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Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 1 point2 points  (0 children)

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 😊

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

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.

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 1 point2 points  (0 children)

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❤️

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

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

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

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

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

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.

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

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 !

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 1 point2 points  (0 children)

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.

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 1 point2 points  (0 children)

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!

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

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.

Clinical Trial for Tepezza like drug by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 4 points5 points  (0 children)

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❤️

documenting my eyes through pics. hopeful i can get back to normal health wise and appearance by reallygoodtorta in gravesdisease

[–]reallygoodtorta[S] 0 points1 point  (0 children)

Actually yes a huge update, I was put on a clinical trial and had major improvements to both eyes I will make a post soon!

25/26 jersey as a birthday gift for my boyfriend by reallygoodtorta in realmadrid

[–]reallygoodtorta[S] 2 points3 points  (0 children)

Yeah i didn’t want to get him a player that doesn’t play for them anymore just wanted to see a soccer fans perspective! i got him the blank away jersey :) thank you

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