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My Stanford trial experience, part 2 (Xeljanz)
My first post on this topic got buried somewhere in "Discussion" purgatory, so I am providing an update on my experience as a participant in the Stanford trial for Xeljanz...
After contacting Dr. King at Yale several months ago, he finally got back to me last December to inform me that two doctors at Stanford University are conducting a trial to hopefully replicate his findings. I jumped at the opportunity and got in touch with Dr. Milene Crispin at Stanford. Working with Dr. Justin Ko, they are conducting a trial where participants take 5mg of Xeljanz twice daily for 3 months. Then, we are monitored for 3 months after the drug is finished to see what happens.
Participants in the trial are not privy to results of other trial members, but both doctors have told me they are definitely seeing some positive results on not only patients with AA, but AU as well. I struggled with a 2-year battle of AA back in 2007-8 and then went into complete remission for three years. All my hair grew back. However, I relpased in early 2013 following some very stressful times and a reoccurrence of mercury poisoning, and over the course of that year, watched my hair fall out completely. By January 2014, I was shaving my head and turning to wigs. In June 2014, I began to progress into AU, where I am at to this day. I lost everything.
I did my research on Xeljanz and all its potential risks, and I talked to two friends who have been on JAK Inhibitors for RA (not Xeljanz because it is so new) for the longterm (years), and they are not dropping dead of cancer. There are millions of RA patients out there on JAK Inhibitors, and as long as they are being responsibly monitored by their doctors monthly, I believe the risks are not as bad as the literature warns. Certainly, everyone is different, so I am not going to elaborate on the odds of side effects. But my medical history and bloodwork showed that I am a good candidate for giving Xeljanz a shot. I don't know if any of you have seen them, but there are ads for Xeljanz popping up in magazines. Pfizer is really banking on this drug.
So here is where I am as of this date...I flew up from Los Angeles to Stanford on 01/14/15 for my diagnostic appointment in the trial. Dr. Ko took photos of my scalp and nails, did a small scalp biopsy, walked me through a ton of paperwork, sent me to the lab one floor down to have blood drawn, and sent me home with a co-pay card from Pfizer that will cover a total of $8,000 over the three-month period that I will take the drug. Yes, you read that correctly. Xeljanz costs approximately $3,000 for a one-month supply! Thus, I will be paying $1,000 out-of-pocket over the course of this trial. It is worth it to me to see what happens. I have to pay for my own plane tickets and rental cars during the trial because I must fly up to Stanford each month for 6 months total to be monitored. Thus, if you are considering this trial (or the one at Columbia University) understand that it will cost you.
TODAY, I finally got the Xeljanz in hand after 3 weeks of winding through more red tape than one can imagine possible. The doctors gave me guidelines on how to get the drug using the co-pay card issued from Pfizer for this trial, but depending on one's health insurance company, the process can become one, big cluster-fuck! It certainly was for me. I have Healthnet PPO, just so you know.
Now, you may wonder what my health insurance has to do with this since they will NOT approve Xeljanz for AU (NO insurance will because it is not FDA approved for Alopecia). However, pre-authorization is necessary to begin the trial and then to get the ball rolling with the pharmacy. Before my first trip to Stanford, I had to get my local dermatologist to send a fax to Healthnet telling them I was flying to Stanford to "receive treatment for AU that is not available to me here in Los Angeles." I was told NOT to have my dermatologist state it is a "medical trial." That could delay things. I got the pre-authorization to go do an out-of-network office visit up at Stanford. That was the easy part.
The logistic nightmare came when I then tried to get the drug with Pfizer's co-pay card. I will not go into all the details here or I could write a novel. I will just say that the ONLY pharmacy that is getting the process completed and getting Xeljanz into trial members' hands is the CVS Specialty Compounding Pharmacy. You submit your RX to your local CVS, and they must send it off to this compounding branch (it has a 1-800 number) where they process the prescription. It took three weeks of back and forth between more pre-authorizations needed from Healthnet, faxes from the doctors at Stanford, getting the co-pay card processed, and ultimately getting the drug mailed to me (or your local CVS where you can pick it up). It took a lot of effort, but I not only got the drug, but I paved the way for future trial members by getting a representative at the CVS Specialty Center to send out a company-wide email memo so any representative getting the prescription and co-pay card should now know what to do. I wouldn't bet on it, though. I spoke to many folks on that 1-800 number who had no clue how to get the Pfizer co-pay card processed. HOWEVER, if you are reading this and decide to partake in either the Stanford or Columbia trial, feel free to email me at the address under my name at the end of this post. I am happy to talk you through the step-by-step process required for getting the drug in your hands. I don't want anyone to go through the shit-storm I battled.
So, now I begin the trial in earnest. I took my first pill today. I will continue to post throughout the 6 months that I am on the trial to document my progress (if I have any). Who knows what will come out of this? Maybe nothing. But, I feel very strongly about supporting the Alopecia community by participating in this trial. It is outrageous that there is still no reliable drug available for our disorder, and the FDA must be convinced that JAK Inhibitors such as Xeljanz DO work for some Alopecia patients. Currently, Pfizer is trying to get Xeljanz approved for psoriasis since the case study patient at Yale saw dramatic improvement to not only his RA and AU but severe psoriasis. Pfizer is heavily advertising Xeljanz in the magazines for RA because that is the only condition it is currently FDA approved for. But, I learned that Pfizer lost $114 million last year on Xeljanz because there were simply not enough RA patients willing to switch to this new drug. Pfizer is very invested in Xeljanz as a future cash cow. That is one reason they are providing the $8,000 co-pay coverage for trial members! They are hoping to get their drug FDA approved for more than RA or they will never make money on it. This is a very positive sign for the Alopecia community, I believe. We trial members are the pioneers.
