Where acceptance is all there is!
Hello everyone. My doctor advised to change medications as seen from the title. I’ve had full regrowth on Tofacitinib with spots here and there mostly on my facial hair. I’ve had a very bad flare up recently and my doctor wants me to switch to Litfulo. She says I can switch from one day to the next without needing to ween off Tofa. Like everyone else, I’m scared I’m going to lose everything again on Litfulo. She assured me that I should be fine since the pill is extended release, and it targets the same JAK pathway as Tofacitinib. Now I’m stuck with constant worrying and uncertainty. Can anyone share their experiences switching meds? Specifically these two that I mentioned. Thank you everyone.
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Good news, but the bad news is it looks like its a few years away from being done with phase 3, right?
I dont want to join a trial and get stuck with a placebo
Leqselvi 12mg isnt approved though, so if I was to do 8mg vs Olumaint 4mg, probably would be better off with Olumiant
Yes, around 2 years before Upadacitinib will be approved, Im currently enrolled in Abbvie trial and it will end for me 2.5 years from now, it is approved however for other ilnesses like atopic dermaitis.
Olumiant 4mg is better than 12mg Leqselvi. Also Leqselvi is taken twice daily which is disadvangate compared to Olumiant.
There are placebos in the trial though right?
Hows the trial going for you?
I cant risk not taking Litfulo for a placebo since its working okay, but not great
Any reason why Olumiant works better than Leqselvi (which is newer, so should have made it work better I would hope)?
I want to give the supplements that affect T regs a chance, but I may need to increase Litfulo to 100mg if possible for some months to give mself up until 6 months or so
If this isnt working great next year, I will change to Olumiant
I also wonder if it makes sense at all to combine Litfulo with some Xeljanz that I have, but the risks are likely too high and no studies or info on comibing two of these. Likely too much of a health risk and wouldnt get approved by any doc
"There are placebos in the trial though right?"
Yes, there is a chance for placebo but only during first 24weeks, after that if there are 0 results then you switch to on of upadacitinib dosage.
"Hows the trial going for you?"
It's ok, I had 0 hair on my body when started, right now after a year I have full eyebrows, eyelashes, beard, puberty hair, and ~75% of regrowth on head. Still growing. I will continue for next 2 years on this trial. It also works for me on atopic dermaitis so its a bonus for me.
"Any reason why Olumiant works better than Leqselvi (which is newer, so should have made it work better I would hope)?"
I mean, Lesqelvi works better than Olumiant but only for 12mg dose but due to safety reason (blood clots) is was not approved, so Olumiant is safer at higher dose probably because of lower exposure to JAK2.
"I also wonder if it makes sense at all to combine Litfulo with some Xeljanz."
Don't do that, too risky including getting cancer.
"Yes, there is a chance for placebo but only during first 24weeks, after that if there are 0 results then you switch to on of upadacitinib dosage."
Darn, just not worth the risk for me I think. I rather try to get 2x Litfulo (on 1.5 right now) with the help of my Derm and see if that + increasing T reg will work
"Olumiant is safer at higher dose probably because of lower exposure to JAK2."
Makes sense, leads me to believe that RInvoq has little side effects for you right? Maybe not as light as Litfulo (no real side effects), but thats b/c it should work better due to blocking more pathways
Don't do that, too risky including getting cancer
Any more info you got on this? I wont be doing it, but good to learn about why you believe so.
I wonder if I could get Rinvoq another way with the help of my Derm, I see some others have,, just unsure how
I dont have any side effects on Rinvoq, maybe from time to time headache. I've gained 20kg lately but I thinks that is due to antidepreessant Lexapro which Im taking simutanesly, I was very skinny so its positive for me.
AA is immunological condition where immune system attacks hair folicle, so in order to restore hair you need to weaken your immune system in certain way which can expose you to magliances. JAKis weakens the immune signaling of certain ILs. It's obvious if stronger and wider the weakening is you are potentially more exposed to side effects. When I enrolled to clinical trial I signed the consent where there informed me about possibility of lung cancer and other types such as CTCL so in this trial smokers are excluded. Even on trial of Litfulo I read some paricipant developed breast cancer, also risk of cancer is in official Pfizer safety information regarding Litfulo.
You can read more of it there:
JAK Inhibitors' Cancer Risk Confirmed in Real-World Data | MedPage Today https://share.google/3SqVxjoP563mOpezB
Also JAKis such as Olumiant and Xeljanz have black box label in US which is most serious warning.
https://www.fda.gov/drugs/fda-drug-safety-podcasts/fda-requires-war...
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