Oluminant Aloepecia Community Watch – The Good, The Bad and The Ugly!

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Oluminant Aloepecia Community Watch – The Good, The Bad and The Ugly!

We have been hearing A LOT about the new FDA Approved Lilly and Incyte's OLUMIANT® (baricitinib) drug.
We would like to start a discussion here on Alopecia World with people who have tried it, are trying it, or considering trying it.  This is a place you can discuss both success as well as side-effects and objections to trying the drug.  Hoping this form will help people with alopecia make more informed decisions.
 

A place that hopefully we can get real users’ comments and reactions.  Maybe uncover some things that your doctor never told you about the drug, good or bad.  Upload your photos, videos, anything you think the community should know about Oluminant.

 

Or perhaps you just want to keep your eye on Oluminant, let this be the place.

 

JOIN THE GROUP TODAY TO KEEP UP ON THE DISCUSSION

 

According to Lilly, ” Eli Lilly and Company (NYSE: LLY) and Incyte (NASDAQ:INCY) announced
 that the U.S. Food and Drug Administration (FDA) has approved OLUMIANT® (baricitinib), a once-daily pill, as a first-in-disease systemic treatment for adults with severe alopecia areata (AA), available as 4-mg, 2-mg and 1-mg tablets.1 The recommended dose is OLUMIANT 2-mg/day, with an increase to 4-mg/day if treatment response is inadequate. For patients with nearly complete or complete scalp hair loss, with or without substantial eyelash or eyebrow hair loss, consider treating with 4-mg/day. Once an adequate response is achieved on 4-mg/day, the dosage is to be decreased to 2-mg/day.1 OLUMIANT is not recommended for use in combination with other JAK inhibitors, biologic immunomodulators, cyclosporine or other potent immunosuppressants.”

Members: 53
Latest Activity: 20 minutes ago

Discussion Forum

Too Old :-)

Started by tandelor Dec 26, 2022. 0 Replies

OK, I'll start since I'm probably someone with Alopecia for the longest time (over 50 years:-) I tried to get in the trials early on but the screen said I was too old and had alopecia universals for…Continue

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Comment by jackie 1 hour ago

I have been on Xeljanz for RA since May 2019 and my hair, eyelashes and eyebrows have grown back. At first my hair grew back a bit thicker and curly but has settled down to my previous baby fine thinner condition. But I am thrilled to have any! My doctor would like me to change to another treatment for RA for better effects, but is working with me by adding a few other prescriptions to manage the RA so I can keep the hair I now have. My cholesterol level increased while on Xeljanz but I think other changes are due to my RA.

Comment by Sam 8 hours ago

I am 52, diagnosed with diffuse AA on biopsies at two different times at age 37. I also happen to have RA ….. lucky me huh :) 

I took Xeljanz a couple of years ago and developed dizziness, and then nausea with Rinvoq, because insurance wouldn’t cover Olumiant. Finally started olumiant 3 months ago, sadly nothing so far on the scalp, RA is controlled pretty well. I intend to give it a 1 year trial before I let it go. 

Comment by Megan_6312 10 hours ago

I have been on it since August and I have had relatively good results with not any side effects I mean I’m definitely getting sick more but I expected that with an immune suppressant but my dermatologist said 15% has grown back and that’s the most I have had since I lost my hair at 16 and I’m 23 now so maybe I will get my life back I guess we will see also the company that produces the medicine Lilly has a bridge problem that helps it be affordable so if insurance covers it, it would only be 5$ a month but my bcbs does not so I pay 25 a month.

Comment by JUDITH on January 9, 2023 at 6:44pm

Happy New Year everyone I started the drug 4mg in August I  recently stopped taking it.  I had a blister in my nose that would not heal and my cholesterol went up, they also found two lumps in my breast that my doctor is keeping an eye on.  I would love my hair back but not if it's going to risk my health and life.  My hair was starting to grow but at what cost.  Please be Be careful with this drug.

Comment by Margaret Brennan on December 31, 2022 at 11:10pm

I have had AA since I was about 18 months and AU since I was about 20. I am now 78. At the NAAF Conference in JUly I got to speak to the researcher and his wife from Yale who are the lead folks on Jax Inhibitors.  He told me he thought a combination of the Jac plus Minoxidil would grow my hair after all these years would work. I would love to try it.

Comment by Joserid on December 29, 2022 at 6:40am

All the best Erika, good luck!

Comment by Erika on December 28, 2022 at 9:17pm

I am excited to hear about peoples experiences with Olumiant.  I have had alopecia for about 35 years.  I started Olumiant 2 months ago at 2 mg.  I have had a bit of eyelash growth that I did not have before.  My side effects have been none up to this point.  I am starting 4 mg this week.  My insurance is covering the costs after 2 initial rejections.  I hope people are having luck with this if it is a medication they would like to try.  I have a bit of hope but also know what a long shot hair regrowth is for someone like me who has had alopecia for so long.  I will update if anything significant happens for me and I look forward to stories both of hair regrowth and equally as important, people who are not having growth.  

Comment by michael.kiyoshi.salvatore on December 26, 2022 at 5:30pm

Hey ya'll

I've been in a trial for this medication since 08/2018, probably just received the placebo until late 2019, and the full 4mg dose just started 08/2020 -- though its a double-blind trial, my doctors agree my results reflect a clear change of dosing.

I had AU since mid-2012 after emotional and physical traumatic events at the end of 2011, and developed rashes and other ailments in 2016+ with gluten and dairy that I relate to my hyperactive immune system.

I tried Xeljanz off-script with a dermatologist in 2017 which was promising at 5mg, but when he upped it to 10mg the hair began to fall out and my scalp was covered in puss-filled hives.

With the 2mg of baricitinib, I began seeing some eyebrow hairs around my nose but little else. With 4mg, full hair regrowth began over my head. From 12/2020-03/2021 it was consistently improving, until I had some more hives develop and patches fell out. Since then regrowth has been mostly consistent, save for an intense round of several antiobiotics in early 2022 leading to a lot of hair patches that are beginning to fill in now.

I had very thick hair before AU and it's definitely not as thick as before, particularly on the sides of my head, the nape of my neck, and the crown of my head, but coverage is still far more than I expected. I also no longer have sensitivity to gluten or dairy, and swear that my base energy level was higher when I started taking this medication and Xeljanz.

My drug trial doctor has said she'll help me acquire a prescription when the trial ends for me this summer. I'm happy to answer any questions people have :)

Comment by Joserid on December 26, 2022 at 2:44pm

Hello from Spain,

In Spain, the drug was also approved around Aug/Sept.

You can buy it in pharmacies but is it very expensive (650€/tablet).

Some public hospitals are providing them for very few people. I am trying to reach them but it seems though. 

I have AU from 6 yrs ago. Corticosteroids and so on, didn't work to me. Despite the hard of this sickness, I am good. Eyebrows tattoo with micro pigmentation and very time more and more self-confident.

Last month,  I visited one new doctor, he didn't have expertise with antijaks or very few... and he told me that the percentage or success is not very high (45%) and with AU for 6 years could be difficult. 

But I disagree, I think it is for the lack of experience and just read some articles. I have the feeling that can work, but I don't know.

Thanks for any suggestions or recommendations.

 

Comment by Sha on December 26, 2022 at 11:09am

Hi! Has anyone tried this medication yet?

 

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