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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 Susan McAdams on
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Thank you for your kind words. We just all have to be in this together, as you stated. And we all have different stories and loved ones affected by this awful condition. For me, I am trying to reclaim the life I had. Plus, I have three daughters who look up to me. I want to teach them that whatever challenges they may face in life, never, ever give up the fight. I hope none of you on this site do, either.
Attached, is a photo of my hair regrowth to date. Four months ago, I did not have a hair on my head. Nor eyebrows, nor eyelashes. It takes time. I have a ways to go before I can put away my wigs. But I believe it will happen.
--Susan - Attachments:
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image.jpg, 1.6 MB
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This is at the end of 7 months on Xeljanz. It took about 3 months to start seeing hair beginning to come in. That is normal, considering the natural hair growth cycle is 3 months. That's why anyone on the drug has to be patient and not expect to see much of anything before Month 3. Most of the dark hair you see (you can't teally see the early fine hairs in other places in the photo) grew in over the past 6 weeks. Now that it's kicking in, it's coming in fast!
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Permalink Reply by 3ebdie on
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Congratz with the results Susan! What's the game plan from now on? Are you going to stick with Xeljanz and for how long? And do you know when the study results will be published from the stanford trial?
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I am now beginning Month 9. My plan, moving forward, is to stay on as a post-trial patient with Dr. Ko up at Stanford. I have a prescription in place for the next year, and I have agreed to fly back up to Stanford from Los Angeles every 3 months or so to document progress and decide how to proceed with my medication. Dr. Ko and I both concur that it makes sense to stay on the same drug dosage (5mg 2x/day) until I have full regrowth on my head. I'm really progressing along! Once we get to a place where I can put away my wigs, we will begin discussion about whether to slowly reduce the drug amount or frequency. We will cross that bridge when we come to it. All I'm thinking about now is putting my wigs in storage by the holidays. If I can get to that place, I'm going on a beach destination solo where I can feel the ocean breeze on my head! Here are a couple more recent photos. Basically, I'm waiting for the spots over my ears and innthe lower back of my head to get dark. There is fine, whitish hair in all areas--it's just not dark and full yet in those last areas. Once I'm there, I'm dying it and going Charleze Theron from Mad Max!
--Susan - Attachments:
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Absolutely stunning results there! So happy for you. I am going to start Xeljanz soon I hope. Any side effects so far? Do you feel well, blood work oke etcetera?
Oh and how about your lashes and eyebrows?
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No side effects since I started the drug, and my bloodwork has been totally normal. And yes, eyelashes and eyebrows are back! I went into AU about 18 months ago. But after 3 months on Xeljanz, I started seeing my eyelashes and eyebrows returning. I can finally buy mascara again. Everything is coming back. The one downside? The cost! I went to pick up my RX at Costco yesterday (I switched to Costco from CVS because they honor a California RX coupon that gives me $700 off the drug) and Costco informed me the base price of Xeljanz just increased! It used to be around $2,700-$2,800 per month. Now the base price is almost $3,300! So I had to pay almost $2,600 this month. WTF? Why is Pfizer jacking up the price of this drug? Aren't we being gouged enough?
--Susan
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Pharmaceuticals..... :(
Anyway I am very pleased even your eyebrows and lashes are coming back. More pictures whenever you like to post them are highly appreciated to keep the good spirit :)
Other goods news: baricitinib is just one phase3 trial away from a FDA filing for arthritis (results expected end of this year). They, in contrary to Pfizer/Xeljanz, don't have any RA drug at the moment. Pfizer has Enbrel (tnf alpha inhibitor). So they like to keep the price of Xeljanz high so they don't disturb their Enbrel market. When baricitinib (jak1/2) inhibitor reaches the market mid 2017 (as the filing takes also a year or so to process for the FDA) I am sure Xeljanz (which isn't doing great in Europe as they have been refused by the EMA) will be under huge pressure.... so a price revenge and cheaper drugs for all of us!
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Permalink Reply by sadele on
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Hi Susan,
I'm so happy for you and your progress! Seeing your pictures makes my heart happy for you :) I was able to go down to Mexico City and get 4 boxes for $3100... Perhaps look into going that route? You can get as many boxes as you need in one trip. I'm on 20mg a day and starting my 2nd month, I've just in the last 2 weeks noticed growth on my head. It's very encouraging!
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Forgive my ignorance in these matters, but how does one go get the meds in Mexico City? Do you need to have an RX to buy the Xeljanz? And where did you go? Is there a particular pharmacy you recommend? How do you know for sure that you're getting the real drug? I mean, what's to stop a Mexican pharmacy from supplying fake drugs? Any info would be appreciated.
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About 85% there after 10 months on Xeljanz. The few stubborn spots DO have fine hair coming in, though you can't see in the photos. Eyebrows and eyelashes 100% back.
All I want for Christmas are my sideburns back!
--Susan - Attachments:
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Permalink Reply by Seahawks Dad on
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Thank you for sharing your journey...you are one of the original pioneers and have given many of us the courage to proceed with our experiences. My daughter is going on month 4 with 100 percent growth including eye brows and eye lashes. Keep the updates coming! Best of luck...
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