RollandeJuly 15, 2020 at 2:48 pmPost count: 3
Dear GDATF community,
In March of 2019 I was treated for hyperthyroidism with iodine radiation. I have since been taking 75 mcg tabs of Levothyroxine sodium (generic Synthroid). Unfortunately, my condition has evolved to include thyroid eye disease. My ophthalmologist recommends tepezza infusion therapy to treat my tearing, puffy eyes. Given the side effects, as well as the fact that I’m in my late 60s, I’m a bit hésitant to give it a try. Is there anyone out there who’s been treated with tepezza? If so, I’d love to hear your story.
RollandePolyphemusJuly 20, 2020 at 6:11 pmPost count: 2
I began Tepezza infusions on June 4th, 2020 and had my third one last week on July 16. I have had severe Graves opthalmopathy/Thyroid eye disease since around February of 2019. Tearing, dry eyes, feeling like there is somewhere between sand and chunks of glass in my eyes at times and strabismus (double vision) all the time bad enough that I must wear a patch on my right eye. I was diagnosed hypothyroid around 8 years ago and have been on levothyroxine since that time. Since starting Tepezza the most annoying problem, the tearing and gritty eyes has mostly gone. The proptosis (swelling that pushes the eyes out) is significantly reduced. I still have the strabismus so far. My eyes are still somewhat dry but not nearly as bad as they were prior to when the treatment started. I sometimes go several hours without having to use eye drops and am sleeping much better. I am still early in the treatment. For me there have been few side effects. Nothing the day of the infusion, for sure a bit nauseous and generally funky feeling the next day for a day. Some dry itchy skin for a day as well. Mind you I have just started this process. The studies I have read indicate that it is after the third treatment, which I just had a few days ago, that the real effects start to kick in. Of course all of our mileage will vary.KimberlyOnline FacilitatorJuly 23, 2020 at 10:41 amPost count: 4274
@Rollande – We have a few members of our Facebook group who have had TEPEZZA (TM) infusions, so you might be interested in joining. Do a search for @GDATF on Facebook, and then click “Join Group” at the top right of the screen.
@Polyphemus – Thanks for sharing your experience!RollandeJuly 24, 2020 at 10:50 amPost count: 3
Thank you so much Polyphemus for sharing your experience. Although I am still on the fence about moving forward with Tepezza, your experience is encouraging. Please keep me posted on your progress, if you do not mind, and good luck with the treatment.RollandeJuly 24, 2020 at 11:11 amPost count: 3
Thank you Kimberly, I will check facebook for GDATF.KimberlyOnline FacilitatorJuly 24, 2020 at 5:13 pmPost count: 4274
Great – be sure and answer all three questions when you join the Facebook group. If you don’t see all 3, you can email us at email@example.com. (The questions are to confirm why you want to join, that you understand it’s a moderated group, and that you agree to abide by the group rules.)aplicacionesAugust 7, 2020 at 12:20 pmPost count: 2
@Polyphemus- thank you for sharing your experiences with Tepezza. I was diagnosed with TED since 2018 and I wonder if you could share where are you getting your treatment? is your treatment center located in the US? Did you have any double vision before your treatment with Tepezza? I hope you are feeling better and thank you for your responses in advance.PolyphemusAugust 11, 2020 at 5:53 pmPost count: 2
I have had severe double vision since early 2019 and continue to have it. Bad enough I must wear an eye patch. I am in my mid 60s. I have now had four infusions of Tepezza and still have double vision and uncomfortable dry eyes. Both. I am in the US in Alaska and receive my infusions at our local hospital infusion center.NikkiLAugust 29, 2020 at 4:29 pmPost count: 1
I just started looking into Tepezza. I’ve been in remission from Graves for nearly twenty years but in the last few months my TED has progressed to double vision. The cost has me concerned since I’ve read that it’s over $300,000. I’m retired and my employer decided to cancel Retiree health insurance at the end of this year for anyone Medicare eligible. Any suggestions for someone just starting to research this drug. Is it worth it?KimberlyOnline FacilitatorSeptember 3, 2020 at 3:49 pmPost count: 4274
@NikkiL – The first step would be to contact your ophthalmologist to determine if TEPEZZA (TM) is a good option for you. From there, you can contact your insurance company, and if needed, there are patient assistance programs that your doctor can connect you with.
If your double vision is not too bad – and if it isn’t getting better or worse from day to day, eyeglass prisms might be an option.LO1636September 5, 2020 at 2:28 pmPost count: 1
Hello, I have a very good neuro opthamologist at John’s hopkins specialized in TED, based in Baltimore. Message me if you want the name
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