XELJANZERS! How Many of Us on Xeljanz Now? Where Are You Located?

Yesterday in a Costco parking lot I met my first fellow Xeljanzer (my made-up term) IN PERSON! I saw this pretty bald girl, ran up to her and said "Hey sister" and gave her a hug. We started talking and she told me she has been on Xeljanz for 8 months,and she got it from a local dermatologist, who recommended it to her. She has most of her eyebrows back, but said her hair growth has been erratic and uneven so she purposely still shaves her head. We exchanged phone numbers and plan to keep in touch. It made me wonder if there are any other Xeljanzers, or those that want to get on it, in the San Francisco Bay Area where I live? Alternatively, some of you might want to get together with others in person who live near you. It's one thing to see pictures of hair regrowth, but seeing it first-hand is even better!

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Permalink Reply by Xeljanzmiracle on November 17, 2015 at 5:29am
Welcome DMC2015! When you send in your financial info to Xelsource, also MAIL it to them. They had a problem with their fax server awhile ago and they kept telling me they didn't have all my documents. So finally I went "old school" and they finally received them. To qualify for Hardship Program you also need a letter from your insurance company DENYING coverage. MAIL that in as well with the other documents. I hope you, 2bunnies and Xelhanz2015 start the first Xeljanzer's support system in Connecticut. Send me a picture of the 3 of you when you all get together! Valeri
Permalink Reply by DMC2015 on November 18, 2015 at 8:18am

Thank you for the advice!

Permalink Reply by Xeljanz2015 on November 18, 2015 at 12:11pm

Hi Xeljanzmiracle!

I'm very excited to meet some friends that know exactly what we're going through!

I'll keep you posted!

Permalink Reply by Xeljanzmiracle on November 19, 2015 at 6:42am
Ok thanks! I met a family FROM TURKEY for Brunch last Sunday. The son is 32 years old and went AU about 5years ago. Their friend told them about me growing my hair back on Xeljanz, so They wanted to meet me and see for themselves. We all live ten minutes from each other in Oakland, California. Bottom line is that I encouraged them to make an appointment at UCSF Derm doctor that I go to, as I am their first Xeljanz patient and the staff already knows how to work in conjunction with Pfizer's Xelsource Hardship Program. I have my next Derm follow-up appointment on December 10th and we are hoping to all go together, with back to back appointments. We can even carpool together. Additionally, one of the main supporters on this Board, Jeffrey, lives in San Francisco and hopefully we will meet up and have lunch with him after the appointments.
Permalink Reply by 3ebdie on November 19, 2015 at 7:58am

So which pharmacy in Turkey can we go to then? I would prefer some pharmacy in Istanbul or another big city as they are easy to reach. I would like to buy a supply for 6 months then at once.

Permalink Reply by Xeljanzmiracle on November 19, 2015 at 4:12pm
I will ask the father. He still has family and friends there and goes there once a year to visit. I will start a new discussion about getting Xeljanz in Turkey as soon as I get the info. Where are you living now?
Permalink Reply by Xeljanzmiracle on December 19, 2015 at 4:01am
Hey 3ebdie, I found out you can go to ANY pharmacy in Turkey to get your Xeljanz. You don't need a prescription. The family I met from Turkey said they don't have chain.pharmacies like we have. They are like Mom and Pop stores. If they don't have it in stock, you can order it and usually get it in a few hours.
Permalink Reply by Apple on January 11, 2020 at 10:51am

Can you order it by mail?

Permalink Reply by LauraL on January 29, 2018 at 5:44pm

Hello! Is this blog post still active? :) I came across this exchange while searching for others with AU that have started Xeljanz, (been successful with it), and have then had to stop Xeljanz.

I myself started Xeljanz about 2 years ago - I have AU, and am a patient of Dr. King's. I had tremendous success with Xeljanz - All of my head hair (and body hair) returned within about 6 months of taking 5mg twice daily of Xeljanz.

I've had a full head of hair for about a year and half. Heaven. A couple of months ago, I became pregnant. This will be the first child for my husband & I, and I decided to stop Xeljanz due to the pregnancy.

Within about 4-6 weeks of being off Xeljanz, my hair began to fall out. :( It seemed to happen overnight. I am having a very difficult time, to say the least. I have been searching for others with similar experiences, looking for a bit of encouragement and hope. 

The question I wish I could answer is this: Let's say I do most of - or even all of - my hair again/this time. When I do start back up on Xeljanz, post-pregnancy, will my hair once again return for the second time? My husband & family have been trying to remind me that "it worked the first time and so it will work again". I hope that is true. It would be a reasonable assumption I suppose. And I suppose I have no other option than to believe it.
If there is anyone else out there that has been through anything similar, perhaps had to start, stop, and start Xeljanz again, I would be so very grateful to hear from you. Sincerest thanks & best wishes to all of you. Hang in there everyone. xo
Permalink Reply by Apple on January 11, 2020 at 11:04am

It will grow back once you are on the medication. The medication acts at cellular level to block the body from attacking itself. It’s not a cure once you stop the medication your body  goes right back to attacking itself in even more rapid manner than before. I’ve been on xeljanz since 2014. I finally feel normal. It seems every year the decide to stop giving me the medication. Insurance giving me the run around, Xelsource helped for a few years thus year says I make too much money. I am a Registered Nurse in the ER I help thousands of people, but I can’t help myself. I can not afford $3000.00 a month on xeljanz. I am looking into other avenues to obtain medication. If anyone has a reputable site please contact me. Thanks guys we finally found a rx that works, nobody else has to suffer.

Permalink Reply by bibby on January 7, 2020 at 4:11pm

Based in ireland .I’m on xeljanz for the last 7 months. 10.5mg per day (India supply 4.2mg per pill so 2.5 pills daily.) I have fully regrown eyebrows , beard and (albeit light hair about 70% thickness) full coverage of scalp hair with zero patches. With a spray of hair thickener i look like I have a full head of hair. Going to go 3 pills per day from next week (12.6 mg daily) so just to give alopecia the final kick up the yazoo and thicken to 100% 

Permalink Reply by Apple on January 11, 2020 at 11:05am

What company did you use in India to obtain xeljanz please contact me. Thank you M

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