe hope for others. Does anyone know when it will be available in Uk and could you still take it it you have no thyroid because you’d still have the Graves but it wouldn’t be attacking the thyroid but may help in other ways?

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Feelingtired123
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MaisieGray profile image
MaisieGray

If it is the Daviad project, I'm not sure that it is yet at the stage of trialing a vaccine. In August 2018 the CEO of the company concerned said "The data shows that immunotherapy with apitopes® is a suitable approach to be investigated for the treatment of Graves’ disease and demonstrate the potential to be the first disease-modifying treatment, as well as the first innovative therapy for Graves’ disease in more than 60 years." The September 2018 paper published in Endocrinology concluded "The results show that ATX-GD-59 is able to suppress the immune response underpinning the immune pathology of GD and warrants further investigation through clinical trials in patients with this disease." So having a patented and licensed drug seems to be a little way off yet.

Feelingtired123 profile image
Feelingtired123 in reply toMaisieGray

Thank you for this. Hopefully it will come to fruition.

Fruitandnutcase profile image
Fruitandnutcase in reply toMaisieGray

There has been talk of this for some years, I knew about the work. Atitope were doing then the other day I came across this btf-thyroid.org/get-involve...

Turns out it’s being trialled in several U.K. hospitals and the trial was completed in September 2018! It will still take a while I imagine but if I was young I would do all I could to hang onto my thyroid - unless I had thyroid cancer obviously.

Feelingtired123 profile image
Feelingtired123 in reply toFruitandnutcase

Thank you for this. Sadly I have just literally ( Friday had a total thyroidectomy) had the glad removed after suffering with Graves for 20 years and the effects of long term carbimizole. I notice ( from the list of hospitals in report) that they were trialling it where I had my op and it wasn’t mentioned which I’m devestated about but I can’t reverse what’s happened. I just have to deal with what I have now. I’m kind of hoping they didn’t mention it because my thyroid way too far gone in the fact that I’d had a large goitre for many years.

Syllabus18 profile image
Syllabus18

I sympathize with you.

Valarian profile image
Valarian

This seems to be the latest:

apitope.com/graves-disease/

The phase 2 trial is due to begin in Q1 2019. There is noth9ng to say they are recruiting yet.

The phase 1 trial was run from a number of hospitals throughout the country, including three in London, and one each in Leeds, Cardiff, Manchester, Newcastle , Birmingham and Exeter.They were looking for people who'd never received anithyroid treatment (which at the time I hadn't).

I just missed the start of the Phase 1 trial, but apparently my thyroid levels were too high anyway. Presumably they have to be careful about including people who need treatment reasonably urgently, and for whom existing treatment is avaulable. No idea what the parameters will be for phase 2.

It's looking positive - but a licensed drug is still some way off.

Fruitandnutcase profile image
Fruitandnutcase in reply toValarian

It’s amazing isn’t it that the results of Phase 1 were so positive. It will be a great day when people with Graves can have a vaccine or hopefully it will be.

Valarian profile image
Valarian in reply toFruitandnutcase

It certainly is - I believe it's the first new treatment for Graves' in sixty years ! It's not just Graves' - the MS Phase IIb trial is also due to begin soon.

Hopefully it isn't all 'too good to be true'.

By the way -not sure it's actually a vaccine ?

Fruitandnutcase profile image
Fruitandnutcase in reply toValarian

Been thinking that myself in as far as if you get it when you’ve got Graves it can’t be a vaccine and I’m sure it isn’t something they would immunise everyone with like a measles vaccine so it must be something else - be interesting to know how it will be used. Single injection, regular injections and if so for how long, will it be a permanent fix or will it work like carbimazole? Wonder what is in it?

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