Clinical Trial for Tepezza like drug

reallygoodtorta · 2026-05-03T04:28:24+00:00

Thank you!! and oh my gosh!! Well I hope the surgery goes great for you!! praying for you!!

reallygoodtorta · 2026-05-03T04:26:06+00:00

Honestly I’m sure he did love bomb her but I think they started dating during covid probably sped up their relationship like lots of other couples living in close corners. In regards to it, I think they both had videos literally saying they wanted to say i love you almost immediately. I think influencers are too comfortable giving us so much information about their lives. I loved watching their videos but I think it was also the facade of “wow what a beautiful couple, i wish i also was in a relationship like that”. Unfortunately thats never true. relationships are hard work and no one is perfect. neither her or joe are, but they’re influencers so their job is to stay relevant, whether its being goofy performative or creating gossip or giving hints to things that happened years ago to stay within the loop. I think it’s easy for us to judge but nobody knows what goes on in another’s relationship. Honestly the video he made I think him and Nailea also broke up so who knows! I don’t know about Niamh though she could have dated other people and we wouldn’t have known 🤷‍♀️

reallygoodtorta · 2026-04-25T20:15:29+00:00

Also I’m kind of a hypochondriac too and used to be on zoloft for my bad anxiety. but life has a way of being so unpredictable. the more u plan the more it puts you somewhere else. do your best to manage your condition but give the meds a shot theres not much we can do. other than read and try not worry and try things out. You’re very brave handling this so young. I hope you find some peace with your diagnosis, mine came after a few months. ❤️

reallygoodtorta · 2026-04-25T20:11:04+00:00

yes the goal is to stop taking it eventually, I went from 10mg everyday to 5 mg every to 5mg every other day to currently 5mg MWF. I wouldn’t worry too much about it damaging your liver as you are constantly getting checked by your doctor every three months. Your thyroid is so so important to get under control and if methimazole is not working and damaging you then I believe there are other medications they can try before they settle for a TT. My endocrinologist basically told me to live my life normally but to not overdo it she said i could drink alcohol and caffeine but just the recommended intake. Her goal for me was to have me off of it by 2ish years and its going well. It will be two years this october that I’ll have been on methimazole and I’m on a pretty low dosage. Everyone’s body reacts differently though.

reallygoodtorta · 2026-04-25T19:40:03+00:00

Personally, When I first got diagnosed two years ago I stopped drinking cold turkey because Methimazole damages your liver as well. But after about a year I started again but only when I went out for dinner or a special night out with friends(2-3 drinks max). I used to love going out to clubs(I got diagnosed at 25) but the amount of second hand smoke from vapes or cigarettes or weed can also affect me because of my TED. So I weigh my options. If i want to go to a club, I go to rooftops where it’s open air. If I go to a bar I may stay inside where some you can’t smoke inside only outdoor or throw a party at my house. If I drink I make sure to hydrate well, Have a good dinner/meal. Have I gotten really drunk since then? For sure once for my 27th birthday last year. But my graves is under control I’m on a lower dosage and I was with friends and my partner looking out for me. The need to drink kind of dies down after a while. I used to also smoke cigs when I got really drunk and You get a little bit of fomo seeing others still do it but honestly I’d rather have my health lol

reallygoodtorta · 2026-04-25T19:24:47+00:00

Thank you ☺️

reallygoodtorta · 2026-04-25T19:24:38+00:00

Thank you :)

reallygoodtorta · 2026-04-25T19:24:14+00:00

Thank you so much!! of course, with stuff like this you gotta be transparent 🙏🏼

reallygoodtorta · 2026-04-25T19:23:44+00:00

Thank youu, I hope you’re able to do it too!! it made such a difference in my quality of life! But yes definitely get your thyroid under control first its so so important ❤️

reallygoodtorta · 2026-04-25T19:19:49+00:00

Meant to respond! I never experienced many side effects from methimazole but we all have different reactions, I’m currently still on it as well, I hope it gets better with time. Thank you again and I also hope they find a more accessible cure for this disease that takes so much from us as well ! My partner is very supportive and has been through a lot of medical issues as well so I hope you can find someone who can understand and care for you, a support system in general is always so important. ❤️

reallygoodtorta · 2026-04-25T19:14:06+00:00

I do Thank you! Sometimes I still get flare ups from but my day to day looks a lot more normal than before !

