Thyroid Eye Disease

[Marc06]

Has any of you heard of this trial medication (VRDN-001) for TED?

[PurpleNails Administrator]

Welcome to forum

Not heard of it & not been discussed here before.

Sounds interesting but early days. Treatment is by intravenous infusion.

There’s a few research & news articles about the product & predicted sales / performance compared to competitor products.

No first hand reports, all technical trial data / news about product.

ncbi.nlm.nih.gov/pmc/articl...

healio.com/news/ophthalmolo...

ophthalmologytimes.com/view...

This article is interesting as it compares the other TED trials & available treatments by competitors.

evaluate.com/vantage/articl...

UK trial information.

hra.nhs.uk/planning-and-imp...

Do you have TED?

[Marc06 in reply to PurpleNails]

Hi,Thank you so much for your reply! I'll check all the links to find some information.

Yes, I was diagnosed with TED a few weeks ago

[PurpleNails Administrator in reply to Marc06]

Do you have a thyroid issue affecting you too? Rare not to but does occur.

Eyes & thyroid issue issue although connected are treated by separate specialists.

Have you been referred to ophthalmologist & an endocrinologist?

How are your thyroid levels being treated / monitored?

Transient hyper / fluctuations are common in early stages of autoimmune thyroiditis. Level then can drop. TED can be worse when levels are high, low or fluctuating. Stable levels will help your eyes.

TED charitable trust is a Informative site about TED & symtoms

tedct.org.uk

Things you can do:

Taking a selenium supplement is said the help protect eye.  200mcg for up to 6 months.  Then reduce to 100mcg.  Can be brought over the counter.  Bear in mind selenium rich food can take you over the maximum requirement.

*Preservative* free eye drops & wipes.  Rotating different brands seem to help.  You could try, liquid versions for daytime & gel versions at nighttime.  

I’ve recently been using ocufresh carbomer lubricating eye gel it a light gel so best of both worlds.  Ocufresh have a drop called hypromellose or a brand called hycosan. Which has a squeeze pump dropper.

I also like to have a supply of eye wipes or a liquid cleanser eg Blephasol Eyelid Cleansing Lotion.

For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks).  Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones.  Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow, & this protects eye and helps retains the water.  

If swollen, inflamed & more painful, I switch to cold compresses.  

Add an extra pillow as night, you may find this reduces the swelling.

If you like to moisturise near your eye area use water based clear gels not oil / cream.  I did this as developed milia white spots round eye.  I found the puffiness & swelling reduced when I switched. 

Serious complications with vision or changes to eye appearance are very, very rare.  Don’t Google and panic over worst case scenarios, they are always the most severe examples.

It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. I put in an album on phone & “hide behind a cute kitty picture” (buddy195 tip 👍)

Very important to get a hold of blood tests (TSH, FT4 & FT3 & thyroid antibodies) checking your own progress & that all the right tests have been carried out. We can explain further once you have them.

[Agh2001]

I was offered the Lassen IL-11 Trial a couple of months ago, which, from the sounds of it, and reading in between the lines, they have more hope for... sadly it was delayed so I couldn't go on it.