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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
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Permalink Reply by yp on
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Stupid question...
For those of you taking 3 pills or 15 mg, do you take two in the morning and 1 in the evening OR 1 in the morning then midday then evening?
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Permalink Reply by NicoleT on
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I am yes, was mixing with pfhizer name brand, but now im moving back to just beacon even though i have 2 bottles of name brand left because i have some beacon that will expire earlier.
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I would recommend trying to find a dermatologist in your area that knows about tobacitnib being used for alopecia and going to them. I went to a couple dermatologist that tried making me use other thing which weren't working. I went ahead and scheduled an appointment at Columbia Dermatology in NY for this upcoming Monday since they treat alopecia using tobacitnib.
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Hi Guys,
Update on my weening progress.
On March 1, I went down from 3 pills per day to 2 pills per day.
Hair is growing nicely and very thick.
On May 15, after being 2.5 months on the reduced doseage, I noticed that I thought my eyebrows and eyelashes appear to be thinning out...Then I went to push my hair back in a headband and noticed i have about a 1.5-2cm bald patch above my right ear. No other patches that I can spot (my hair is really thick).
My Dr. Fil Kabigting left Columbia so I have an appt to see Dr Bordone on May 30. Looking forward to meeting her.
At the advice of a doctor friend, on May 15 after spotting the patch, I took my doseage back up slightly.. alternating every day 2 pills, 3 pills, 2-3-2-3-2 each day
Apparently other Docs advise being stable for a year before reducing doseage. Which I had only been stable about 3 months before I started reducing my doseage. I think my doc was just trying to reduce for me as hes so sensitive about the price and the supply challenges. With good reason.
Keep you posted how I bounce back from this patch/shedding.
Needless to say, I will not be going down to 1 pill per day on June 1!
Thanks!
N
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hello nicole I also have a thinning eyebrows and beard,
morality is not good at the moment.
I also reduced the dose by alternating 10mg and 15mg I also stopped the cortisone.
Tuesday I begin solumedrol bolus pulsation 500mg for 3 months, 3 days a week each month.
balance health I have a bad feeling in the left leg weakness and heaviness
I'm going to do a Doppler ultrasound
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Permalink Reply by Vanessa on
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Thanks so much Nicole for keeping us posted. I have been taking 10mg/day (2 Beacon pills) for 3 weeks, but decided to up my dose to 3/day because I understand the Beacon generic may be slightly less percentage of tofacitinib, and because I'm impatient to see if my hair will actually grow, and because I seem to be my own doctor in this venture :-/
Will look forward to more of your updates!
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hello vanessa I advise you 3 tablets because tofacinix make 4.2 mg instead of 5mg xeljanz so you will be 12.6mg per day tablets tofacinix you can cut in two what will be 2.1 mg.
my sister takes 3 tofacinix tablets for 4 months she has a cover of 80% very hair can eyebrow and eyelash she will increase to 4 tablet.
I am on xeljanz from istambul for 1 year and for 2 months on tofacinix.
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Nicole,
thank you for posting your story. it has given me the courage to try. I have had AA for 20 yrs which turned into AU a year and a half ago. I am ready to try the drugs. I cannot wear a wig one more day!!! I emailed Dr king last week and submitted the required form. I have a dermatologist who is willing to compound it for me for topical use -thinking it might last because of the cost. i can afford some monthly fees but not $5k a month. I think i make too much $$ to get a coupon from Pfizer for 3 months as it seems like its based on financial situation. Should I reach out to Beacon and try that as it might take months (im in Boston) and pay out of pocket for the first month? I know my insurance wont pay as its not for a RA or one of the required diseases.
Sorry to eb all over the map here :)
sheila
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Hey Sheila!
If King cant get you in you can try Bordone at Columbia
The Phizer 3 month coupon has nothing to do with income. You can get 3 months free once per year. Getting a pharm to fill it with the coupon can be challenging, but Coumbia will send you straight to a pharmacy nearby called Carnegie that will fill it for free.
yes reach out to Beacon
shamiul@beaconmedicare.com.bd
Its cheap for their tofacinix $15 per 30 pills.
No rx needed.
Hope that helps!
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