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Doctor wants to switch me from Tofacitinib to Ritlecitinib (Litfulo)
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.
Replies to This Discussion
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Permalink Reply by Nat on
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Hello, can anyone recommend a doctor in New Jersey who understands alopecia? My insurance keeps denying Olumiant, and the doctors I’ve seen don’t seem to understand alopecia or want to manage my condition.
I have alopecia universalis, but I currently have a full head of hair because I’ve been taking Xeljanz for the past 7 years (paying out of pocket through Beacon). My insurance is now refusing to cover any medication because of this, basically saying I would have to lose all my hair again to prove I have alopecia.
I tried Columbia Dermatology in NYC, but they don’t accept my insurance.
Any advice or recommendations would be greatly appreciated.
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Permalink Reply by tomasz777321 on
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Sorry. I can't help. I live in Europe where healthcare is public.
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Brett King is close drive (1.5 hour) and he is the top expert in the world https://brettkingmd.com/ . I m taking Xeljanz since 2017 with full re-growth. You can check my replies and posts over time. Wish you good luck :-)
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@nhazir "Yes I am on 2x 8mg a day
I woner if I can experiment with half a pill extra 2x a week
Its been 2.5 weeks so far, not seeing anything yet, but also early of course. But it should be in my system and I am starting from a very good baseline
Just don't want to see shedding get worse"
I wouldnt expiremient due to safety, keep my figer crossed for you
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Well it been a bit over 6 weeks now and the shedding is getting a bit worse and starting to get a bit concerned
I am getting blood work done this week and will try to see if my doctor will allow me to take a slighlty higher dose for 2-4 months
I want to see if its a dose issue for me or just needs more time
I am not starting at a baseline of 0, the medication shouldn't take 6 months + to work if it will work properly
Hoping for the best
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Hmm. For most of the patient sheeding after withdrawal isn't instant but occurs after some months. If you are sheeding now it also can be because previous medication - Litfulo stopped working and its delayed reaction . There are zero studies regarding switching from one Jak Inhibitor to another without gap, so it is just guessing. I dont believe that dosage is too low, Leqselvi is stronger than Litfulo even on lower dosage. It may take longer regarding Leqselvi to work for you because when sheeding started on Litfulo the hair needs to fall out in order to grow new on Leqselvi.
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I didnt have as much shedding from Litfulo to Xeljanz iirc, but also was blocking similar Jaks if that matters
My bloodwork was good and my doctor is ok with a slight increase for a short period of time
Like 2x extra pills a week, a 1.15x increase in dosage. Could do 3-4 if needed in the future
Question is do I take 3 pills 2x a day or split them and then go 20mg a day for 4 days of the week (likely going with the latter)
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I took Leqselvi 12mg 2x daily (24mg daily) in Clinical Trials for 2 years and was fine, but after some time I had elevated blood pressure, and cardiac side effects were the reason why this dosage was rescinded, so be careful, drink a lot of watter and take magnesium. I would split them in most equal way because it will be more stable during every intake - without the peaks of concentration in blood.
Can you tell me when you started sheeding and how intense it was? So Litfulo worked and then stopped?
"Question is do I take 3 pills 2x a day or split them and then go 20mg a day for 4 days of the week (likely going with the latter)"
If you wil ltake 3x 8mg twice daily (24mg x 2 = 48mg daily) Its too dangerous and can be mortal.
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Why Magnesium just wondering?
Yes I decided to evenly split them up. So I will take 2 extra tablets total a week for now. So I split them in two and every other day take the extra 1/2 a tablet
I cant answer the shedding question easily since I have been shedding for a lot of this year even on 2x Litfulo
But 1-2 weeks after I switched I felt like the shedding was getting worse
And to the last part, I meant 3x8mg total, so 24 mg for the day (but not doing this)
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"I cant answer the shedding question easily since I have been shedding for a lot of this year even on 2x Litfulo"
So as I said, process of regrowth will take longer in your case because follicles that initiated sheeding will need to complete this sheeding - old hair will need to fall out to make space for the new one, so will take longer than creating the hair from zero.
"Why Magnesium just wondering?"
A low level of magnesium (hypomagnesemia) disrupts the electrical and muscular stability of the heart, leading to serious cardiovascular risks.
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