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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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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by mtran2000 on
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I guarantee the freebies will end. Hopefully other jak inhibitors that are in fda testing stages will come to market soon and bring more reasonable pricing
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The freebies are there to get patients to try and hopeful get "hooked" on the drug and then Pfizer expects the insurance companies to step in once the freebies show a benefit to the patient. I am amazed with the fancy brochures Pfizer keeps sending in the mail since they know there's a high payout expected. But then again, many people are grateful to Pfizer for developing a drug that relieves their pain or gets them their hair back whatever the cost.
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Permalink Reply by Xeljanzmiracle on
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Yes many of us ARE GRATEFUL. Instead of wasting our time whining and complaining and making assumptions about what MIGHT happen in the future, we are getting our free Xeljanz and growing our hair back NOW. Why let another 6 months or year go by? The procrastinators are still bald.
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Permalink Reply by Jen on
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I don't think this is the place to shame people as "still bald." The people who are being cautious about this are not procrastinating. They just might have different priorities than you. Miracle, I see you on here a lot telling people they "may need" Xel. I am happy for you that you are getting the drug for free (for now), but I do worry about all of you on these drugs and I think you overreach quite a bit with your zealotry and your faith in Pfizer. There are SERIOUS risks to taking JAK inhibitors and NO ONE knows what will happen taking these long term. We won't know that for 10-20 years. Remember that in the USA drugs are innocent until proven guilty. I truly appreciate everyone on here sharing their experiences. It's definitely very brave to take JAK inhibitors and I understand the reasons some will do anything to get their hair back. However, I think it's fair to discuss all angles of these drugs on here including their development and the profit motives of the company. Pfizer is frankly acting like a typical drug dealer, giving the drug away until the user is hooked. And the prices they are charging individuals and insurance providers are CRIMINAL.
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I studied the trials in reality noone important side effect and now are really a lot of people using ...the placebo have had 6,5 % side effect xelianz 8,2 %...for the cost it's another thing and i think like you the price is criminal,, but fortunatly new drougs(and better) are coming...about Xelianzmiracle this is your personal thing so you and her must resolve, best regards.
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I posted this before on another thread, the current 7-year data seems about the same:
When you look at the safety profile on the drug the percentage of people who got cancers/malignancies during the RA trials, that was 1.9%. (The most common included 24 lung cancers, 19 breast cancers, 10 lymphomas, and 6 gastric carcinomas. Two more lymphomas turned up after the trials.)
http://www.xeljanzhcp.com/malignancies
When you look at serious infections during the trial (meaning hospitalization from infection) it's 6.5%
http://www.xeljanzhcp.com/serious-infections
So the math on that is 8.4 percent of people get cancer or are hospitalized with infection from exposure to this drug during the trial phase time period. I don't know how long the initial trials were, but probably not more than a year.
I think those are important side effects.
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So for you dott King that said the droug is sure and effective and said to some prople's forum the droug is sure is a lier, a fraud man?
You can not think that the breast and lung would be happened whit droug or not droug??? And simply visiting the people they meet them?
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Look at the data on the phase three studies. These are the first part of the safety profile graphs. I linked to above. All you have to look at is where the placebo is and where Xeljanz is to see the effect of the drug. And remember these were just short term studies. I would love to hear what Dr. King says to his patients about the safety profile. He seems like a very nice person. Maybe someone who has seen him personally can comment on his analysis of the risks.
In the meantime, here is a disturbing article about how stock analysts who invest in Pfizer see Xeljanz as unsafe: "The problem arose with some Wall Street analysts questioning Xeljanz's safety profile and wondering whether it was really a step up over Amgen's Enbrel and other plaque psoriasis medications already on pharmacy shelves. Though all approved medicines have possible side effects, Xeljanz's list of potential adverse effects is quite long. I suspect what really concerned Wall Street, and perhaps the FDA, was that Xeljanz can lead to an increased risk of developing skin cancer and lymphoma."
http://www.fool.com/investing/general/2015/12/22/pfizer-incs-bigges...
They can't get it approved for plaque psoriasis and they are looking for another market for it, they are happy to take Alopecia money in the meantime. They are selling a half billion dollars of it annually.
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Hi ADML, glad to hear your growth is continuing. Is it normal to lose a ine or two hairs when brushing or styling? I tend to panic if I even see one hair come out. I got my first hair trim and style yesterday. I can't even begin to describe the feeling, but I know you can relate.
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Congratulations Starshine! I have not cut or plucked one single hair since regrowth, lol! I'm letting my hair grow wild, like it did when I was little. Every hair is SO PRECIOUS to me, lol! I just gel my little "fro" down.
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Thanks Xmiracle, I agree every strand is precious, but it felt so good to go to a salon again like a normal person and it did need to be styled a little. Here is a photo. I still have not gotten much pigment back and it is very white, but my doctor does not want me to dye it yet so I am "rocking the white".
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