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Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
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Replies to This Discussion
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Permalink Reply by IcarusAlopecia on
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**2 Month Update**
It's been almost 2 months since I started Xeljanz for my AA.
Here are my results:
1. Still sheddding
2. Growth in my eyelashes, scalp, and chest hair (hahaha)
3. No side effects
Pictures!!
The big spot on the back of my head is slowly growing. I'm really excited and hope that in 1 more month I'll have full regrowth.
It's silly, but, when it does grow back, I can't wait to have a really short haircut. I've kind of had to have a little 'fro to hide the spot for the last 2-3 months.
I'm most excited about my eyelashes. Since I was a kid I've always had, for a guy, very long lashes. When I lost the top portion of my right eyelashes and eyebrows, I really lost symmetry of my face. In photos, something always looked "off". I started to grow blonde hairs but they never turned black. About 3 weeks ago, I noticed black hairs. Then a week passed and some more. And then more!!
I wouldn't say eyelashes on my right eye are 100% back but I'd say they are 75% and I'll take it!
Sadly, my co-pay card ends on this next refill (I'm actually paying out of pocket about 1000 dollars). I'm asking my doctor today to fight insurance. I know I won't be able to continue Xeljanz without insurance.
The photos are:
1. Spot on back
2. Better eyelash for comparison purposes
3. Eyelashes and eyebrows that are growing back
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better eyelash.jpg, 736 KB
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Permalink Reply by Alo-mom on
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Very impressive. You need to call Xelsource asap and see if they can help you get the drug at no charge. This is not the prepay card operation, it has to do with the drug company looking at your income to cost of pills and providing them to you for a reduced or no cost. If you need further help friend me and I will give you all the phone numbers etc. These folks at Xelsource are so nice. I plan on writing the president of Pfizer and telling them what a great staff of folks they have working for them. This does require a doctor to sponsor you being involved and a bit of paperwork but nothing to bad.
It is not about the insurance because this drug is not approved by the FDA for Alopecia only RA. I am sorry to say you will not win this one, but if you do please let me know.
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Thanks Alo-mom
On the contrary, my doctor is the same one as someone on this forum. They got their medication approved for AA after an appeal or two.
I know these things are hard to get approved but worth trying up to the state level. I know this because I had Jaw Surgery last year. Insurance denied me twice and said it was not "medically necessary" and more cosmetic surgery. Upon a 3rd appeal at the state level I was able to get it approved.
I'm going to have my doctor start the 2nd appeal (first one by me got denied) right away and then probably take it to the state. Fingers crossed.
I appreciate the Xelsource info. I'll friend you. I don't think I would qualify as my income is quite a bit above their threshold (over 100k). I'll give it a go though. It's too expensive to pay for each month out of pocket (it's equivalent to another mortgage payment).
Thanks for the help! I really appreciate it!
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Yes, with income as such they may only reduce pricing. My daughter's income was about half of yours. Yes, please stay in touch and hopefully through the Clinical Trials of this drug for AA one day FDA will approve it for AA and then it can be prescribed by Dr.s and insurance will cover. My fingers are crossed and you go get um. :)
Stay in touch, I am a fighter too with insurance companies. GOOD LUCK
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Permalink Reply by Xeljanzmiracle on
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You owe me a HUGE apology for all of the nasty, rude remarks last year.
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Who me?
I just joined this forum this past January 2017
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As IcarusAlopecia. But I'm not deceived.
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@Xeljanzmiracle Um, what?
I have absolutely no idea what you are talking about.
I haven't been on this forum before. I joined in January 2017 due to my alopecia getting bad this past Fall/Winter.
You are completely incorrect and out of line to accuse me of something I have not done. I don't do such things especially online on a support forum.
I do see you post here a lot. Perhaps you should take a moment away from the keyboard, breathe and come back when you've calmed yourself down. Don't accuse a random person for something they are not responsible for.
Thank you! It's Much appreciated. Remember, we are all here for support. Not drama.
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May I ask what your dosage is?
Are you using the Xeljanz co-pay card? I have one and am told that it only works as a supplement to insurance and since insurance denied the prescription, we can't use it. It sounds like your insurance isn't covering it.
We pay $4000/month out of pocket as we wait for our insurance to be resolved.
Great eyelashes and eyebrows Btw!
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Permalink Reply by Jcortez05 on
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If you make less than 75,000 you can qualify for the hardship program .. they send you the medication at no cost but your dr has to sign off on it
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Thank you. We don't qualify for hardship so it's all cash until our insurance approves it.
It's just frustrating that there's $12,000 available through the Xeljanz co-pay card if you have insurance that will cover the medicine, but it's worthless if you have to pay out of pocket.
Fortunately a nearby hospital is doing research and will enroll my son and cover the cost of the medicine when he turns 18, but until then...$$$$...
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