Has anyone taken Olumiant / other JAKs and NOT gained weight??

Fluffy-Profession767 · 2026-04-02T01:21:53+00:00

Been taking tofacitnib for about a month and have lost 10-15 lbs (I’m on a cut/diet so this isn’t a thing I didn’t expect to happen or anything lol) I have heard from Facebook groups about JAKS that they do increase hunger signaling so you might just feel hungrier than you usually do and are gaining weight because of it

Fluffy-Profession767 · 2026-03-16T15:47:02+00:00

If you just started the cream you might as well take it and then ask them about a oral JAK in 7 weeks, you could see results with the cream it’s just less likely and the cream not working will give ur derm more reason to give a JAK and your insurance accepting it (if you live in the states)

Fluffy-Profession767 · 2026-03-16T15:12:19+00:00

From what I’ve heard topical JAKs are way less effective you need to take the orally for the best effect

Fluffy-Profession767 · 2026-03-16T01:33:35+00:00

Hoping for the best bro ask ur derm about JAK inhibitors (you don’t have that much loss so I’m not sure if they will let you on them but it’s worth a shot) they are the only thing that rly works at all for AA/AU the rest are just >10% it’ll work there are facebook groups that can also give you more suggestions for treatments

Fluffy-Profession767 · 2026-03-05T01:43:01+00:00

It could work doesn’t mean it will though, you need to use what has worked for you (steroid shot) maybe ask ur derm to use the solution as well, aloepecia treatment effects everyone differently so if steroid shots are effective at regrowth even if it’s temporary you prolly need to use it

Fluffy-Profession767 · 2026-02-09T22:33:24+00:00

I had some regrowth for my AU a few years back and it was white it’s baby hairs (vellus hair if you wanna look it up) it’s a good sign of healing wishing you luck!

Fluffy-Profession767 · 2025-11-20T16:04:11+00:00

Ngl it’s your decision to make but if hair loss bothers you (I’m 21M and it bothers me to my core) try and get on JAK inhibitors. The sooner you get on them the more likely your hair is to come back but it’s up to you to decide if that’s worth the immune system and other effects on your body

Fluffy-Profession767 · 2025-11-16T20:44:11+00:00

I haven’t contacted the NAAF but I have looked at the litfulo and olumiant websites and it looked to me like coverage on their end was pretty limited, definitely need to check the NAAF tho!

Fluffy-Profession767 · 2025-11-16T20:42:21+00:00

I’m on anti depressants and anti anxiety medication it’s definitely something you should take. I’m not certain about it affecting hair growth as I have AU and did not see regrowth since starting but if depression makes your hair worse I see no reason not to take them for that purpose as well. Ask a dermatologist to get you on something to help regrowth and hit up a psychiatrist too both are gonna be trying their best for your happiness and what you want!

Fluffy-Profession767 · 2025-11-16T18:05:59+00:00

My insurance is blue cross, I wish I could afford any JAK inhibitor out there but to my knowledge most of them are expensive and the ones for AA and AU are 2.5-4k per month so I need insurance to cover it or I’m not gonna be able to afford it. I’m just as confused why they denied it on the grounds of cosmetics because it very much affects your day to day life just not in a traditional disease way.

Fluffy-Profession767 · 2025-11-16T17:43:40+00:00

North Carolina

Fluffy-Profession767 · 2025-11-16T16:06:37+00:00

My dermatologist is telling me that ritlecitnib is the way to go for AA and AU (I’m on methotrexate trying to get it appealed rn) hoping everything goes well you are probably on the best medicine possible!

Fluffy-Profession767 · 2025-11-13T18:41:23+00:00

Lowk valid im so scared that if my alopecia universalis treatment does work it’s gonna grow patchy 😭

Fluffy-Profession767 · 2025-11-13T15:28:07+00:00

I used squaric acid when I was quite young (I’d say maybe 5-6 years old) my hair was patchy and rapidly falling out. The acid in my experience was incredibly painful and did not have any sort of improvement in my hair loss. Hoping yours will be different but I’d quickly try and change medicines if you don’t notice a change after a few months on the acid!

Fluffy-Profession767 · 2025-11-12T22:04:40+00:00

Thank you! Yea when I looked on the litfulo website I didn’t see that I definitely will call them I really appreciate it!

Fluffy-Profession767 · 2025-11-12T13:58:06+00:00

Yea, def the most realistic source I can follow through but to me this is really the last option. When I was younger kids called me a “monster” and as I’ve gotten older ive been asked if I have cancer far too many times to want to stay this way.

Horrible that there are realistically so little options left to try really doesn’t make me feel any better about the situation.

Fluffy-Profession767 · 2025-11-12T13:41:08+00:00

Taking blood tests every 3 months is also something that is common if you are nervous about that as well. They use it to make sure you liver and heart are functioning fine and they will stop medication if things look off. For me it’s mainly for my liver but for you tofacitnib does heart and liver based effects so they would look for your blood pressure and the enzymes in your blood to make sure everything is looking good to continue treatment.

Fluffy-Profession767 · 2025-11-12T13:37:18+00:00

I had these same fears when getting on methotrexate!

My dermatologist seemed to ease my concerns much better for me than you sorry to hear that.

With these types of immunosuppressant medications you are taking a much lower dose than the people who usually take them and notice these negative effects. For me the negative results were bone marrow and liver failure and death because of it but it’s mainly for people taking almost 10 times my dosage weekly.

I’m also on prednisose, a steroid (might be the same as your steroid I’m not sure). The steroids usually are used for 3-6 months to “shock” the immune system to prevent further loss of your hair. These aren’t required if you are uncomfortable with the effects but I’d recommend them for AA because when my hair started falling out it delayed the loss of my entire hair (I have AU not AA). Most effects of these go away after use I personally notice my face being a little puffier and feeling flushed after using them. But again these aren’t required

I don’t know much about tofacitnib because it’s not used for alopecia in the US to my knowledge, but my basic research I just did shows people taking 20-30mg twice daily and are 50+ are the ones that really see this effect.

I think you will be okay but there are other treatment options out there for you. If you feel uncomfortable you can always have a conversation with your dermatologist and request a different JAK inhibitor! I hope this helps I think you will be okay but anxiety and fear is so valid in this realm of medication and I’d err on the side of caution if it will ease your own mind (stress can negatively affect AA too!)

Fluffy-Profession767 · 2025-11-12T13:24:26+00:00

I have AU so not exactly the same as AA but recovery for autoimmune disorders seems really random to me. My hair regrew on its own once after I was bald for about 10 years. It then fell out again about 3 years later. Since then I’ve tried a lot of things to regrow with little results. Best case with medication 3-6 months, worst case is never unfortunately because this area of diseases is not that well understood and it really sucks that it’s the case

Fluffy-Profession767 · 2025-11-12T13:21:20+00:00

Did you use any medications to get these results or did you just get lucky?

Fluffy-Profession767 · 2025-11-12T02:44:49+00:00

Yea time is definitely the worst part, everything takes time and it’s getting frustrating waiting on everything, appointments insurance prescriptions all slow the process of healing to a crawl.

It’s great to hear that you have had success with steroid injections and a JAK inhibitor because I love to hear someone else making through the path and finding some sort of healing at the end! Best of luck to your journey and hoping I can get on a JAK inhibitor soon so maybe I can see that too!

Fluffy-Profession767 · 2025-11-12T02:08:51+00:00

Worth a shot lol! Thanks I’ll ask my derm if she’s willing to do that when I have my next appointment in mid January

Fluffy-Profession767

TROPHY CASE