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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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Wow! That is so fantastic--in only 4 months! I am so happy to read that good news. I know that there have been many posts on this website from people who stress the potential dangers of Xeljanz, thus possibly scaring away a lot of folks who are thinking about trying the drug. I am not sure WHY these people are doing that--especially if they themselves have not tried the drug. Are their own personal fears--which I am not going to discount not belittle in any way--causing them to increase the fear factor out there for the rest of us? I just don't know. We all know that many, many drugs can have serious side effects. We have to look at our own physical compositions and hereditary backgrounds to decide whether or not to use a particular drug. For example, a man with a history of high blood pressure should not get a prescription for Viagra. It all depends on the individual and his/her makeup. Xeljanz has been around for awhile, now, for RA sufferers, and millions of people take the drug for that disorder. And the results from my Stanford trial as well as Yale's and Columbia's found very few adverse side effects. I have not been in communication with one person who suffered adverse effects from Xeljanz. Is it possible? Of course. Should someone with a compromised immune system or family history of cancers go on Xeljanz? Probably not a wise idea. But please, folks, do not scare everyone based on the side effects you have read on the internet or on the Xeljanz disclaimers. This IS an FDA approved drug--for RA, not alopecia yet--so let people make educated decisions about whether or not to try it.
I am really happy to read about so many success stories. Finally, we have SOMETHING that works for so many!
--Susan
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Permalink Reply by ALAN7248 on
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Seahawks Dad so nice to hear of your daughters success.
Susan, how are you doing?Alan (ready to take the plunge )
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Good for you, Alan! Please keep us all updated! We all need to stick together, and this is the best way to learn about this drug!
Fingers crossed!
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Alan, did you see my photos and progress post I made last night before this one? In Month 10...I downloaded 3 photos.
--Susan
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Permalink Reply by Xeljanzmiracle on
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Amen Susan!!! I have been saying the same thing to the Haters for months. You are more at risk getting in your car everyday to go to work or to the local grocery store.
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Wow that's amazing so happy for you !! I have been on xeljanz for 4 weeks now . What month did you see growth or vellus hairs? And do you take anything with xeljanz ?
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I didn't see anything until 3 1/2 months in! That was about average for women in the trials. Men tended to get faster growth. Got the white hairs first, then slowly came in. Go back and read my earlier posts--some with photos. And no, didn't take anything else with the drug.
Good luck!
--Susan
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Thank you I will do ! So happy for you gives us all hope . Keep us updated :)
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Hello! I saw Susan's information about the Stanford trial back last February and went down to start the xeljanz process. I started Xeljanz in March and although I dropped out of the trial my Doctor was able to write my rx so I have been on 5mg x2 a day since March. I had zero hair to start off with (was au for almost 2.5 years) and at first I got my eyebrows and lashes back and then around May I started getting terminal hair growth on the top and then it all started filling in week by week. The back is almost 100% but i have a little spot in the back that is just now filling in. I am waiting one more month to go without my wig and am so excited. I have also been on plaquenil for the past 6 months or so and got cortisone injections every 6 weeks I think this drug can work for people out there just stay positive :)
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Permalink Reply by sadele on
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Hi Julie,
All that hair looks beautiful :). Would you mind telling me the dosage of plaqenuil you have been taking and how you've been taking the dosage? For example; do you take your Xeljanz in the a.m and p.m with the plaqenuil or do you take your plaqenuil a few hours after the Xeljanz. I know I'm asking for the little details but you've gotten great success so whatever you're doing is working!
Thank you very much!
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Wow that's amazing !! What are your plans from here? Are you going to stop the shots etc?
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Thank you so much for the nice words.. it's been such a long road of trying almost every treatment out there so this has been truly amazing to actually see results. I don't mind sharing the details at all... I know everyone is different but if something I am doing can work for someone else I think it's important to share! This is my routine.. I take one xeljanz and one plauqnil (200mg) at breakfast around 730am because I get nauseous if I take them on an empty stomach. I then do the same thing (one xeljanz, one 200mg plaquenil) around 4pm with a snack. I got about 4 rounds of shots spaced out over about 7 months and I am not going to get any more because I don't really have any spots to fill in. My plan is to stay on the plaquenil and xeljanz at the same dosage until about Feb and then try to decrease my xeljanz but stay on the plaquenil.. I hope everyone out there gets results as well and if theres any support i can provide I would be happy to help.
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