NicoleT
  • Female
  • Brooklyn, NY
  • United States
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NicoleT's Discussions

Update: 1 year on Tobacitinib!

Started this discussion. Last reply by NicoleT on Saturday. 430 Replies

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…Continue

Tags: universalis, totalis, tofacitinib, xeljanz

Tofacitinib Results after 9 Months

Started this discussion. Last reply by Dan Mar 7, 2019. 91 Replies

Hi All,Here are my results after 9 months.Notice, virtually no results until about 5 monthsNote that I kept buzzing my head the entire time, hence no growth in length, just filling in.…Continue

Tofacitinib Results after 7 Month

Started this discussion. Last reply by nb3689 Sep 6, 2019. 91 Replies

HI Guys,I'm on Generic Tofacitinib from Bengladesh.On Aug 10, I increased doseage from 10 mg to 15 mg per day.I started March 1, with not one hair on my head. no eyebrows very few lashes.Here is my…Continue

My Xeljanz REsults after 6 month

Started this discussion. Last reply by Shad Sep 11, 2018. 13 Replies

Hi Guys,Here are pics of my progress on Xeljanz at 6 months from start date with AT.Slowly but surely.I started 10m on March 1.Hard to tell from side profile pic, but Right eyebrow was 100% gone and…Continue

Tags: xeljanz

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Latest Activity

NicoleT and Jules78 are now friends
yesterday
NicoleT replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Yeah it’s stressful times!!! our bodies are going to feel it no matter what! let me know how the appointment goes. Say hi to bordone :) "
Saturday
momx2x2 replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Ok, that makes me feel so much better. Not that I want you to have spots but glad they come and go for you. I have appointment with Bordone next week to see what she says and I had all my test recently and everything looks in good order, but…"
Saturday
NicoleT replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"tough one... i dont like minoxidil . i only had very thin regrowth on the 10mg per day and 15mg per day is what brought the thick regrowth but i know the money is an issue. so frustrating"
Friday
NicoleT replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"HI! I would not increase. Id stay at 16 per day. i think we are just going to go thru bouts of small spots even on our proper dosage in times of stress or hormonal fluctuation. i always have a couple small spots in some stage of regrowth."
Friday
momx2x2 replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"I’ve been on Xeljanz for 16 month, full regrowth. I got a few spots when I started to reduce Dosage and immediately went back up and Spots grew back. but all of a sudden I have two small spots and I’m not sure what to do. my head is…"
Friday
NicoleT replied to Jade's discussion My experience with Ruxolitinib
"well crap. Sounds like we went thru this at right about the same age. Mine was little patches starting in my 20s then full flown AU right about 40 triggerred by IVF Ive never attempted to go off the tofacitanib because i knew all along from the…"
Oct 21
NicoleT replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Found your post. reading over it now then im going to write you back"
Oct 21
NicoleT replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"HI Jade, How interesting..i see they are marking this drug toward AA. I'm doing my own tapering schedule. Basically im just reducing my nightime dosage by half, just 2 nights per week.. BUt i think i will likely just have to stay on my doseage…"
Oct 21
Jade replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Hi Nicole, thanks for this post. I recently posted about my experience being on CTP-543 which is the Jakafi version. I was wondering if you're still on a tapering off schedule. I asked my dr at Stanford and he doesn’t have one for me its…"
Oct 21
Jj_085 replied to NicoleT's discussion Xeljanz from India
"Did you use USD when submitting the transfer?"
Oct 20
Ryan replied to NicoleT's discussion Xeljanz from India
"I also used TransferWise"
Oct 20
Jj_085 replied to NicoleT's discussion Xeljanz from India
"How did you make payment? I've used TransferWise in the past. thanks!"
Oct 20
Nawar replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Looking great thanks for the update , keep us updated this encourage us to continue on the medicine "
Oct 15
Vicki replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Hi Nicole, my hair is really so much thinner than yours at all your stages - i have to keep shaving as to thin to grow. That’s why I am wondering if I should continue. My derm suggested adding oral minoxidil but I don’t want to do that.…"
Oct 14
Manman replied to NicoleT's discussion Xeljanz from India
"in the same situation. mouree insists that my package arrived in the US, but I confirmed with usps that it never left Bangladesh. ordered in march  and it takes like a week to get a response "
Oct 14

Profile Information

Relationship Status:
Married
About Me:
Developed AT during IVF and pregnancy.

Lost all head hair, eyebrows and eyelashes. Started to lose all body hair.
Got all hair back after 10 months on oral Tofacitinib 15 mg per day prescribed by Columbia University in NYC.
Do you have alopecia?
Alopecia totalis
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (13 comments)

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At 11:59pm on October 5, 2020, Apple said…

I have been so thankful fir prescription Hope which has been able to get xeljanz for me at no cost. This program in based in USA if anyone wants to contact them for help it’s amazing. It is really evaluated yearly and you will have time where you don’t have the medication right away that’s why I needed other sources to obtain the only medical treatment that works for alopecia.

At 11:51pm on October 5, 2020, Apple said…

I am also concerned about reparation date. I have medication that will expire by 10/2021. Trying to juggle meds expiring to take first. 

At 11:50pm on October 5, 2020, Apple said…

I bought 1 year supply from beacon it took about a month or longer to arrive. Doc pharma it was 3 month supply arrived quickly and when one shipment was running late they contacted customs it arrived in 24 hours to my front door.

At 11:28pm on October 5, 2020, Apple said…

The company was DOC Parma delivered to my door within 14 days $500. For one month supply.

At 11:18pm on October 5, 2020, Apple said…

I hear that generic xeljanz will be available in USA soon. Has anyone had any news on this? I had my medication from beacon com by deliver right to my home, but it did take time to arrive. I ordered from another company from India and RCVD it promptly but costly.

At 6:45pm on July 7, 2020, Justyna said…

Does anyone there is in touch with dr. Filamer Kabigting from Hudson Dermatology? 
I’m out of country patient and I’m trying to reach him for online consultation.

At 8:44am on January 22, 2020, Apple said…

I have golden 1 credit union ... Fresno, Ca 93711. I cant sleep omg.

At 3:34am on April 7, 2019, Khalil said…
Hello dear,

Can you send my the address of the pharmacy who sealing the same Xeljanz medicine from Bangladesh

Thank you so much
At 10:56am on February 1, 2019, Justyna said…

Wow looks amazing! 

I'll definitely order it!

Congratulations!

Justyna

At 5:39am on February 1, 2019, Justyna said…

Hi Nicole,

sorry for bothering you again.

I just wanted to ask you about Tofacinix - generic version of Xeljanz from India.

How is it? Are you taking it? Does it really work the same as original Xeljanz?

I'm thinking about ordering it...

Justyna

 
 
 

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