Replies to This Discussion

Permalink Reply by tomasz777321 on August 15, 2025 at 10:57am

Yes, I was on 50mg of Litfulo - it was revealed to me in extension phase of clinical trial when I participated.

Here is comparison of effectivness of JAKs inhibitors in AA.

CTP-543 is Lesqelvi which is deuterated version of ruxolitinib. I took 12mg of CTP-543 which was later suspended due to adverse effects - blood clots in one of the patient. Also I had problems with my blood pressure when I was taking it. After suspension I had 2 months of break in this clinical trial when I lost my hair and then they put my back to 8mg of CTP-543 but the time was too short to recover before end of trial because when process of falling of hair was started it takes longer to regrowht.

As you can see Leqselvi 8mg is slight weaker than 4mg of Olumiant. Also Leqselvi is taken twice daily.

Ruxolitinib is medicine for blood cancer and from what I saw IC50 values are similar to Baricitinib but Baricitinib is slighty weaker towards JAK2 when calculating proportions - but we need to take in consideration that Leqselvi is deuterated ruxolitinib.

I have best effects on Leqselvi 12mg twice daily - I was able to recover ~90 percent of my hairs in around six months.

On Rinvoq my response was very rapid, I was able to recover ~60% in around one month with eyelashes and eyebrows, but right on my 8 month it slowed down and still I need around 25% of still to recover, but I dont know my dosage of Rinvoq, it can be 15mg or 30mg. I have zero side effects on Rinvoq.

Permalink Reply by nzahir on August 19, 2025 at 12:07am

Thanks for the last post, I couldnt reply to it there so replying in two spots

Leqselvi 12mg shows better than Olumiant 8mg no?

I thought Leqselvi should be better since it targets Jak2 less. Am I wrong on this?

Also what does this mean "but we need to take in consideration that Leqselvi is deuterated ruxolitinib"? Like tje medication is more dangerous or?

• ▶ Reply

Permalink Reply by tomasz777321 on August 19, 2025 at 7:37am

What actually matters is inhibiton of Interleukins (ILs) by blocking JAK-STAT pathway implicated in AA such as IL-6, IL-15, IL-17/IL-23, INFy. JAK2 can also block some of them (look at screenshot with JAKs that I posted very early). It very individual matter, some people can even response only to TYK2 selectivity by inhibition of IL-23.

Deuteration means it is same molecule but hydrogen was replaced by deuterium which changes slightly pharmacodynamics, it can actually make molecule safer but I think selectivity will not be 1:1 compared to the original molecule.

I took Leqselvi (CTP-543 - deuterated ruxolitinib) 12 mg twice daily in clinical trials but this dosage is not available commercially due to side effects - 8mg is only available, 12mg of Leqselvi > 4mg of Olumiant. Also Olumiant (Baricitinib) doesnt have dosage 8mg, only 2mg and 4mg once daily.

As I showed before 4mg Olumiant  > 8mg Leqselvi in terms of efficancy on larger population.

Permalink Reply by nzahir on Wednesday

Ah I always thought 8mg of Baricitnib was available or mabe I had read some stories of people taking it for a short time

Does anyone here/that you know of take Leqselvi 12mg for even a short time?

I wonder if the side effects of Leqselvi 8mg vs Olumiant 4 mg are better or worse. 

Does it being a newer medication or having a higher Jak2 iirc help its cause or not really?

I really wish there was a Jak 1 and 3 medication as that should be the most effective. Originalyl that was Litfulos pathway and Pfizer seemingly messed up (or were worried abotu side effects) as I have read many shed on Litfulo after a while and they are trying out 100mg trials now.

Rinvoq is newer for this, but may be the best option, but that could be some more years to be available 

Permalink Reply by tomasz777321 on Wednesday

@nzahir

I reply here to your reply from 20 August because I cant do that below original post.

"I wonder if the side effects of Leqselvi 8mg vs Olumiant 4 mg are better or worse. "

Here are results of clinical trials of CTP-543 (Leqselvi) with side effects, you can compare it to baricitinib

CTP-543 (phase 2 trial - cant find phase 3) : https://www.sciencedirect.com/science/article/pii/S0190962222005370

Olumiant (phase 3 trial):

https://www.nejm.org/doi/full/10.1056/NEJMoa2110343

"Does it being a newer medication or having a higher Jak2 iirc help its cause or not really?"

Being newer doesn't matter, also its hard to calculate side effects basing only on JAK2 selectivity because you need to take in consideration dosing. From my experience I had problems with blood pressure (too high) after 1.5 years of using it on 12mg but also on 8mg.

"Does anyone here/that you know of take Leqselvi 12mg for even a short time?"

Sorry I dont know anyone beside me, this dosage is too dangerous, FDA restricted it and it was only available in clinical trials.

Permalink Reply by nzahir on Thursday

When you said you were taking 12mg twice daily, did you mean

24mg total or 6mg each time?

The studies for Leqselvi didnt really mention many people on adverse side effects. Am I missing this? 

Do you know of any supplements that block Jak 1 or IL related to it? My dad has mentioned taking Omega 3 and I have started (also have been taking Apigenin and Ecgc in green tea pills for years. Also taking Oral rogaine as well earlier this year).

And any thoughts/research on Latisse? I am worried about possible side efftects like sunken eyes/darker eyelids. 

Feel free to add me as a friend on here too if you would like if messages are easier. 

