![Trisha E.](/img/default-banner.jpg)
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Trisha E.
Добавлен 25 окт 2011
Random mumblings on video!
Видео
Updates: T3 and T4 Meds, Allergies, Thyroid Disease and Thyroid Eye Disease! Oh my!
Просмотров 139Год назад
Just updates on where I'm at and how I'm feeling post Tepezza.
T3 and T4 replacement therapy for graves disease and total fire it act to me!
Просмотров 45Год назад
T3 and T4 replacement therapy for graves disease and total fire it act to me!
Final Tepezza Infusion Update (16 doses total over two treatment periods)
Просмотров 7082 года назад
Finished up my second round of Tepezza treatments Saturday 2/12/22. Glad it's done, the nurse sort of rushed the ending and I wound up bleeding a lot after.... but all in all, just glad it's done! :)
Current State of Being (Post Infusion #6)
Просмотров 1592 года назад
Just had my sixth infusion in the second round of Tepezza treatment... been a while since updating, so here we are!
Second Round of Tepezza Infusions and Pandemic Stress, what fun!
Просмотров 2893 года назад
Second Round of Tepezza Infusions and Pandemic Stress, what fun!
Tepezza as a recurring treatment for Thyroid Eye Disease?!?
Просмотров 1,1 тыс.3 года назад
Just updates. Going through approval to get a second round of Tepezza infusions to help with flare-up currently.
Thyroid Eye Disease Flare-Ups....what fun!!
Просмотров 1733 года назад
Thyroid Eye Disease Flare-Ups....what fun!!
This Pandemic Thyroid Basket Case of a Life!!!
Просмотров 1283 года назад
I've been neglecting any updates and I am so sorry! Been working through more thyroid issues, but the Thyroid Eye Disease (TED) is so far a distant memory after finishing Tepezza treatments in Oct 2020. Feeling good and trying to get out of this pandemic slump!
One month post Tepezza treatment!
Просмотров 5573 года назад
Recovery and updates since finishing the last infusion of Tepezza a month ago!
Final Tepezza Infusion Today!!! Infusion #8!! Yay!!
Просмотров 6413 года назад
I finished my infusions and treatment with Tepezza today. It was bittersweet, but I'm grateful for the medication improving my quality of life and helping me get back to being independent again.
Terribly filmed maiden voyage/review of a Sevylor QuikPak K1 Inflatable Kayak!
Просмотров 1 тыс.3 года назад
Terribly filmed maiden voyage/review of a Sevylor QuikPak K1 Inflatable Kayak!
Bariatric surgery and rambling...oh my!
Просмотров 385 лет назад
Bariatric surgery and rambling...oh my!
Bariatric Surgery and Vitamin Deficiencies
Просмотров 665 лет назад
Bariatric Surgery and Vitamin Deficiencies
Hyperthyroidism and graves opthamology for then win!!!
Просмотров 935 лет назад
Hyperthyroidism and graves opthamology for then win!!!
How are you doing??? How’s your eyes??? Pleaee do an update if you can.
Thank you for the good information
In my country, Tepezza is not available. So, facing steroid treatment I instead chose to go on the keto diet, trying to not exaggerate the intake of fat and dairy. One year on, the eye disease has not developed much, so I`ll just keep going as for me there is really no other solution. It`s hard, but it is also a question of getting used to it. Only time will tell if my diet helps..
Hun do face yoga itll tighten ur lids right up
Do face yoga
Here are some of the side effects I had, many have NOT gone away. Tinnitus (possible hearing loss (waiting to be tested), INTENSE muscle spasms and cramps, De-laminating finger nails, painful erections, loss of energy. My eye bulging was reduced around 70% to be fair, and no longer water all the time. Still sensitive to the sunlight and permanent double vision (corrected with special glasses).
Are you over 50? Im a 28 yr old woman so im hesitant but am so desperate for eye help :(
Your eyes look normal.
How are you doing?
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
I have Thyroid Eye Disease and allowed the VA to try the standard (8) $40,000 Tepezza infusions. The side effects are starting to outweigh the minor benefits of the treatment. The MFG (Horizon) won't help you at all. The side effects are outside the realm of my eye specialist. I have just reported all my problems to an interested FDA and just found an attorney with more sympathy than the MFG.
Glad you put together these videos :) I get the same sharp intermittent pain on my left. Sometimes on my right. On TEPEZZA #7 for TED. Frequency has drastically decreased/improved.
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 :)
#8 and final TEPEZZA next week. Has helped a lot.
So glad to hear that!!! Rock on :) I hope you continue to heal and have relief from Thyroid Eye Disease :)
Hello Gorgeous!!
Why hello!!! :)
Mama I m suffering from same disease how I can get this teppza I m from Pakistan
I think it is still only in the US and parts of Europe, unfortunately. Hopefully it will be in more countries soon!
I have another question that cam to my my mind, and I hope this is not an uncomfortable question. sorry if so,. I am interested because I am experiancing the same thing and thinking out loud I guess. So, I have watched all your videos and how the treatment reduced the effect of TED on you by at least 80%. which is great. but some symptoms still are there. as you mentioned. e.g.,double vision, etc.. However, as you mentioned the treatment is a treatment and not a cure. if you're in the stable phase now, and I think you look great not that you need anything. but to tell you the truth, still there's a maybe 10-15% in any TED patient after the treatment i n the face compared to before TED. Thus, why did you avoid orbital decompression or minimal reconstructive surgery for the purpose of maximizing the effect after the medicine so you get again back your look 100% and remove all the symptoms 100%. I know the invasiveness of the procedures is one factor but don't you think the outcomes are worth it?
