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Currently being treated with Tepezza

Having had TED for 8 years and having to live with the horrible way it affects your eyes, looks and self esteem, I finally managed after fighting for years to get the Tepezza treatment. I had the initial partial dose which did not improve my appearance but following infusions number 2&3 I was exhilarated when my eyes were no longer protruding and the swelling above and especially below the eyes disappeared, I felt incredible and I was literally on cloud 9.
The side effects were a bit rough I must admit with cramping being the most painful, but my nose and throat became extremely dry and sore and my skin was dry, red and patchy, but even though those side effects were not pleasant, seeing my eyes clear up made it very easy to bare as I knew the side effects would disappear at some point but my eyes were back and I’m sure anyone reading this knows just how badly you want your eyes to return to their previous condition before getting Graves and TED.
Even the color of my eyes returned to a very deep blue which was not the case during the previous 8 years.
I could not have been happier and during an evening out a few weeks ago, I got the first compliment of my eyes in 8 years, meaning someone I didn’t know mentioned I had really nice eyes.
It was an overwhelming feeling of “ finally my eyes look good again” as they most certainly did not during the previous 8 years rather the opposite was true and they looked awful.
I went into my 4th infusion last week on top of the world.
After that infusion I felt very different with the side effects I had been experiencing in that I wasn’t feeling them? I now felt truly blessed and thought that my body must have become immune to those effects. As each day passed and i was no longer having the constant leg cramps nor was my throat or nose dry and sore along with several other side effects that were no longer present I just felt a sense of happiness I hadn’t felt in years.
Then Friday night 3 days since my 4th infusion I started to feel pressure behind my eyes? I went to bed a little worried only to wake up Saturday morning with swelling and some minor protuberance? As Saturday turnt into Sunday I was able to watch in real time as my eyes began to swell and protrude even more where by Sunday night my eyes where literally back to how they had been before I started the Tepezza infusions.
I called my Tepezza rep 1st thing Monday morning to explain what was happening.
It was at this point I realized that the fact I had not been feeling any of the normal side effects I had felt throughout since starting the treatment may actually have gone away with good reason, the medication that was causing them may have not actually been in my system as how else would the fact my eyes had responded so well to treatment now be actually reversing itself?
I asked my rep if this is something that has happened before and been documented to which no explanation could be given.
My rep called the infusion center where I had received the latest infusion and informed them of what was happening and after speaking with them, I was informed they would contact me immediately to ask what had happened.
They in fact did not contact me and even though they were made aware of the situation by 10 am that day, I did not receive a call from them till after lunch time the following day where for all intense and purposes they were only calling me to launch an attack on my character and I was being yelled at down the phone with questions like “ do you have any idea of how extreme my accusations were” and I was belittled and made to feel awful?
I kept on trying to say that I wasn’t making any accusations against anybody? But the person on the other end of the phone just carried on yelling about the consequences of my accusations.
It made no sense as to why I was being attacked so I stated that I was going to hang up the phone if the person didn’t calm down, and it was only then when I was actually asked to explain what had happened? I was in shock but I did start to relay what I had experienced, but very soon into my account I started getting constantly interrupted where I would be told something about “ there was concern about that certain batch of medicine I received”or “there had been outside people working at the infusion center over the weekend “ so every time something like that was mentioned I would ask what did that mean? And how does it relate to what I am saying and each time the subject got changed and I just became more and more confused.
I finally asked that we get a Tepezza specialist involved as I was tired of being put in a position where I was being made to feel as if I had done something wrong. The phone call finished with the person who I had been speaking with saying that they were going to go to the clinic where I had received the infusion and I would be contacted shortly. I could not believe that they had not already gone to the infusion clinic and done some sort of “ checking” at the very least but they hadn’t, rather as I said they just waited for over a day to contact me back and then literally attacked me leaving my feeling after the conversation had ended, more and more upset and the fact I have been dealing with the consequences of the disease for over eight years then having battled for so long to get the treatment to now having just been made to feel so incredibly bad and in the short space of literally under a week going from the highest of highs having seen my eyes clear up to now where they were bulging and swollen and I with being attacked I made to feel like a terrible person it just became too much to bare and I literally broke down and had to leave work because I was not able to emotionally get it together.
Over the next couple of days what's when I broke down physically as well and the stress of anxiety of everything that was happening left me unable to get out of bed.

I am desperate to speak to someone who can help

  1. Hi , thank you for sharing your journey with us so openly. Many in our community can definitely relate to TED being such an emotional rollercoaster. We are not medical professionals or the makers of the Tepezza treatment, so, unfortunately, are not able to assist in finding you someone to speak with. We do have a community filled with those who are contending with TED and are here to offer you any support we can. It sounds like you are doing everything you can to figure this incredibly frustrating and upsetting situation out. We are sending you all the positivity that this situation gets resolved soon. All the best, Sam S. (ThyroidEyeDisease.net, team member).


    1. I can hear the distress you are going through and am so sorry you had such an awful and confusing experience after your 4th infusion of Tepezza. I know it has been more than two weeks since your post and I am wondering if you have been given any firm answers as to what caused the complete return of TED symptoms after such remarkable recovery after your first three infusions. I hope you have gotten some answers and are now on the road to recovery. Thyroid eye disease is an exhausting disease! Knowing you have been dealing with it for eight years, I know you are eager to get beyond it. Please keep us informed. All the best to you. Roxann K. Moderator

      1. I have Graves Disease and know how frustrating it can be when people don't take our condition seriously. So far I've been able to avoid TED but now . eyes are starting to bother me. One of them is starting to swell so I've purchased some good eye drop that help. I've been reading extensively about treatments for TED. There are steroid drops that can help. There is Tepezza as another alternative. From what I've read all of this can help but it's not a permanent fix so you will have to stick with it for a long time, on and off. There's also Orbital Compression surgery. Best to ask your Endo doctor for advice on which is best for you. I have eye bags now that make me look bad. I used to have pretty eyes. For now I've decided to wear glasses that do a great job hiding the bags. Hang in there and good luck!

        1. There's a lot of information out there and as you said, it's always best to consult your doctor before trying anything. I also wear glasses. They do a great job at hiding eye changes. Steroid drops can be helpful. I used them for a bit until I was diagnosed with keratoconus and could no longer use steroid drops. Each person has their own ted journey and what works for one person may help someone else or it may not be for them. https://thyroideyedisease.net/living/conversation-guide Here's something to think about next time you visit your doctor. Best, Kelly S. Contributor and Moderator.

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