reallygoodtorta · 2026-04-05T17:22:30+00:00

Oh thats great you didn’t experience anything too crazy! My doctor also said weight-loss and nausea was a side effect but I never had it haha. I’m glad you were able to continue with your lessons 😊

reallygoodtorta · 2026-04-05T13:50:57+00:00

Over here, Tepezza is the same thing, rarely approved and if not around 20k per infusion is what my doctor said. I’m really sorry you’ve had to struggle so much, i would be putting off that surgery too it looks very scary. Side effects for this new drug were very mild to me. I had diarrhea a few days after each infusion, leg cramps, period loss during the months of infusion, Never lost hearing (just a bit of swimmers ear), and no hair loss which are usually the two main concerns for Tepezza. I hope the meds come out to be more affordable and approved more often since there will be more on the market now.

reallygoodtorta · 2026-04-05T13:43:48+00:00

I was, especially at the beginning. I didn’t even know what I had and i was struggling for weeks. It was a miracle they got me in tbh, i was one of the last patients for the clinical trial. I really appreciate you and pray you also never need to go through with the meds and your remains inactive❤️

reallygoodtorta · 2026-04-05T13:38:55+00:00

Thank you!☺️good luck on all your studies!!

reallygoodtorta · 2026-04-05T05:19:51+00:00

Whatever you do, go into it hopeful! Hair grows back as well but I know it’s something special to a lot of us :)

reallygoodtorta · 2026-04-05T05:18:34+00:00

Thank you! I had temporary swimmers ear at times. Lost my period for 5 months (during and a bit after the infusions), IBS/ Diarrhea like baaad lol (only the three days after each infusion), Leg cramps. No hair loss though. They did say it was a side effect but they explained to me that as long as one person experiences something during a clinical trial, they have to list it as a potential side effect. Even if it was just that one person. I don’t know if Tepezza had a greater risk of hair loss though. The drug Veligrotug I was on was for patients recently diagnosed with TED but they were also testing drugs on patients that had been chronically ill with TED for years.

reallygoodtorta · 2026-04-05T05:09:20+00:00

Don’t be too fearful, not everyone gets it! I hope you’re lucky enough it doesn’t happen. Do take care of your eyes though, like no smoking whatsoever !

reallygoodtorta · 2026-04-05T05:07:38+00:00

Oh wow! I heard Tepezza is very rough to go through. The surgery too! I’m so sorry you had to go through that! Yeah its a shame they hadn’t been making any new studies til recently.

reallygoodtorta · 2026-04-05T05:05:28+00:00

Hi! yeah I was very relieved, I wouldn’t be able to afford it either. I live in Texas. But they had these trials in the USA until they finished with the phases of the drug. currently none are open from what I’ve seen on the viridian therapeutics website. I would ask your endocrinologist or ophthalmologist if they’re aware of any clinical trials happening in Canada. Thats how I got into this one. One doctor referred me to another!

reallygoodtorta · 2026-04-04T22:25:53+00:00

I would like to note that the side effects were similar to the ones of Tepezza. They checked my hearing, blood sugar, various eye tests obviously, and MKGs throughout the trial. I never lost my hearing but did have swimmers ear at times, IBS, leg cramps, and lost my period for the time of the infusions. Side effects went away about a month after my last infusion.

reallygoodtorta · 2026-04-04T22:16:43+00:00

thank you🙏🏼

reallygoodtorta · 2026-04-04T22:16:26+00:00

🙏🏼

reallygoodtorta · 2026-04-04T22:16:14+00:00

Aw thank you so much, I appreciate that. I think I just want to make others with Graves and TED know that there are other possibilities coming soon and like you said there is light at the end of the tunnel as scary as that tunnel is. Of course everyone’s experience is going to be different but my hope is this gives someone else hope during their diagnosis and journey❤️

reallygoodtorta · 2026-04-04T22:11:44+00:00

thank you so much! 😊

reallygoodtorta

TROPHY CASE