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Are you over 50? Im a 28 yr old woman so im hesitant but am so desperate for eye help :(

I'm doing okay. I have had a few minor flare-ups of graves eye disease, but they consist of just pressure behind the eye and puffiness. It hasn't been so bad to need to be considered for a third round of tepezza treatment (yet)

@@bluebongo wishing you only the best! I am afraid and decided to take lemon balm for graves not completely gone ,but manageable and lump went down a lot. Plus it seem to help with my eyes too

Most definitely! I've been through two rounds of treatment with Tepezza and definitely know I'd go through it again versus the surgical option. I am hoping they will create another cost effective medication to help with the symptoms and on going issues with Thyroid Eye Disease. I'm blessed to have set myself up a bit to be functional and work remotely, but I definitely struggled trying to work full time with those symptoms when they were bad. Glad you're getting relief and please let me know how it goes as you move forward with it too :)

So glad to hear that!!! Rock on :) I hope you continue to heal and have relief from Thyroid Eye Disease :)

Why hello!!! :)

I think it is still only in the US and parts of Europe, unfortunately. Hopefully it will be in more countries soon!

Because I have flare ups of the disease, it would not help to get the orbital decompression. Tepezza helped to reduce most of the side effects where I don't need the surgery at all. Even during a flare up I don't have the major proptosis I had with the eye disease originally. It was a personal choice to not get the surgery, but i know some people that found relief after surgery and tepezza treatment.

After two rounds of Tepezza infusions, (May-Oct 2020 and Nov 2021-Feb 2022) I'm doing better. The protrusion/swelling has gone down 4-6mm and I just have daily issues with randomly blurry vision, night time double vision, and a huge sensitivity to light....all which will likely be permanent until they find some cure for Thyroid Eye Disease. Hoping I won't have anymore flareups.

Orbital decompression therapy, mostly and due to the over bulging originally it would likely be a full face lift which sounded pretty miserable when the plastic surgeon explained it to me.

I hope that those will subside for you, I'm so sorry you're having those side effects to deal with on top of everything else. I hope it will help you, I noticed a big difference between the 2nd and 3rd doses.

I had a flare up with pain and blurry vision that got pretty bad. My neuro-ophthalmologist felt a second round of treatment would be helpful.

Sadly I still deal with double vision and major sensitivity to light, I have a hard time driving at night... even with my glasses due to the blurry double vision. Everything else has mostly subsided, though. My vision tends to fluctuate and will go from being great to being very blurry with no notice, but I find standing up and walking around helps alleviate it a bit. I think the double vision began to improve after the second or third infusion of Tepezza, for me. Wishing you the best in your journey!

I just got my second infusion Monday and I keep getting headaches and pressure in my eyes and light sensitively do you get that to?

@@isabelpicaso2336 Yes, I had my 3rd infusion this week. However, after the 2nd, I had severe migraine headaches too, flatulence/ loose stools, dehydrated skin, slight eye pressure, and itching in my right eye. Now, I no longer have headaches. So, I will tolerate the mild side effects rather than discontinuing treatment and deal with eye protrusion. But I hope Tepezza is not one of the drugs that cause severe adverse reactions or lead to class-action lawsuits 🙏😇💝 🛐 Supportive Channel.🙌 P.S. My 👁️ has receded 2mm after the 2nd infusion, hope all goes well by the 8th one and some of the side effects go away.

I think it depends on the individual getting the care/medication, as well. It may not work the same for everyone and I am so sorry you had to go through that. You should definitely reach out to Horizon's CEO and let them know your experience with this and the lack of communication. I've not had the same experiences through both of my cycles, the reps have been very helpful and processed the program to help me with the out of pocket expenses pretty quickly. I do hope I don't have more flare ups of TED after this second cycle is done, but we shall see! I hope you feel better!

It’s been almost 4 weeks now after my first infusion and the ringing in my ears is still present. Also after letting Tepezza representative that I might not be doing another infusion he never replied or reached out to me since.

@@nv_laf736 I received the same treatment, after telling my Horizon Rep my problems with my treatments. Coming up on 6 months since my last infusion, and still have ringing in my ears.

I'm doing much better, though I had to go through a second round of Tepezza infusions due to a flare up 7 months after I finished the first round. So far, so good!

