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Xeljanz Users...Let's Stay Connected Here in 2016!
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
Replies to This Discussion
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Permalink Reply by lindadarnell on
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Thank you so much for all the information. I have my 2nd appointment with Dr. Oro at Stanford tomorrow. I was referred to Stanford from my Doctor at Kaiser so I'm not part of the study. Thank God Kaiser is covering the cost of my Xeljanz right now. I'm about 2 1/2 months in and have very faint fuzz on my scalp and a few hairs on my eyebrows. I am so excited! I don't know how long Kaiser will cover this medication but I hope it will be forever.
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Permalink Reply by Susan McAdams on
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Lisa--
That is great news that Kaiser is covering the cost of the meds! Dr. Ko's assistant (I forget her name!) was telling me that she has been the one making calls to the insurance companies to lobby for coverage. So far, she has met some success with both Kaiser and Cigna. I just recently switched insurance from Healthnet to Blue Shield of CA. The assistant told me she will call Blue Shield and try to get me approved for coverage. I'm not banking on it, but I appreciate her efforts.
You are definitely on your way! To see any regrowth at 2 1/2 months in on the regular dosage (I assume you are on the 5mg twice daily dose?) is ahead of schedule compared to those who did the trial. Dr. Ko said everyone was different when it came to initial regrowth. Some saw hair within the first 1-3 months. Others, like myself, didn't see it until after the 3-month mark. Some took longer or had to increase their dosage to 3 pills a day. At least one patient was on 4 pills to get that needed jumpstart. But once hair began appearing, everyone progressed in pretty-much the same pattern. Those of us in the trial who are approaching the 1-year mark all have close to or complete regrowth! I still have a couple small patches--around my scalp perimeter, which is common--but when Dr. Ko examined them closely, he said he can see new hair beginning to poke through. You will likely see white or colorless regrowth for awhile. But you can expect to then see dark shadows appear that will be your hair as you remember it! I have more gray than I used to, but I am 47 and that is expected. But a nice, new dye job did the trick. Can't wait to see your photos!
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Yes, I am on 5mg twice a day dosage. I'll post some pictures soon. Do you know how long other patients were on 2 a day before they were increased?
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Lisa--
Like I stated above, it varies for each patient. Most people in the Stanford trial received the 5mg 2x daily dose. Some got regrowth as early (or even earlier than you), others took 3-4 months to see anything happening. And some had their dosage increased because it was taking them even longer. It is all a crap shoot. And it doesn't matter if one has AA or AU or if they had it for years or not so long. It was random. So you are one of the very lucky ones to see such early regrowth--even though it is so faint at present. Buy yourself some great smelling shampoo and get ready to reclaim your life!!!
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Hi Susan:
My name is Linda by the way. When I went to see Dr. Oro last week he said I had 20% growth (Yayyyyy!) I have an appointment to see Dr. Ko in February. He also said that after I have been on the meds for 3 full months they might consider increasing my dosage. I'm so excited. He said he could also see some eyebrow and eyelash growth. By the way, I have AU. I'm 59 years old and had my first outbreak when I was 2 yrs old (according to my parents) that lasted for about 1 year and then completely grew back on its own. My hair started thinning at the top when I was in my 40's but I still had a lot of hair. This time it happened about 4 years ago, I had hair to my waist and within 2 weeks I was completely bald.
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Hi Lisa!
That is great that you are getting in to see Dr. Ko soon! He is really supportive and answers all of your questions to the best of his ability. So don't be afraid to show up with a list of things to ask him. At 3 months, if you are getting eyebrow/eyelash regrowth AND you have 20% growth on your scalp, you are actually right on track for full regrowth. Frankly, I might wait before upping the dosage. After all, I had ZERO progress 3 months in. It wasn't until the 3 1/2 month mark that I started seeing some faint scalp hairs and the start of eyelashes. But Dr. Ko will know best. Good luck and keep me posted--especially since we both have the same doctor!
--Susan
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Linda, I can't believe Kaiser is covering it now. I was with them a year ago and they flat out refused. I even had my doctor appeal to no avail, so I switched to Carefirst Healthy Blue who covers at 50 percent. Are they covering at 100 percent?
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It took a long time, over a year with lots of back and forth. Yes, they are covering 100% now because I have coverage with my husband's insurance and my insurance through my job. I am on a lot of medications (diabetes, high blood pressure, anemia, and now alopecia) and my medication cost was outrageous without the double coverage. I am blessed!
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Permalink Reply by Xeljanzmiracle on
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CONGRATULATIONS Lindadarnell! You are on your way! I'm happy and excited for you. My hair first "reappeared" after a month on Xeljanz and I and my friends were besides ourselves with joy, jumping up and down and screaming. I'm happy to hear that Kaiser is covering it as well, because my finances are soon to change and I might not qualify for Pfizer's Hardship Program anymore. That is really GREAT news about Kaiser because I heard they weren't covering/prescribing Xeljanz at all, even for RA. What Kaiser are you at in Northern California? And what is the name of your prescribing doctor? If you would like, we can meet in person sometime. My doctors are at UCSF, but I live in Oakland, CA.
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That's amazing star sunshine please keep us updated ! Must be amazing having hair :)
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Hi Starshine,
I started on 10 mg a day on July 2nd, 2015. I saw my very first tiny amounts of growth in August. It's been 7 months since I started and I have white hair on the top of my head, beginning to move towards above my ears now. I can see on the front of my head that dark hairs are growing in - I first noticed them about 4 weeks ago (it was just a few hairs at first, now it's about 75.) I have 1 dark left eyebrow. It seems like nothing on my right eye, and maybe 30% on my left eye, all blonde.
Since I continue to see the dark hairs growing on my head, I'm still confident that this is a process for me that I have to be very patient with.
I traveled to India in December and I could not get any travel vaccinations or take the anti-malaria medicine, and I didn't get even a little bit sick. I was so nervous about it, but I was just fine!
I think about dyeing my hair a few times a week, but I'm afraid then I won't be able to keep track of the new dark hair regrowth coming in, that I just leave it. I know it's there. that's all that matters!
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Congratulations HS! I think its a good idea to NOT DYE your hair. Mine was blondish/white and sticking out like a porcupine and now its almost all dark and I have a teeny, curly "fro".
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