This has been one of my fears with treatments like Olumiant

This has been one of my fears with treatments like Olumiant.

Tiktok user @vivekapauline_ describes her progress.

Please watch this reel and share, we need to have realistic expectations.

https://alopeciaworld.com/video/this-has-been-one-of-my-fears-with-treatments-like-olumiant

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Views: 847

Comment by dreamscometrue on February 3, 2024 at 12:38am

This is so sad. The one thing I noticed with these treatment injections is that they are all in the same family of drugs; they are JAK inhibitors. So they're not new, just a new addition to the family. 

Comment by Larry Barbee on February 3, 2024 at 1:16am

I'm sorry for your set back. I hope you'll think of it this way, and not give up hope.

God bless and love,

Larry

Comment by Christine on February 3, 2024 at 5:05pm

I’m so sorry you are going through that pain of losing hair after so much regrowth. When most of my hair was gone I shaved the rest off mainly because of the heartbreak of seeing all my hair falling. My big concern with the JAK inhibitors is health related side effects. I never thought of this.

Comment by jennifer on February 4, 2024 at 12:58am

I’m so sorry for what this person is experiencing. To grow hair only to lose it again is so traumatic. My son has been on xeljanz for 1 1/2 years. He’s doing well, but he never fully grew back his forehead hairline. I have seen in my research, in webinars with experts, and have been told by our Stanford dermatologist that if you do not respond to one medication you can try another, or increase the dose to a more effective dose. 

Comment by SabineTawni on February 4, 2024 at 12:02pm
I agree that we have to. have realistic expectations with any of these new treatments. However, having realistic expectations is very difficult to do when Big Pharma wants over $5,000 a month for their new drug!! I would say THEY (Big Pharma) are encouraging those "unrealistic expectations". If I am paying that much money for a drug, shouldn't there be a customer-satisfaction/money-back guarantee? After all, Big Pharma wants to be part of the free-market system, so should they not have to play by rules of the free-market system too?
Comment by Vick on February 5, 2024 at 10:52am

I'm very sorry for that. I guess we need more research and a better treatment. Hope you feel good, no matter what. We must believe always that our hair will come back. Good luck

Comment by dreamscometrue on February 5, 2024 at 11:59am

Totally agree with you @Christine and @Sabine Tawni 

Comment by Marella313 on February 6, 2024 at 6:43am

I've been on Olumiant for 16 months now. After the first eight months, my dermatologist decreased my dose and I started to get a few bald spots. I was devastated! She has since increased my dosage to the 4 mg but only three days a week and 2 mg for the other days a week. Honestly, with new meds it's always going to be a wait-and-see. we absolutely need realistic expectations on any new medication on this crazy autoimmune disease. I'm so sorry she's going through this, but I'm proud she had the courage to post it. 

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