Thank you so much! Just finished my 16th (and hopefully final ever) dose/infusion of Tepezza. My mom's cancer is in remission and for the most part we are doing great. Thank you so much for the prayers, we are all truly blessed! :)

@@bluebongo That is awesome!!!! Congrats to you and your mother!!! I finished my last Tepezza treatment #8 in Jan. I honestly want to do 4 more treatments but not sure if they will approve it. My eye is still a lil puffy but alot better than before.

@@cljmcclain I hope they do approve it. It seems like we all have continuing issues with Thyroid Eye Disease post Tepezza infusions. Hope that puffiness goes down for you asap!

@@bluebongo Thank you! I really appreciate that!

My first 8 infusions was covered by a state health insurance plan. I was just approved for another 8 infusions and my current private insurance is Blue Cross Blue Shield. Should be starting this second set of infusions in the next week or so.

@@bluebongo good luck with the BCBS as they routinely deny this in my region, and we pay about $900 in premiums monthly

@@xev1435 Tepezza offers a "co-pay" program that helps patients cover the out of pocket costs between their deductibles and out of pocket maximums. I'm starting my second round of treatment this week and had no trouble getting it approved with all the documentation they needed.

@@bluebongo ok, thanks for the advice. keep well!

All medications or treatments are going to have side effects of some sort. I did not personally experience many when undergoing initial infusions of Tepezza last year, beyond being tired all of the time. It will interact with each person differently and you should not let that dissuade you from finding a medication, treatment, or procedure that can bring you relief from thyroid eye disease, though you should definitely talk about those concerns with your doctor that would prescribing Tepezza to see what may be best for your own scenario.

It’s pretty bad and no doctor can tell you how long they will last if not permanently! I completed my first one and I don’t think I’ll be having any more. I pray that side effects will go away as I read another comment that they still have them after 4 months of their last one!

So when I initially was diagnosed with Thyroid Eye Disease "officially" in May 2019, the options at that point were corticosteroids during the active phases and surgery. Because Thyroid Eye Disease will be with me forever (I had my Thyroid totally removed in Nov 2019) and I will continue to have flare-ups and have the disease go from active to inactive phases, I am skeptical of undergoing such an invasive surgery when this disease will just continue to be a problem. As well, it'd be likely that I may need surgery again and again. Most insurance companies prefer the surgical and steroidal methods as those are the only peer reviewed and documented treatments, until Tepezza hit the scene in Jan 2020 for prescription. I was able to get Tepezza for the first treatment (8 infusions) from May-October 2020 and was fine without any flare-ups until May 2021 and now I am on steroids for the flare up until I can start Tepezza for a second round of treatment within a week or two (I will post video updates before and during this second phase of treatment). Surgery works well for some, but I don't want to go under the knife when I know I will have recurring issues with this disease. I'm grateful Tepezza helped reduce the severity of the disease quite a bit and this is the first issue/flare up I've had... so Tepezza literally saved my vision and life in giving me the independence I needed to get back to work and being myself again. I'd rather go through multiple infusions of Tepezza than go under the knife, but that is just in my own situation and feelings about it.... I know I've talked to many that have been through multiple surgeries for TED and prefer that to taking medications, lol. I think this is entirely a personal decision that you should research and consider going forward as Thyroid Eye Disease don't ever really "go away" but will continue to have active and inactive phases that will require some sort of treatment. I have adverse reactions to the steroids and can't be on them for more than a few weeks, so its been rough being on them the past 6 weeks or so and having to continue them until I can start Tepezza again.

Your insurance didn't cover all 8 infusions? Typically the insurance and Horizon (Tepezza Manufacturer) will get the full 8 infusions approved. I am so sorry if they stopped your treatment after the first dose, that is just ridiculous!! I hope they can help get you back on track to get all 8 infusions for treatment soon!

@@bluebongo thank you. They approved then my doctor start treatment but after 1st dose then they denied for 2nd dose they said it’s very expensive. My insurance is ambetter . What’s your insurance?

@@jumanachowdhury7122 My insurance was through medicare the first time around. I had to appeal the decision for treatment twice. I would definitely appeal that decision from Ambetter and tell them you need it, you are already under treatment for it and get documentation from your doctor that you've tried oral steroids and those didn't work (if that was the case - my insurance needed me and my doctor to prove that prior treatments for thyroid eye disease were not successful, including prednisone tablets). I hope you appeal their decision and fight them on it, because there is NO other treatment available beyond steroids and surgery currently and most insurance companies will sadly pay for surgery than Tepezza because Tepezza is so new and much more expensive than surgical options. Good luck!!