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.
How is it going now?
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.
What surgeries are you talking about getting?
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 couldn’t get home infusions sadly. Just started Tepezza and have had some bad GI flares three days following the first one. Fatigue, nausea. Little hives here and there. Just nervous for my second one, since i’m already having side effects.
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.
Hi, thanks for sharing your journey. What made you decide to do a second course of tepezza?
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.
glad you finished all the doses. I hope you continue to feel good. I have been diagnosed with TED and now finished my 1st tepezza injection. my worst symptom is the double vision. when did the double vision improve for you?
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!
Nice video! I want to thank #DrSusanOsduwa for her marvelous work in my life, after several years to find a way to get rid of this disease, I was recommended to contact #Drsusanoduwa by my doctor, and I was able to get my cure and now I am 💯 cured from diabetes.
Thank you for sharing 🧡
Thank you for this! You look great, I’m praying your resolved symptoms remained. Please keep up with the updates, they give some of us who are about to start treatment something to look forward to
Your eyes look great. I'm on my 2nd Infusion. And the only side effect is a headache after each treatment. Unfortunately, I was diagnosed with Graves Disease 2 years ago, and the onset of TED was sudden in my right eye, about 4 months ago. So far no major complaints. God bless us.🙏
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.
Looking great, and thanks for the update.🙏
I hope the second round helped your flare up Trisha! On the other hand, this is the perfect advertisement, that Tepezza only works temporarily! Not to mention the side effects that come with the treatments, which not everyone will get,,, ymmv But I'm over 4 months with bad side effects that have not changed, even though I was told by Horizon the side effects would be temporary!! Think twice about starting this medication, because when I told the Rep from Horizon about my side effects after 4 infusions, they washed their hands of me saying this will our last communication???? ,,,,,,,Zero Accountability!!!!
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.
Thanks for posting your videos. Good luck in your journey. I start my Tepezza treatments on Monday. I am doing something similar with the youtube videos for this.
How are you doing now?
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!
I'm so sorry to hear about your mom and your flare up. Praying for you both🙏❤
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!
not covered by BCBS
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!
I’ve read about horrible side effects and doesn’t seem worth it to me. Would love to hear from anyone about their side effects before I start Tapezza in a couple of weeks please!
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!
Did you not want to try orbital decompression surgery? I have thyroid eye disease myself. I was just curious if you had considered it?
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.
I did one dose . Then my one eyes became too much swollen looks like one is very big another one is small. And 2nd dose I can’t take because my insurance denied!!
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.
Appreciate the video and Tepezza therapy patient feedback. 2014 I had my full thyroid removed. I just finished my third infusion and am experiencing some relief. In regards to your recurring treatments, that might be a possibility for me as a patient too. Hold on, stay strong and thanks for uploading this video Trisha. : )
Thank you so much! I'm so stoked to hear you are getting relief from the treatments. :)
Thank you for sharing. It truly does help. I just started Tepezza and have had some side effects but I’m hopeful for the outcome. Glad there’s a good community of us for support!
Most definitely! I hope you have a great amount of relief from TED soon, it's such a difficult disease to live with.
Have you had your thyroid removed?
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.
Hi there! Thank you for sharing your experience! I recently was approved for Tepezza and am having a hard time making a decision if I should try it out. It’s such a new drug that it’s scary! I’m glad to hear that you had some relief... but then discouraged to hear that it’s not necessarily a one time thing and there can be flare ups even after treatment. Thank you for being so transparent with your journey! I’m also in Arizona & I know this is a shot in the dark but if you’re willing to chat over phone or meet up for coffee to chat I would be most grateful!
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. :)
I am so sorry to hear that Trisha. I hope you will feel better soon. Did you also have your thyroid removed??
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 .
Hi I’m getting the infusions done as well I will be going on my second one on the 27nth. I will like to know what about the eye bulging has it come back or is it just a flair of the swelling on the eye ??
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.
Have you had any side effects from it? I’ve read 65% suffered from some type of hearing loss.
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
Hope you will update again soon.
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!
Your eyes look good!
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.
I wish there's a tepezza treatment here in Philippines
Hopefully soon!
Can you have an update of your current eyes? How is the bulging? Was all side effects disappear after months?
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.
Hello, thank you for sharing, and hope that more TED patients can share their experiences. My English is not very good, . can I ask after you finish 8 treatments of tepezza, have you been completely cured? Is your double vision problem solved? I have already injected tepezza once, and I don’t feel anything right now. I am wondering if tepezza cannot be completely cured TED ,will we still need surgery ?
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.
Hello Trisha , so sorry my English not well, I got TED too, my insurance didn't pay for Tepezza, can you tell me how much it will cost you? Thank you!
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.
How much was it out of your pocket? Why do ppl that had the decompression surgery it comes back?
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.
I have the same situation with light sensitivity and i have been diagnosed with this disease 10 years ago. Is it possible to get Tepezza treatment if if i had it for long time ?
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!
were u having sensitive from lights. I too have same kinda situation were my under eyes sunken, heavy sensitivity to light, eye irritation . can i take similar medications. Ive been affected with this situation from 2001 mid . Ur response will make my life better.
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!
Hey the side effects started on the 4th infusion not going to finish after 2 that I know it changed right back to ore- Tepezza I was so pro being 24 years TED and they fail to tell you that it has been reported failure so I wud imagine that I would have gotten dinner after being screwed
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
Wow just got to the part where you said it effected your hormones? I wonder how it’s effected mine. Hope your able to work again as a flight attendant or find something else you enjoy.
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!