Replies to This Discussion

Permalink Reply by nzahir on August 24, 2025 at 2:09pm

"-I thought you have AU and zero hairs. If you have small bald spots then this might support immunosupression of JAK inhibitors."

I had Alopecia with 1 patch in 2016-2018, then I had AU. What is it considered now if I have my beard, eyelashes, majority of eyebrows (but shedding now a bit), and bald head (hair grows, but I shave it since its not as much as before and a patch in the back of my head still). 

I would try injections on my eyebrows, but just worried about potentially making things worse. If thats even possible. JUst scared it somehow causes the body to attack itself, even if that may be illogical thinking

Have you seen anecdotal stories or even studies on people growing back hair, shedding for some months and then getting better? Or usually continues to get worse?

I am in a tough spot and not sure what to be doing here. 

I can either continue the extra dose every other night and try a cortisone injection if theres good reason to do it and wont be negative/and or hope this Omega 3 helps

I can see if my doctor will allow 100mg a day since its being studied, but would need to get extra doses every month from him if even possible

I can change to Olumiant/Leqselvi 

Permalink Reply by tomasz777321 on August 27, 2025 at 8:01am

@nzahir

I dont know your disease history. Do you have any break of treatment and when did that occur? What JAK you tried before Litfulo. If you are currently sheeding on Litfulo 50mg and you didnt have any break of treatment then I would switch to Olumiant 4mg. I dont think that 100mg of Litfulo would help if you are sheeding on it, 50mg should be sufficient.

"Have you seen anecdotal stories or even studies on people growing back hair, shedding for some months and then getting better? Or usually continues to get worse?"

If you had break during taking JAK inhibitors then it possible. If you are sheeding without any break on it I just think that this JAK isnt working for you and you should change. It also depends how long do you take it -  as I sad I dont know you disease history. I took 1 week break on Leqselvi, started sheeding but I've manage to regrowth after some time but sheeding was caused by break in treatment not by unresponsivnes to JAK inhibitor.

Permalink Reply by nzahir on August 27, 2025 at 6:08pm

@tomasz

I am not on a break and never taken a break since 2018

I was on Xeljanz from 2018-2019 on standard dosage (full year). Grew nothing, so I went to double dose for a while. Grew back probably 1/2-2/3 of my hair, all my eyelashes, most of eyebrows (but better and worse at different times), 90-95% of beard. But I was getting sick after a while and then in 2020 I would rotate from standard dose to doble to 1.5. 

So I platued, but not much shedding. But I was always bloated stomach wise due to blocking Jak2 likely

Been on Litfulo since Nov of 2023. When I went from 50mg to 75mg I had less shedding for some months and saw some improvements, but that has reversed.

I wonder if 100mg will only give a short term boost or if its enough or if this is just a sign that I need Jak 1 blocked. The new study on 100mg is happening now. If there was no placebo or 50mg, I would join it

My concern is that I need Jak 1 and 3 blocked, but there is no medicationt that does that concentrated, right? Litfulo was supposed to be, but they stopped it do to safety concerns it seems like. 

But those concerns make little sense to me since OLumiant blocks Jak 1 and 2

Permalink Reply by tomasz777321 on August 27, 2025 at 7:59pm

@nzahir

"My concern is that I need Jak 1 and 3 blocked, but there is no medicationt that does that concentrated, right? Litfulo was supposed to be, but they stopped it do to safety concerns it seems like. "

JAK3 is blocking same cytokines (ILs) like JAK1 but JAK1 its wider - it is blocking more cytokines beside those blocked by JAK3. Since you grown hair on Xeljanz which is JAK1/JAK3 this could mean that only JAK1 will be sufficient. The diffetence is just about balance - Xeljanz will be probably stronger towards this cytokines shared both by JAK1 and JAK3 since its is blocking both. But since you have weak effects on Litfulo it can mean you need more cytokines to be blocked outside JAK3 which could be done by JAK1 inhibitors. Of course we can take into consideration scenario in which you need stronger inhibition towards JAK1/3 cytokines which because you had good results after Xeljanz dose increase but it can be also done by highly selective JAK1 inhibitors.

I would try Olumiant 4mg which has better efficancy that Litfulo overall. 

It depends also on strenght of medication on certain kinanses - Baricitinib (Olumiant) works stronger towards JAK1 than Xeljanz (Tofacitinib)

Look on this screenshot again.

Permalink Reply by nzahir on September 3, 2025 at 2:53pm

@tomasz

I have been using Chatgpt a bit for some help as well. Seems like medications can lose efficiency over time

https://chatgpt.com/share/68b88d4e-9228-8013-a725-76ac8037d345

"Immune system adaptation (“pathway switching”)" and memory T cell persistence sections in the link 

So maybe changing medications from time to time may be needed for some. 

Also now taking Omega 3s and Resveratrol+EGCG and Apigenin from before

I want to give this some months if possible or see if my doctor will allow me to go on 100mg for some time

If these dont work, then I will try Olumiant 

Permalink Reply by tomasz777321 on September 3, 2025 at 6:06pm

@nzahir

Sure, but keep in mind that anything above 50mg of ritlecitinib for long period of time wasn't tested and it increases risk of side effects.

From my point of view it doesnt make sense to use increased dosage of Litfulo since you are sheeding and higher dosage are not clinically proven. 

Thanks for ChatGPT prompt, it confirms what I said before, that JAK1 already inhibits what JAK3 inhibits but broader. Also supplements like Omega 3 will not block cytokines outside JAK3 sufficient to improve AU - it can only support if cytokine is already inhibited.

Regarding AI like ChatGPT we need to double check every answer because often it is hallucinating and shows not accurate data.

I keep finger crossed for you, let me know after some months what treatment worked for you.

Permalink Reply by nzahir on September 6, 2025 at 2:43pm

You are right that higher dosages were only tested for a limited amount of time, I do bloodwork 1-2x a year of course. But the higher dosages helped with results.

I also had stomach issues when on increased xeljanz, but perfectly fine here. Like I couldnt even eat raw foods without feeling sick, now I feel fine.

I will ask my doctor what he thinks if we can try 100 mg a day (if we can get enough medication through insurance or Pfizer reps) for a couple of months. But the concern then is my body will basically need the 100mg and can that be done long term health wise (I feel like its ok there since more selective), but also can we get enough medication. We would need that 100mg trial to have good results and limited side effects 

Regarding the supplements: 

I will have to hope these work. I think they will take some months to even see effects (if any). I assume the cytokines are still mostly blocked or I would be fully shedding. But I may need to buy time and see if we can get on a higher LItfulo dosage.

Resveratrol: Suppresses STAT3 signaling (downstream of IL-6 and IL-23), reduces IL-17 production

Omega 3:

AA scalp biopsies show high levels of IFN-γ and IL-15–driven inflammation 

Omega-3s can reduce IFN-γ production by T cells in vitro.

I think if I can get on extra dosage for a while, or not shed mch here on 75mg, I will try this out for some months+ and see where I am at

If its still not working and getting a bit worse, I will go to Olumiant

I am just worried Olumiant doesnt work and then things get worse and now I feel regret for not just sticking with the Litfulo 

Tough decisions, hopefully more medications and different options are available in the near future 

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