@@bluebongo thank you so much. My doctor and horizon worker they said they are still trying.

Thank you so much! I'm so stoked to hear you are getting relief from the treatments. :)

Most definitely! I hope you have a great amount of relief from TED soon, it's such a difficult disease to live with.

Yes, I had my thyroid removed in November 2019. Thyroid Eye disease set in around New Years 2018 after doing the Radioactive Iodine Uptake Treatment/Therapy that was supposed to kill my overactive thyroid. Instead, my thyroid become even more super active and the disease spread to my eyes (the muscle tissue around the eyes is a lot like that of the thyroid and thus it attaches itself to the fat/muscle tissue around the eyes). I've been on thyroid replacement meds, but still have never felt quite right since having my total thyroidectomy in late 2019.

Aimee, I would not mind that at all. I can also recommend the best and one of very few Neuro-Opthamologists in Phoenix (she is the beeeee's knees for sure!). I'm so sorry it has taken me so long to reply to your comment, but I hope you started your Tepezza treatment and weren't too discouraged from it. Honestly, I am grateful to have had Tepezza versus the surgical treatments for TED. I'd be interested in chatting about your experiences and how you've been faring in your own journey. I also do a lot of kayaking and axe throwing with a group of friends pretty regularly if you are ever down for adventures, lol. You can email me flynhighnova@gmail.com anytime. :)

Yeah, I had my thyroid removed in November 2019. Between the their eye disease ave balancing out thyroid replacement medication, I was a mess. I'm glad that the thyroid had mostly balanced out, I wish I cuff say the same for the thyroid eye disease .

I would say that after the first 8 infusions my vision was better and all symptoms of the thyroid eye disease subsided for 7-8 months until a few weeks ago. The bulging that I am getting currently is only in the lower part of my eye lid and is mild in comparison to the terribly heavy bulging all around my eyes that I experienced before Tepezza. Wishing you the best in your treatment and that you are feeling better! I know after the second treatment I noticed a major improvement! :)

@@bluebongo ok great to know I really hope this treatment works for me as well. I will keep you posted on how my second treatment goes. Can’t wait to see a difference in the eye bulging. I only have one eye that’s bulged the other one is fine. But can’t wait to see what my outcome will be. Thank you so much for sharing your experiences.

So sorry it took me a bit to get back to you. I had some mild heating loss before all of this started due to working in aviation for many years, but I didn't notice any issues with my hearing during our after the Tepezza treatment. The only side effect of note is being exhausted/tired.... definitely can't be overdoing after each infusion, gotta let your body rest.

I'm on my 3rd infusion and I noticed hair shedding, missed period, headache and tiredness.

Me too

I do try to, but definitely don't update as much as I'd like. Working on it though :) Just posted the latest update after 16 rounds of tepezza... oof!

Thank you! The tepezza treatment really helped me to be functional again, but Thyroid Eye Disease will never go away and will flare-up again. I hope there will be more long-term treatment for this disease in the future.

@@bluebongo Trisha so tepezza didnt work for your eyes? I got approved and should start next month.

@@cljmcclain It did work, very well. But I got a flare up of eye disease 6 weeks ago. Tepezza isn't a cure for the disease, but it is a very effective treatment.

Thank you for the update. Are you still dealing with graves disease also?

@@cljmcclain Yes I am. I had total thyroid removal and still have Graves disease and Graves Eye Disease.

Hopefully soon!

After the first 2 infusions my general symptoms from Thyroid Eye Disease and the swelling subsided. Though 8 months after treatment my thyroid eye disease became active again and I am currently working on getting a second round of Tepezza treatment for the flare-up. Will hopefully be starting this second round of treatment in a few weeks, if all goes well with the insurance and payments.

@@bluebongo do you have to take 2nd round??!!!another 8 months ??!!

@@jumanachowdhury7122 My eyes do bulge slightly since the flare up started in May 2021 (about 6 weeks ago). I will be started a second round of treatment for Tepezza in a few weeks (July 2021). May have to continue doing infusions in the future if it flares up again.. I am a guinea pig for seeing how this may work for people with long term thyroid eye disease. Unfortunately, until they find a cure for TED we are all stuck hoping for and finding any "treatment" that will work and help us to be functional or as functional as we can be.

