Xeljanz (Tofacitinib Citrate): My experience on the trial

I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.

I thought it would be nice for everyone if I documented my progress on here. 

Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.

The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results. 

I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.

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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Permalink Reply by 3ebdie on January 27, 2016 at 7:12am

Hey. I am very happy that the Xeljanz pills work for your daughter!!

So you have been prescribed the cream by Dr.King as well? In that case I don't understand the fact that you had to provide the pharmacy with the pills to convert them into a cream. Sp06 for example just had to pay 350 bucks for a 30g gram. I am just asking to verify you have been using the same cream as the others on this forum. The name was:  Tofactinib 2% lipoderm base cream. Same as yours?

Permalink Reply by Stressedmom on January 27, 2016 at 7:39am
Yes same
Not Dr King though
We did this 6 months ago and the pills were used before they located the powder alternative
Permalink Reply by 3ebdie on January 27, 2016 at 9:02am

May I ask you how you got the cream from this compounding pharmacy in Philadelphia? I would like to try this cream first as well before I start the pills. But as I am from Europe I am more than willing to travel to the States to buy the cream. However I just need a doctor first I guess who is willing to help me through a compounding pharmacy? Or can I just call this compounding pharmacy for the cream? 

Please keep us updated about your daughter's progress with the pills! All the best. 

Permalink Reply by Xeljanzmiracle on January 27, 2016 at 9:57am
Hey 3eddie, there are two people on our forum that are going to Instanbul to get Xeljanz and check on a cream version there TOMORROW and Sunday. If Topical X is available there, that would save you having to travel to the U.S. etc. and you wouldnt need a doctor's prescription. Dr. Who is also going to check on Topical X and Topical R (Ruxolitinib) in Switzerland, as he is traveling there now.
Permalink Reply by Stressedmom on January 27, 2016 at 12:16pm

Our physician, a pediatric dermatologist, prescribed the cream for the pharmacy to fill it.

Permalink Reply by Xeljanzmiracle on January 27, 2016 at 8:44am
Congratulations on your improved growth Cmmd30!
Permalink Reply by ujjain on January 27, 2016 at 5:17am

I've booked my flight to Istanbul. I'm flying tomorrow at 16:45. Let's hope all goes well. :)

Permalink Reply by Toxicmosquitoaf on January 27, 2016 at 7:59am

Wow nice, please do tell us what happened!

Permalink Reply by Aurora Sophie on January 27, 2016 at 8:24am

Hi.

I am going on Sunday to Istanbul, and I have phoned the pharmacy and just has to pick up the medicine.

I will phone ones more today and ask about the cream and price.

Permalink Reply by Xeljanzmiracle on January 27, 2016 at 8:41am
Wonderful Aurora Sophie! Too bad you and Ujjain aren't going to be in Turkey at the same time. What is the name of the pharmacy you called to order the Xeljanz in advance and what is their phone number?
Permalink Reply by Aurora Sophie on January 27, 2016 at 10:28am

:-)

Rebul pharmacy

Adresse: Şht. Muhtar, 34435 İstanbul, Tyrkia
Telefon+90 212 251 3142
yeah, I am taking 1 week holiday at the same time:-)
How long is Ujjain in Istanbul? I am there one week.
Permalink Reply by ujjain on January 27, 2016 at 10:25am

I called the Ayasofia pharmacy and they said that you have to first order in person, then wait 6 hours or 1 day and collect it. So going there Friday morning and collecting Friday later or Saturday should be all fine, they are closed Sunday.

You were able to already make the order over the phone or ask them to get it in stock in advance?

I am flying back Sunday morning. I wouldn't mind meeting up with anybody who'd happen to be in Istanbul though.

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