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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AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

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Permalink Reply by Villa fan on March 23, 2017 at 4:06pm

Folks,

For information, Xeljanz in Turkey has increased in price from 20th February this year.  It is now 1995 Lira per box of 56 (as of today, it's roughly about £445 or $550).

Also, if you are going into Istanbul, the following Pharmacies are showing part of Global Blue (you can claim the KDR/VAT back, mins Global Blue's commission apparently).

- Barbaros Bulvar

- Berin

- Fulya

- Konak

- Onur

In relation to Global Blue, I must stress that this is information I obtained whilst there, I did not use the service myself, as I had already purchased.

Hope the information is useful to someone 

Permalink Reply by Rascalx2 on March 24, 2017 at 9:02am
So, Ive been on xeljanz for 8 months, have lots of white hair growth/peach fuzz sides of head, side burns, very faint eyebrows, and eyelashes. Problem is I have been wheezing with a cough, bp is definatley elevated (which has always been perfect). Been alternating 15/20 mgs every other day ( which is when vrowth started after increasing dosage to 15/20) My diet could not be better. I fear that after all this patience I have had with meds I may have to stop taking it and lose all progress/ growth. SUCKS!
Permalink Reply by Merry on March 24, 2017 at 4:13pm

RascalX2, don't despair so soon. The cough can be lots of things like allergies or a cold. Is it a new symptom? Have you seen a doctor about the cough? My bp was always perfect before xeljanz as well. But now I have to take medicine to keep in down. I am willing to do that as long as it can be controlled. My doctor has me on Allegra also. She hopes it will decrease inflamation, but this could help your cough if it is caused by allergies. I guess what I'm trying to say is that there is no reason to think you'll have to stop taking xeljanz. Keep your chin up and be sure your doctor knows about your cough and elevated bp. Good luck my friend!

Permalink Reply by Villa fan on March 24, 2017 at 1:42pm

Hi,

Before starting Xeljanz, I would strongly advise getting an appointment with a Doctor in America and getting a consultation first (ideally someone like Dr Brett King), as you will need tests before commencing Xeljanz and be monitored during the taking of Xeljanz.  Also you might be able to get a supply to get you started.   

In relation to your questions of getting Xeljanz in Turkey, I wasn't asked to produce a prescription and I've had no problem bringing it back.  In relation to the pharmacy, you could contact them before you go if you wanted.  The pharmacy at Istanbul Airport for example is Gunay Eczanesi, and the e-mail address for the pharmacy at Istanbul Airport is bilgi@gunayeczanesi.com.

In relation to the bloods, yes the NHS Doctor at my Health Centre monitors my blood. 

Permalink Reply by zarrin on April 6, 2017 at 1:55am
Dear Villa fan,
Thank you so much for useful information . As you know this medication is not available and not approved for Alopecia in EU and no physician accept to prescribe it.I am going to buy it in Turkey . Does the pharmacy request a prescription?
Permalink Reply by zarrin on April 6, 2017 at 2:48pm
HiVilla fan,

I am surprised by the price of Xeljanz in Turkey.I searched the price of ziljanz in online Canadian pharmacies about 2100 US Dollar for 30 pills.How I can be sure the medication which I am going to buy in Turkey is not fake? I am going to Turkey next week could you please let me know can I trust this medication from Turkey?
Permalink Reply by JellyBeanToes on March 26, 2017 at 2:48am
There is no cure for alopecia. It's sad when people get suckered into spending lots of money on things like this. Any hair regrowth on these things is completely coincidental. If we could actually see the results of everyone who took this we'd quickly find out it just doesn't work I mean if it did we'd all be 'fixed' right. Having said that I'm still waiting for a cure & have never been part of a trial. I would like to be part of a trial though. How would I do that? Anyone?
Permalink Reply by Villa fan on March 26, 2017 at 3:36am
There is no cure for lots of autoimmune illnesses, there is however effective treatments (perhaps not for everyone), as what Xeljanx has been to my Alopecia. Having seen the results of Xeljanz first hand, I feel qualified to say this I would also point to recent findings and statements by Dr Angelo Christiano, Dr Dr Brett King etc, in relation to Jak Inhibitors.

Go to the website Clinical Trials and check for Alopecia areata trials, it should list where trials are actively recuiting
Permalink Reply by Patchesforlife on March 26, 2017 at 9:23am
Thank you for giving us hope. It is really sad when people are so pessimestic and aoread thr negative enrgy. Thats the last thing we need
Permalink Reply by JellyBeanToes on July 25, 2017 at 12:59am
I don't want to be negative or make anyone feel like there's no hope, hey what do I know! I bloody hope I'm wrong!
Permalink Reply by IcarusAlopecia on March 26, 2017 at 11:11am

Almost coming on 3 months.

Went to dermatologist and she was pleased with my growth, especially my eyebrows (full grown back in) and eyelashes (90% in).

We are on an appeal with insurance which is making me a little nervous but I'm hopeful as she's gotten it through before.

Update:

1. Growth on scalp slow and steady. (pictures attached)

2. Eyebrow and eyelashes major growth! So happy because it really brings back the balance of my eyes.

3. Still shedding but not as much. Still hairs on my pillow. I jokingly told my cleaning lady to start collecting them to make me a wig should I ever need it. 

Symptoms:

1. No sinus, colds or anything like that.

2. Weight gain. It was just winter. I can't honestly say I didn't gain a little but I don't believe it has anything to do with Xeljanz. These 5lbs extra I'm carrying is purely winter weight. I can make a better assessment come May-June

3. Slight headaches but I'm also doing a high protein diet for the last few weeks. That could be it.

How I got the medicine:

Co-pay card. It got me 3 bottles. I'm on my last bottle :(  2 weeks left and will have to probably pay out of pocket until insurance approves.

Other Treatments:

Minoxidil 5% 2x a day (when I remember or can be bothered. Sometimes I rush out of the house and am like, eh, screw it)

Finasteride (propecia) daily

Biotin, men's multivitamin that I've always taken since before Alopecia

No specific diet. Hair be damned. I love my pizza, my wine, my occasional sweets. I'm not giving that  up.

Exercise. I exercise 5x per week. Running or weights.

Cortisone shots: We skipped them this month to my disappointment. Reason being, while insurance looks over my case, we don't want them to say that the shots are what are solely creating growth.

Pictures:

Attached is a picture of my eyebrows/eyelashes. Really happy about this as it's tough to cover that up. I think in the summer I pencilled in a littttlllee bit of they eyebrow and friend lovingly made a joke about it. I never repeated that again! haha!

Back of scalp. Here is where the tough spots are. I had a HUGE bald streak which is getting smaller and smaller. I put a side by side so you can see the progress from Feb 20 to Mar 26. Big improvement.

Lastly, SMILE  right now. Everyone! Alopecia is tough but we're all tougher.  Do you, be you and be happy! Whatever and however!

Good luck my fellow Alopecia warriors! Update you in a month!

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Permalink Reply by Return_life on March 26, 2017 at 12:10pm
awesome progress. your eyebrows came back thick that's awesome.
thanks for the motivation also.

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