It was after my second dose/treatment of Tepezza that I began to notice better vision and less trouble with TED side effects. Unfortunately Tepezza is not a cure, it is just a medication to help treat TED. There is not a lot of information about the long term efficacy of Tepezza yet as it is a new medication. I finished my final dose/treatment of Tepezza October 7th, 2020 and since then have dealt with changes in my vision daily. I notice that when my eyes are tired the blurriness and double vision are worse, but I can still see (though I do not drive when I am tired or have these vision issues). In general, I can see well with my prescription glasses and don't have major issues with my vision beyond the mild blurryness and double vision when I (or my eyes) are tired. I hope that helps!

@@bluebongoThanks for your help!How are you eyes bulge now？After 8 tepezza treatments, how many millimeters did your eyes go back? Do you know that most tepezza users are cured? Are the side effects terrible? My doctor asked me to do a hearing test, and he said it would affect my hearing. I am very worried about a problem, that is, I still need surgery after using tepezza.

@@maomao4835 Sorry for the late response! The bulging in my eyes went away between the second and third Tepezza infusions. I finished the treatment in October 2019 and have only minor issues with my vision from time to time. Blurry visions and double vision come and go, but I there has been no bulging since finishing the Tepezza treatment. The worst side effect I noticed during the Tepezza treatments was being tired all of the time and weak. It doesn't cure the thyroid eye disease, but it does help lessen the major side effects of the disease. The treatment did not effect my hearing, the only major side effects I noticed were the severe fatigue and weakness throughout treatment.

​@@bluebongo thanks for answer. I am using a translation tool. Some expressions may not be so accurate. I have completed 2 tepezza infusions and found no help and no side effects. I will wait for the next infusion to see if it works. why your Blurry visions and double vision come and go? What does your doctor say about this, besides tepezza, does the doctor give you other medications? I have same problem , blurry vision after surgery.

I am not sure what the cost is without insurance. But you should keep trying to get them to cover it as it is expensive, I know in the US the cost for treatment is about $240,000.

Omg !!! So expensive...

I just finished my 4th and the bill is $110,000. Yes very expensive

Hi KAT ! Do you know prices for surgery

@@tracydang9642 hi I'm not sure. I guess it depends on the severity of the disease as well. I didn't have surgery so I don't know.

My insurance covered it at 100 percent, after a few months of denials and appeals. The cost for the entire treatment is above $200,000. I think the need for decompression surgery depends on the person/severity or if it causes more issues over tine.

Thank you so much for your response.

@@bluebongo Wow, you must have great insurance. Did your doctor help get it through? I am not suffering from the disease anymore but I have the effects of the eyes and lower cheeks (very depressing) I really want to get this treatment. Had you met your out of pocket and deductable or did they just approve it? Sorry to ask so many questions.

@@antslife1089 I didn't have a deductible since I was on state insurance, at the time. However, it was a tough fight as they denied it a few times and I had to appeal it. My doctor was more then helpful in providing all the documentation needed and even requesting a peer to peer review, but they denied that too. They did eventually decide to approve it after a few months of back and forth. No worries on the questions, that is why I posted all of this stuff!!

@@bluebongo Thank you so much.

If you are still having issues with "active" thyroid eye disease, Tepezza could be an option. But there isn't any medication from inactive thyroid eye disease, yet. I am hoping they will have more medications for people with this disease whether active or inactive, sometime soon!

@@bluebongo I can’t live with this bad disease anymore I really hope my insurance will approve this treatment I’m really glad you got over it 👏🏻

@@rogehkoubti6593 I hope you do get treatment, I am sorry you've had to go through al of that for so long! Best wishes in your journey to getting better!

@@bluebongo Thank you for sharing your experience!

You should follow up with an ophthalmologist or neurologist or your primary care doctor to let them know that you think you may have symptoms of thyroid related eye disease. They will run some blood tests and check your thyroid first, but getting treatment will help those symptoms if you're having the same stuff going on! I still have some light sensitivity and a bit of blurry vision, but the Tepezza helped the major side effects and has given me the ability to at least function again with far fewer issues from the thyroid eye disease. I still have it, but a lot of the issues from it have been quelled. :) I hope you're able to get help and feel better, it is hard living with those issues!

I know it effects everyone a bit differently. I am so sorry you had an adverse reaction to it, I know a few people I have talked to about their experiences were much like that where they couldn't continue it. I am hoping more treatments will be available for people with TED soon in both active and inactive stages. It really is a debilitating disease.

Can you guys share your side effects please and or experiences? Thank you

I actually am starting a new job next week, so I hope I will be able to keep the TED at bay so I can see well enough to do my job! Thank you for watching!