Peggy
Daniel Malito Community Admin
https://thyroideyedisease.net/living/my-experience-with-tepezza-the-good-and-the-bad
Hopefully it helps give you a bit of insight into Tepezza and how it may work or not work for you. Let us know if there's anything else we can do to help, and remember, you are not alone! Keep on keepin' on, DPM
MsJulie Member
I went thru the Tepezza treatment and am thankful I did. It stopped the active phase and at one point I thought "Wow, I'm going to be able to remove this eye patch and see normal again!" I have days where I do pretty well- seeing that is. Then I have other days where I am off. I've come to realize that this disease is also very dependent on levels of stress. I caught my TED early- I'm an accountant so my vision is especially important due to the long hours on a computer - I initially knew something was wrong but couldn't pin-point it. I kept asking my co-workers if the room appeared "foggy" and they would just look at me very strangely and say "no...." Then I went and got new glasses thinking that was the issue. Within one day of having new glasses, I realized I was still not seeing correctly and knew the explanation I received from the Ophthalmologist I'd seen "you have blocked tear ducts" was a bunch of bunk. I immediately made an appointment with my primary doctor who referred me to an Ophthalmologist that specialized in Thyroid Eye Disease- THANK GOD! From the time I noticed the symptoms and I started treatment with Tepezza was less than a year. Initially when I was searching my symptoms and came across TED, I discarded it as I didn't have bulging eyes but I did have all of the other symptoms. My best advice is to trust your gut. Get a professional who KNOWS TED and try all treatments offered. I have also done the radiology therapy. I have heard from my Oncologist that many people have success in vision improvement after this treatment- again, each individual is different and responds to treatment differently- for me it did not improve my double vision. My next step is the eye surgery which I am very nervous about but if it helps with the double-vision I am prepared to try it.