Did anyone catch this? - Tofacitinib Citrate

Don't blame me if this is bull-shiz. Thought I should pass it on. I'm always a skeptic so, we'll see.

http://boston.cbslocal.com/2014/06/19/hairless-man-grows-full-head-...

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Permalink Reply by AlopeciaDestroyedMyLife on June 23, 2014 at 5:20pm

Does anyone know if you have to keep taking the drug for the rest of your life ? or can you stop?

Permalink Reply by Tricia on June 23, 2014 at 6:13pm
My skepticism says they are tweaking the drug to make sure we have to take it for the rest of our lives. I guess I need to call my rheumatologist. (Please excuse my spelling.)
Permalink Reply by Debbie on June 23, 2014 at 7:31pm
I'm curious about that as well. I wondering if I'm getting my hopes up.
Permalink Reply by Debbie on June 23, 2014 at 7:32pm
That's what I'm thinking. Am I getting my hopes up?
Permalink Reply by spettro on June 23, 2014 at 7:46pm

I saw this on the news today too. Highly unlikely that the story is bullshit since the drug is actually FDA approved.  However, you are right that it should be treated with a certain degree of skepticism since not all treatments work for everybody the same way.  A major downside would be the side effects and weakening of your immune system would certainly not be beneficial. Trading alopecia for cancer propensity is definitely not worth it.  Although they did mention that this individual suffered no ill side effects and there's talk of creating a cream and doing trials which would dramatically reduce systemic effects ...if any.  It may be that the serum levels of this drug needed to suppress AA may be considerably less for than what's needed to suppress RA.  In any case this would be a hell of lot safer than steroid shots or taking prednisone.  It'll be interesting to see what happens next.      

Permalink Reply by joshua on June 23, 2014 at 8:49pm

Heres another article with the Dr. talking a little more about it.

http://www.ctnow.com/health/connecticut/hc-haar-yale-hair-20140623,...

Permalink Reply by Julie on June 23, 2014 at 9:29pm
I just saw the tv ad for xeljanz for ra..it says for those who methotrexate did not work well for. I am currently trying methotrexate (only two months in..)and am wondering if these drugs are pretty similar?
Permalink Reply by Tallgirl on June 23, 2014 at 11:40pm

   Please see important message below from the National Alopecia Areata Foundation (naaf.org) regarding an immunosuppressant medication that regrew one man's hair who had alopecia as well as the Yale research article on the drug. (Columbia is one of the main research universities for alopecia which is why it is mentioned below.) Laura Ralph is the support and education director of NAAF and Dory Kranz is president and CEO of NAAF.

**********************************************************************************************

Hi Everyone,

 

Many of you may have heard the news about an arthritis medication regrowing hair on a man with psoriasis and alopecia areata universalis. This is very encouraging. Please read Dory’s message to our board of directors (below) as well as our official NAAF statement.

 

Laura Ralph
National Alopecia Areata Foundation
14 Mitchell Boulevard
San Rafael, CA 94903-2050
Phone:415-472-3780
Fax:415-472-5343
 www.naaf.org

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From: Dory Kranz
Sent: Friday, June 20, 2014 7:58 AM

A news article came out yesterday regarding an individual with alopecia areata universalis regrowing hair during an 8 month course of treatment with an oral immunosuppressant - tofacitinib citrate.  Gary and Abby hopped right on this and conferred with our advisors at Columbia University on a response (see below).  The scientific article which will be published in the JID is attached and here is a link to a CBS Boston news article from yesterday.

http://boston.cbslocal.com/2014/06/19/hairless-man-grows-full-head-...

Just for your information, one of the reasons for caution in our exuberance is that tofacitinib is an immunosuppressant, not an immunomodulator, and in the current oral form may have side effects for long term use and we don’t know if the hair regrowth is durable without continued drug use.   Columbia University is seeing promising results with another JAK inhibitor -- ruxolitinib -- in a 10 person study and is expanding to include 2 people with AU.  Based on these promising results, Columbia will start a similar small trial with tofacitinib this summer.  They already have a waiting list for enrollees from the ruxolitinib trial.  

NAAF Response:

The National Alopecia Areata Foundation (NAAF) is encouraged by the results of an 8-month course of treatment conducted by researchers at Yale University School of Medicine in which a 25-year-old male patient with alopecia areata universalis was able to regrow a full head of hair, along with eyebrows, eyelashes, and facial, armpit, and other hair when put on a regimen of tofacitinib citrate, an FDA-approved treatment for arthritis.  The drug has also been successfully used in the treatment of psoriasis.

While we remain hopeful, we wish to remind the alopecia areata community this is a preliminary study with the effects of the drug studied on only one individual.  It should be considered preliminary and not validated at this point, and remains to be further studied in clinical trials.  We encourage the researchers at Yale to pursue a clinical trial and are excited that a clinical trial with this drug will be starting at Columbia University this summer.

Feel free to reach out if you have any questions.  See (most of) you in San Antonio soon.

Dory

Dory Kranz

President & Chief Executive Officer

National Alopecia Areata Foundation

14 Mitchell Boulevard, San Rafael, CA  94903       415-472-3780

 

Check out our Alopecia Areata Treatment Development Program Video

 

Upcoming Out of Office Schedule

      June 24-30 San Antonio, TX -- NAAF Annual Patient and Family Conference

      September 9-11 Washington DC -- NAAF Legislative Liaison meetings on Capitol Hill

 

NAAF logo color

 

 

 

Permalink Reply by CMF on June 24, 2014 at 5:25pm

My mum told me about this today and we sent Brett King and e-mail but I'm not sure he will reply... I'm going to try and see my doctor tomorrow and see what he thinks about this. I live in Europe and apparently that drug is not aviable here, though. Do any of you know if it's possible to get it somehow? And how we can apply for trials? :/ I admire those of you who are sceptical.. I'm afraid I've already got my hopes up.

Permalink Reply by AlopeciaDestroyedMyLife on June 24, 2014 at 5:37pm

I'm from the UK but have already made an appointment to see Dr King, I will do everything for hair and have tried everything I hope to god this will work.

Permalink Reply by CMF on June 24, 2014 at 5:45pm

So you're going to the US? How did you make an appointment? (:

Permalink Reply by Ava on July 1, 2014 at 8:33pm

Good for you and the best of luck. I am from Ireland so please let me know how you get on. Is anyone going to try Berberine first, the natural remedy that blocks Jak 3 too?? I was thinking I would give that a go first?

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