• ▶ Reply

Permalink Reply by tomasz777321 on Thursday

I dont have experience with Latisse so I cant say anything.

Curcumin (Turmeric extract) and Resveratrol can inhibit related ILs but I dont think that effect will be strong to give results alone.

Also anti-derpessants such as Lexapro and Wellbutrin together can decrease IL-6 and IL-17 and reaserch prove that patients on anti-depressants have better results on AA. But Wellbutrin elevates blood pressure.

Also Pfizer was working on brepocitinib JAK1/TYK2 inhibitor which gave much better results than Litfulo in AA but it was discontinued due to side effects.

I used rogaine but not oral, it can elevate blood pressure to high which together with JAK2 inhibition is not good for me but it works fine in terms of hair. Also hair can sheed if you discontunue to use rogaine.

Here was news about 12mg discontinuation which confirms bad side effects of 12mg of Leqselvi:

https://www.cnbctv18.com/business/companies/sun-pharmas-clinical-tr...

12mg BID means 12mg twice daily so 24mg daily.

Permalink Reply by nzahir on Friday

You think those supplements+Litfulo can help?

I took RSV for some months, but would upset my stomac iirc. 

I feel like Curcumin will do the same, but not sure

You use any of those?

I see that Leqselvi 8mg is twice a day....so isnt that 16mg?

But baricitnib regular dosage is 4mg once a day? Yet it works just the same, if not better?

Also any experience or info about steroid injections? They worked for me a bit like 8-9 years ago when I just had a small patch on the back of my head. But worried that it can trigger the body to attack itself and also worried about the pain a bit on the eyebrows

Permalink Reply by tomasz777321 on Friday

@nzahir

"You think those supplements+Litfulo can help?"

-If JAK will not work then supplement will not help it. It is just a small addition that will speed up the process of regrowth, Liftulo is the worse JAK for AA interms of efficancy.

"You use any of those?"

-No I dont. I just use Rinvoq and anti-depresants (Lexapro and Wellbutrin).

"I see that Leqselvi 8mg is twice a day....so isnt that 16mg?"

-Yes 8mg twice daily is 16 mg daily.

"But baricitnib regular dosage is 4mg once a day? Yet it works just the same, if not better?"

-Yes.

"Also any experience or info about steroid injections? They worked for me a bit like 8-9 years ago when I just had a small patch on the back of my head. But worried that it can trigger the body to attack itself and also worried about the pain a bit on the eyebrows"

-Haven't used that, It will not be sufficient in AU.

Permalink Reply by nzahir on Saturday

So Egcg definitely helped my beard about 4-5 years ago, but  I was also in the phase of growing and not shedding. Guess it cant hurt to try these+Litfulo, but unsure what I should be doing honestly. 

I can also look to switch to Baricitnib/Leqselvi, but worried it also doesnt work. Also worried about the time from when I am off of Litfulo and just starting the other medication, will I be okay or can there be massive shedding? I recall there was some going from Litfulo to Xeljanz. 

I assume taking two medications at the same time, even though blocking different Jaks, wouldnt be allowed and potentially unsafe.

I have read from many that a certain medication will work and then stop working as well an then changing to a new medication will work, but then the same process may repeat. Any truth to this or why this happens?

Does your body adapt and start to just prodce more Jaks?

Why dont you think a steroid inhection will work in a localized spot while also taking a Jak? My doctor said it should, but I am more worried about it possibly causing more harm

Permalink Reply by tomasz777321 on Saturday

"I can also look to switch to Baricitnib/Leqselvi, but worried it also doesnt work. Also worried about the time from when I am off of Litfulo and just starting the other medication, will I be okay or can there be massive shedding? I recall there was some going from Litfulo to Xeljanz. "

-Yes, even one week without medication can start process of sheeding which can occurs months later, even changing dose to smaller can do that. Effects of withdrawal depends on individual person. I was one week off Leqselvi and started sheeding 1-2weeks later, so it will be hard to asses if new JAK is working because if sheeding started months after drug withdrawal then hairs need to fall out to let the new one grow, so its slower than starting from scratch. I dont know if changing instantly from one JAK to another is safe, there are too little studies on it. Maybe 1-2 days off one to let the body get off old JAK will be ok but its just my speculation we need to take caution about this.

You can read more about it here: https://jamanetwork.com/journals/jamadermatology/fullarticle/2822460

"I assume taking two medications at the same time, even though blocking different Jaks, wouldnt be allowed and potentially unsafe."

-Yes its  very dangerous, if immunosupression is too strong you can even get very bad side effets. Some people even on Litflulo alone in clinical trials got breast cancer so its not joking.

"I have read from many that a certain medication will work and then stop working as well an then changing to a new medication will work, but then the same process may repeat. Any truth to this or why this happens? Does your body adapt and start to just prodce more Jaks?"

-Body doesn't adapt to produce more JAKs, JAK is kinase that transmits signaling from cytokne (ILs) through JAK-STAT pathway so body response like attacking hair follicle is blocked.

Amount of JAK kinases is always the same - but after some time body is adapting to drug molecule and tolerance for medication is build and effects will be weaker through time, that's why trying new molecule might help. Its common effect in medicine regarding every drug not just JAK inhibitors.

"Why dont you think a steroid inhection will work in a localized spot while also taking a Jak? My doctor said it should, but I am more worried about it possibly causing more harm."

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

Permalink Reply by nzahir yesterday

"-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 

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page