Active Phase
I am starting IV SoluMedrol infusions this weekend for an active phase of TED. Future Tepezza is planned. I was wondering if anyone had any effects/results with steroid infusions.
Hi
, thank you for sharing with us! I'm sure others in our community with chime in with their experience if they have had this treatment. Have you received your first infusion yet? If you have, how did it go? Best, Sam S. (ThyroidEyeDisease.net, team member). the only side effect was I now look like myself no sinus or ear infection they are gone, my hair is growing back. My suggestion is drink lots if water and keep your appointments. Take a before and after picture. I'm glad to hear your side effects we're manageable and you are doing better now!! Thanks for sharing those suggestions, I'm sure that members of our community will find them helpful! Best, Sam S. (TED team).
hi there! Just wondering why they aren’t just starting you right away on Tepezza? That’s what it’s for! I wasn’t able to have it during my active phase, only because it wasn’t available yet. I just finished my 8 infusions ,( almost 3 yrs after active phase) & it was amazing. I would definitely suggest going straight for the Tepezza treatment, since it blocks inflammation and many other symptoms from TED. I actually felt better when I was having my infusions. My swelling noticeably went down after the first 2. w/ very mild side effects. Unlike Steroids. Best of luck!!! I’m hoping to start Tepezza soon. My eyes started with swelling in September and have developed other symptoms. I’m hoping the treatments help with light sensitivity so I can drive again. I’m sorry to hear that you’re experiencing these symptoms. I didn’t have light sensitivity, but the swelling was awful. Hoping Tepezza gives you some much needed relief. All the best, Jessica H (thyroideyedisease.net, team member)
Do you have to pay for tepezza infusions
Thanks for the question. I'm going to attach an article for you to review, that gives a great overview of Tepezza. Your first step with this would be talking to your doctor about the program and there is also a contact number included below for you to reach out for more information.
"The company that makes Tepezza has a program for those who take it. The Horizon Patient Services program gives you access to a personal Patient Access Liaison (PAL), who will help you navigate your insurance and treatment process. Talk to your doctor about this program. You can also call 1-833-583-7399 for more information."
Please let us know if you need anything and keep us posted!! Sending positive thoughts and vibes your way! -Beth (Team Member)
https://thyroideyedisease.net/treatment/tepezza
My infusions are actually kind of pleasant if you can believe that!
I usually take a blanket, some snacks and my kindle or an eye mask and rest.
I honestly thought I did not have any side effects.But I have been having muscle cramps quite frequently and they are bad. I did not realize that is One of the more common side effects according to my refusion nurse.I'm glad to hear your infusion experience has been a positive one, bringing a book and getting some rest are great tips! Those muscle cramps must be frustrating and i'm hoping they clear up for you soon! All the best, Sam S. (TED Team). thank you for your kind words 😊