Again, if you are reading this and are interested in the Stanford trial, call Dr. Milene Crispin ASAP at 603-667-1310. When I visited her offices on 01/14, there were about 20 trial members. They will cap the number at 40. I know Dr. Crispin has been bombarded with emails. So don't delay emailing her if you are interested. She will contact you by phone and talk you through the trial conditions and find out if you meet the first qualifications to come to the clinic for the first consultation visit. If you are already in the trial and are trying to get through the red tape to get the drug, email me and we can exchange numbers, and I will talk you through the process.
Wish me luck! My journey is finally under way!
--Susan
Replies to This Discussion
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Permalink Reply by Toxicmosquitoaf on
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That is only for US, is there any trial in EU ?
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Permalink Reply by raffaella saccardo on
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In Europe has been not approved.
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Hi raffella,if you look at Nick's post again please note that it is a topical version of ruxolitinib which is going on trial,this drug is approved in eu it's xeljanz which isn't.
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Xeljanz has been not approved in Europe. You can buy it in der Switzerland (Svizzera)
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I have been following the site for about nine months, Julie how come we haven't heard from You???
Alan
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Hello All,
Sorry I don't have the time to read all 14 pages so forgive me if I am repeating what anyone else has mentioned earlier.
I have had AU for close to 20 years and have 2 sons (17 and 11) with it as well. It has been a huge part of our lives for a very long time and after trying nearly every type of topical cream, solutions, tablets as well as light therapy Xeljanz does seem like a breath of fresh air.I really have given up many years ago at finding any hope of a solution to grow my/our hair back though some of the results here with Xeljanz are amazing.
We live in Australia and I was wondering if anyone in OZ has a supplier or has contacts for any trial, or can advise the process to get my hands on this GodSend product.
Any advise or assistance would be highly appreciated as every detail I have researched does point to the US or elsewhere.
Regards Alex
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Hi Alex,
I am on Xeljanz I live near Canberra. As far as I know it us not approved for AA or AU at the moment here. I have rheumatoid arthritis so I was allowed on it. The very first biologic drug I had (Enbrel) caused my AA, the next on caused AU. I think it caused it anyway but a scientist may argue it as a Coincidence! I started Xeljanz on June 6 and have a full crown of hair eyebrows growing and also eyelashes in the early stages. It is working on the RA as well. Don't know where you live but if in Melbourne see Dr Sinclair, in south Melb, in Canberra see Dr Leona Yip both are dermatologists.
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Hello Annipanni and thanks for your reply.
Glad to hear your hair has grown back though I guess the tradeoff is having RA so probably not the best combination to have.
I am in Perth WA so just a touch isolated from you guys. I have been to a dermatologist in the past along with my boys and have exhausted every avenue... It gets so frustrating. Because you have RA does your health insurance cover Xeljanz or do you have to cover the cost yourself ?
I can get a script for xeljanz if need be though considering there are 3 in my family with it I assume the cost would be around 10K per month.... Grrr... Totally out of reach really.I have heard about the copay system through Pfizer though I think it may only be available in the US ?? Not sure.
I did email Pfizer Australia yesterday morning though still no reply.
Any help would be appreciated.Regards Alex
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Permalink Reply by Suzie on
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Annipanni, I also have RA and when I was on Orencia, I swear that cause my AA. I was on Enbrel and Humira and never had any issues with my hair....it just stopped working for me.
I still have hair, but it thinned out terribly after the Orencia, so I dediced to get off of it. I am also starting Xeljanz soon. Has it helped with the RA as well and the AA? Did you get any more shedding?
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Annipanni, I also have RA and when I was on Orencia, I swear that cause my AA. I was on Enbrel and Humira and never had any issues with my hair....it just stopped working for me.
I still have hair, but it thinned out terribly after the Orencia, so I dediced to get off of it. I am also starting Xeljanz soon. Has it helped with the RA as well and the AA? Did you get any more shedding?
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Hello Susan,
I participated in the February 2015 Standford Xeljanz trial with
Dr. Ko. My experience was similar to yours as I also used the 3 month copay card provided by Dr. Ko. During the trial my hair grew significantly but I unfortunately lost all my hair a month after the trial was over. I was not able to afford the cost of the medication and had to completely stop taking it. I was fortunate enough to restart in August of 2016 with a copay card and now I have continued to receive Xeljanz free of cost due to the efforts of Dr.Ko and his amazing nurse to help me qualify for Xelsource. I have qualified for free Xeljanz until December 2016, after that I am not sure how I will be able to continue to take Xeljanz. In these 4 months of taking Xeljanz I have grown all my body hair to its regular length and all my head hair is about 1 to 2 inches long . I can't not even imagine stopping Xeljanz for a second time because my insurance has denied multiple times my requests to approve Xeljanz. My husband and I are already trying to figure out how we can make the financial sacrifice and continue to buy it. I can only hope that I will qualify for Xelsource. Thanks for sharing your story, reading your story gave me the courage to write about mine.
Alma
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I hope you get approved for it, if not, if you can take a trip to Turkey, you could purchase one years supply of Xeljanz (providing you are on a dose of 2 x 5mg daily, it would involve buying 13 boxes of 56 tablets), for around 7,000 dollars. In Turkey the cost of Xeljanz at the moment is about 540 dollars for 56 tablets of 5mg. Take some of your current medicine with you, as the pharmacist will want to see you are on this medication from my experience. Hope this helps.
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