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Treatment with Tepezza Infusions

Hello Everyone. I was just wondering if anyone has been treated with IV Tepezza for their Thyroid Eye Disease. Did it help with bulging, double vision, swelling, watering? Any side effects? My eye specialist has recommended it but I'm very nervous about it. Thanks in advance for any input.

  1. I did have the Tepezza infusion treatment back in 2020 when it first came out. I recall just being so relieved that there was finally a treatment for the thyroid eye disease that had been challenging me for three years. Since my treatment, I have talked to many TED patients who have gone through the treatment also and many TED peers who are anticipating Tepezza. You are wise to ask questions and learn as much as you can to make an informed decision about going forward. That being said, since my treatment, I understand more about this first treatment for TED and hope I can help you make an informed decision. Proven by studies the total number of eight infusions gives the best results (and improvements are usually gradual). For me, I was willing to make that five month commitment to get on the other side of TED. Although we know everyone's improvement can be different and the amount of time to feel and see the improvement can vary also. But everyone I talked to did see improvement enough to finally have the surgery they needed after completion. I will share with you my timeline of improvement. After the first infusion I noticed a bit less pressure behind my eyes which gave me hope! By my third infusion, my swelling around my eyes had decreased considerably and continued to decrease throughout the following infusions. More than half way through, the double vision was gone and by the time of completion I had no bulging in the left eye and just a touch in the right eye which was almost unnoticeable . So those and the remaining symptoms, including eye pain, redness, visual ability had improved. I was left with eyelid reaction and some extra tissue above my eyes from the long term swelling. Because of my improvement with the Tepezza I was finally able to have the surgery to correct the retraction and extra tissue. You also ask about side effects. Again, I have talked to so many TED peers who have had Tepezza treatment and the amount of side effects vary. Most had a few, some had all and there are those fortunate ones who had absolutely none! I was among the unfortunate who had most! Muscle cramps at night in my shins and feet were the first to start and were just annoying. Nausea came and went but I do have IBS so am more prone to nausea. I did live with headaches too. My endocrinologist helped me with treating the headaches and nausea. At around the fifth infusion I did lose my taste (I missed my chocolate ice cream cones). Throughout I did notice a minor loss of hair and some dry skin. Fortunately I never experienced any high blood sugar! The most concerning was a plugged feeling in my right ear which of course was annoying and interfered with hearing clearly, especially in groups of people. After completion most of these side effects cleared up. It did take about a year for the plugged ear (hearing) to completely go away. I was so happy to know this side effect was not permanent. I know this can be daunting but I never regretted going through the infusions to get on the other side of TED. I feel I am giving you a worse case scenario here, knowing that many experience no side effects. The upside is that the treatment took care of all of my symptoms of TED. I hope this information helps you and if you have any other questions, please feel free to ask. All the best to you! Roxann L. Moderator

    1. Thank you so much for your response to my questions and concerns. I am scheduled to start the Tepezza as soon as insurance approves it. I am still nervous but willing to do it. Since my diagnosis of Graves, they rushed to remove my thyroid and damaged my parathyroid glands so I now not only have to deal with TED but I also can no longer control my own calcium level. I am facing a parathyroid transplant in the near future. In the last 6 months my entire life has changed so drastically. I am so overwhelmed with all of these health problems at only 43 years old. Again thank you for your reply as you have eased my mind significantly. ❤️

      1. It has been some time since we talked here. I am hoping your insurance has approved you for the Tepezza treatments by now. Sometimes the waiting is the worst. We all just want to take the steps we can to feel better. I am so sorry to hear about the damage to your parathyroid glands. You certainly have enough to deal with! I hope you update us of your progress. We are rooting for you and are here if you need to talk. All the best to you. Roxann K. Moderator

    2. Thank you so much. It does help to know that there are people out there rooting for me. Sometimes I do feel so alone on my journey. Unfortunately, I am still waiting on insurance to start the Tepezza treatments. It is so frustrating waiting. Sometimes I just want to yell out "Doesn't anyone care that I am losing my eyesight more everyday." I try to be patient and know that everything will work out in the end. Thank you for your support and I will keep you all updated. I see the eye specialist again on 9/20/22.

      1. , we are definitely here rooting for you! Contending with TED is hard, but you are not alone here! It is absolutely frustrating that it is taking so long to get your insurance approvals. I am sending you all the positive vibes that this gets sorted out soon. Please check back in after your appointment next week and let us know how you are doing! All the best, Sam S. (ThyroidEyeDisease.net, team member).

    3. So far it has work I will be starting my 4th infusion next week and my vision has gotten better , no double vision, no bulging, I feel better about myself. , I'm looking forward until i complete my 8 infusions. The side affects that I'm experiencing right now are muscle spasms, muscles hurt. Waking up in the morning with my eyes crossed until my eyes adjust takes about 5. To 10 mins.l. more frequent BM, and feeling exhausted. But, it will be worth it in the long run. Rather have side affects then lose my vision

      1. Thanks so much for sharing your experiences with us. I’m so glad to hear that you’re experiencing positive results so far. Please feel free to continue to keep us posted! Best wishes, Jessica H (thyroideyedisease.net, team member)

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