Hello All--

I have not checked in on this website for a few months, but was surprised to see the discussion started by "AlopeciaDestroyedMyLife" back in August 2014. He is bravely documenting his experience in Dr. Brent King's Xeljanz trial at Yale University. 

I am writing to begin documenting MY journey to come. Several months ago, I wrote an email to Dr. King, offering to participate in any trials that may be going on for Alopecia (Xeljanz or anything else). I did not hear back from Dr. King...until last week! He informed me that though nothing new is happening at Yale, there is a group of researchers at Stanford University who are attempting to replicate his trails with the hopes that something will be approved by the FDA or drug companies in the future. I spoke on the phone to one of the lead researchers, Dr. Milene Crispin, and I have met the criteria to participate in the Stanford trails come mid-January, 2015.

First, here is the pertinent information for the Stanford trail if anyone else out there wants to try and get involved.  Please contact:

Milene Crispin

mcrispin@stanford.edu

I advise you first read up on the case studies at Yale, led by Dr. Brett King before you reach out to Dr. Crispin. The drug in the Stanford trial will be Xeljanz (tofacitnib citrate), and treatment duration will be 3 months, with 3 moths following of monitoring. I do not yet know the dosage. According to Dr. Crispin, the relatively short time on the drug is to focus on the premise that AA and AU are one of the very few autoimmune diseases that can be triggered to "shut off" under the right conditions. Conditions such as RA require the patient to be on a potentially dangerous autoimmune suppressant (such as Xeljanz) for the long run, which may put the patient at serious risk for cancer and other diseases. Thus, the Stanford trial will be looking at what the drug will do in the short term.

I share this information with you all to not incite you to jump and contact Dr. Crispin if you are looking to be on Xeljanz longterm. As a mother of three daughters, I do not want to willingly put myself at risk for potentially life-threatening diseases over my hair loss. HOWEVER, I also support the research that has been rapidly growing and want to be a pioneer for the cause. Nothing will get accomplished down the road if these trials are not allowed to proceed. It is a complicated choice to make, but a personal one for all. 

Today, I officially begin sharing my experience to come with the Stanford trial. I am 45 years old, and I experienced my first attack of AA in 2007 (age 38) with a subsequent attack in 2008 (age 39). By early 2009, all my hair began to grow back on its own. I was undergoing DNCB treatment through Dr. Richard Strick in Los Angeles, but I cannot determine what role the topical drug had in restoring my hair regrowth. Frankly, I think it just grew back on its own because my immune system decided to "shut off" the attack on my hair follicles. 

For almost exactly 3 years that followed, my hair grew back completely with its original color. I was delighted and thought I was in the clear. Then, in December 2012, following a severe emotional crisis and a bout with mercury poisoning (from eating fish!), my AA returned. For the next year, I battled slow, constant hair loss, with small signs of regrowth, but then subsequent loss again. By December 2013, my scalp was so affected that I finally shaved my head. In May, 2014, I started noticing hair loss on the rest of my body, and by July 2014, I had advanced into AU. I returned to Dr. Strick to try DNCB treatment on my scalp again. He said I had a 70-80% chance of regrowth, but 6 months later, no regrowth whatsoever. I was planning on giving the DNCB a couple more months, until I heard from the Stanford researchers. They require that I not be on any treatment for my AU one month prior to taking the Xeljanz. So, I have stopped the DNCB. 

My first steps (now that I have qualified for the trials) are to contact my insurance company (I have HealthNet) about obtaining Pre-Authorization  to fly  up to Stanford to start treatment for my AU. I am not telling the insurance company it is a "research trial." I was informed to state that I am going "Out of Network" for a treatment for my AU. I will likely have to contact my dermatologist, Dr. Strick, to get a letter from him declaring that I have been his patient and have been diagnosed with AA or AU for over 6 months. 

I am forewarned that the insurance company may drag along in this process, and when the drug is prescribed to me (in mid January when I fly to Stanford for my first appointment), my insurance will turn it down. However, Pfizer is issuing all trial participants with a "co-pay" card that will allow us to obtain the drug at a convenient price while on the trial, even though our insurance will turn it down. Dr. Crispin said to expect HealthNet to turn down the prescription. Apparently, nearly all subjects of the Yale, Columbia and now Stanford trials have been turned down and had to use the co-pay card. 

I will make my first contact with HealthNet today. I will take you along on my journey through this website with the purpose of opening up the gates of communication. Wish me luck!

--Susan