Alopecia World
www.alopeciaworld.com
Update: 1 year on Tobacitinib!
HI All!
March 1, 2019 marked my 1 year Tofacitinib.
Either Xeljanz and or Generic Tofacinix from Beacon Pharma in Bangladesh.
Started on 10mg per day and bumped up to 15 mg per day in August of 2018.
I saw my doc at Columbia University in NYC on my 1 year mark.
He drew my labs and everything came back great!
I've currently been on 3 pills per day of Tofacinix (approx 15mg per day with probable slight dosage variation due to it being a generic)
My doc has me starting to wean off the meds, here is his plan for me:
I went down to 2 pills per day (10 mg per day) starting March 1,2019
After 3 months, if no shedding, no patches, he wants me to go down to 1 pill per day.
After 3 months, if no shedding, no patches, he wants me to try to go off completely.
Update on Pfizer Xeljanz co-pay coupon. The Co-Pay coupon is now 3 months FREE
You can use it once per year. It wasn't free for me last year, but it is now!
I called in and activated the coupon with Pfizer and next day walked out of the pharmacy in NYC with 180 free pills of Xeljanz. So I will be on the name brand for 3 months and then will switch back to my stockpile of Beacon generic.
No side effects. Current pics below. Last time I buzzed was Dec 16, 2018
Also a baseline pic from March 1, 2018
Thanks for all of your support guys and wishing everyone here healing in whatever way it comes.
Love of love,
N
Replies to This Discussion
-
Permalink Reply by NicoleT on
-
Hey guys
Good news. All of my patches caused be going from 15 to 10 per day are now covered in brown regrowth.
i went back up to 15 upon finding the patches and then up to 20 7 weeks ago. Sort of wish I had just stayed st 15 to see what happened. I suspect the regrowth might have been the same as it was on 20.
It did not grow in white but straight to brown.
I will see my doc on sep 12.
I plan to VERY slowly taper back down to 15mg per day in about november. I will keep you guys posted.
My doc says I won’t be able to go down below my 15mg dosage until I’m older and my immune system slows down. She says nothing about building up a tolerance to Jaks.
-
Permalink Reply by Cocopuffz17 on
-
That’s awesome! Wohooo! I agree with the super slow taper to know exactly where the tipping point is, if any.
-
-
Alopecia isnt stable. U could have suddenly higher inflammation. Sometimes lower... that's why some people have regrowth even without medicine.
So the tipping point, unfortunately, isnt stable either. Some people have relapse without changing the dosage.
The goal is to find a regimen ( lowest as possible is the ideal) that gives regrowth and to stay on it.
-
-
Yes, but there is a reason that the body is fluctuating inflammation. I truly believe it is the garbage food we put in our bodies, packed with lectins. Causing massive amounts of GI distress/Inflammation. Stress also is a trigger.
It would be awesome to see peoples nutrition when their alopecia goes away for no reason. To see if its changes in nutrition or reduction in stress.
You know they do feces transplants from unhealthy patients and put feces from healthy people and it reverses their health condition for the better.
-
-
Never heard of that lol!I have never eaten a McDonalds hamburger or any fast food in my life no dounuts,cake meat.Cook only with fresh vegetables and fruit.If bad nutrition was what gives you alopecia I surely shouldn’t have it!
-
-
Awesome I’m very happy really that good news
my Question is Are you on Tofacinix ?
Thanks
best regards
-
-
Nice. Is your doctor aware you are taking generic? If so, do they give any feedback regarding dosing, safety, etc?
-
-
yup ive always been on the generic.
ive only had a couple bottles of name brand in the past
-
-
thanks Nat!
so relieve was afraid i was going to go thru this all again with the wigs etc etc
xoxo
© 2024 Created by Alopecia World.
Powered by
