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 Nat on
-
I read about steroid pulsing but I have not tried it.
About the doctors. Dr. from Columbia prescribed Xeljanz. Then I had an appointment with a rheumatologist and he prescribed 60mg of Prednisone alongside Xeljanz. He called my Dr. in Columbia and they both agreed. He thinks, that Prednisone will boost and speed up the recovery. I had some side effects from Prednisone and reduced it 50mg-40mg-30mg-20mg (week).
-
-
Woohoo congrats Nat!! :)
So happy for you! Look at all that hair!!
Enjoy every minute of it. Have you started thinking of a hair style?
-
-
Thank you TC!
I am a few months away from any hairstyle. I hope my hair stays once I am off Prednisone.
-
-
You look great and the progress is inspiring!! You’ll crush the wedding. Good luck man.
-
-
Getting lots of white hairs. Not much color even for some of the growth that is 2 months old but I guess something is better than nothing! Been on xeljanx for about 3.5 months so I’m hopeful that the medicine is working... even if it’s not as quick as I want it to be haha.
Just grateful that because of this forum there is at least hope.... which is more than most of us had prior.
-
-
So happy for your results
-
-
Hey there,
I am very interested in getting some Xeljanz, what are the long term implications of taking it and from a health perspective, is it worth it? I have been on and off of prednisolone for a few years and every single time, i have a lot of regrowth but as soon as its discontinued it falls out again, so this seems to be a longer term option perhaps? I am just worried about where is a reputable place to buy it and how it has an effect on long term health.
Dan
-
Permalink Reply by edie1122 on
-
Thank you for the update and pics! It's wonderful to see you have great results. Sounds promising:)
-
-
Hey Nicole,
First off, thank you so much for sharing your journey with us! You're a huge inspiration to us all :)
I have a quick question regarding how you were taking the medication. I see you wrote you started by taking 10mg and then bumped it up to 15mg after 5 months. During both of these times, did you take the entire dosage at one time during the day or did you split it up? If you split it up, how much mg did you take each time and how big of a time gap did you leave between each? Thanks!
© 2024 Created by Alopecia World.
Powered by
