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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 Patrick on
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Hi everyone
I just would like to advise everyone considering taking Xeljanz to think again.
There have been reports of very serious side effects from taking this drug such as cancer and serious infections such as TB.
It hasn’t undergone yet thorough testing to ensure it is safe to use.
I don’t want to disheartened anyone but is getting back your hair really worth the risk to getting a serious infection and end up dying possibly from it?
If don’t believe me, google the drug to find out and take a look at the belgraviecentre.com website for info about this drug.
There is simply no cure as it stands so wouldn’t risk your health any further by taking drugs which although available just aren’t safe like this one and many others. Most all they do is make the immune system over suppressed which is not good at all in the long term. Once you stop also, hair will fall out again with these drugs so anything will be just temporary.
Thanks
Patrick
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Permalink Reply by Juan on
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Patrick, thanks for your feedback bro.
However I think you are overthinking it and also adding drama to this stuff.
This is simple: a drug that treats a condition.
All drugs have side effects.
As long as the side effects are tolerable and % of people drastically affected is minimum than is like ANY OTHER DRUG OUT THERE.
Many people have reported using it without any side effect, is a lot more the people without serious side effects than those who had any.
Is not true that it hasnt been tested, there are thousands of people using XELJANZ for RA on a regular basis, I dont know where you are getting your research from.
If based on the data available you still worried about the consequences of taking the drug then you should not get out of your house, or drive cars, or go in an airplane.
You are overreacting and sound very conservative.
If you are happy with how you look and prefer to wait 100 years for a cure than good for you
But dont com here to discourage and spread fear against those who dare to try a treatment and see how it goes. Life is only one and it goes by faster than you think.
No hard feelings
Bye
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Juan
I am not overreacting really. Please do some more research and as I said I didn’t want to cause any fear against people wanting to use it. It’s entirely up to them and you of course. As I’ve already said in my message I quote “ I don’t want to dishearten anyone” means that I don’t want to alarm anyone, not at all what you interpret it as so please don’t get me wrong. I’m just telling people that they should act with caution with any drug which is unlicensed because it is true these drugs can do some harm. Of course, entirely up to you if you want to take it. I have to say my doctor personally wouldn’t prescribe it for the matter I’ve described. There’s a reason why some drugs are licensed and not licensed did you not know?
I suppose I could say there are some people who liking taking risks and some who don’t.
hope it works out alright for you and yes no hard feelings
Patrick
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XELJANZ is FDA approved and also approved all over Europe by the EU...
isnt that a licensed drug?
I am a risk taker 100%, a YOLO kind of person, but taking Xeljanz isnt even in the top 20 of dangerous things Ive done in life. More dangerous, is sugar, alcohol, antibiotics, pollution, etc
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A few months before starting xeljanz I had a mild case of diviculitis.If that would have happened when I was taking xeljanz I probably would have blamed the drug since it is a supposed side effect.I was on xeljanz for over two years I never got another flair up or even a cold.Every single drug has a long list of side effects even look up the list for any non prescription drug.Xeljanz is used mainly for arthritis so it was probably tested on people who are 50 and older.
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Hi Patrick,
i know you mean well but for many of us on the meds the mental health issues associated with this condition are far more dangerous. Of course there is the most prominent being suicidal ideation but there also more subtle links between depression and long term inflammation- some new studies have now linked inflammation with many life ending conditions. I think we’ve probably all googled “toficitinib” and “cancer”. Most of the studies only indicate a minimal impact- given this is a new drug long term effects are perhaps the most worrying for us users. Personally if a cure comes up then I’m sure we’ll all jump ship- but until then we want our heads above water.
Truthfully- I have read many studies and the risk of things like cancer seem to be either on par with the general population or only very slightly higher. Even in cases of women who accidentally fall pregnant bad outcomes are only slightly higher then with general population (not suggesting anyone do this btw). Most of these studies also indicate that negative outcomes in test populations could be attributed to poor health from RA etc.
The main critical risks associated with these meds are related to impaired immunity- viruses etc. On that note it is important to be aware and cease use when badly effected - until you are able to fight off the virus/infection. Because of a reasonably short half life the meds leave your system quickly so stopping the meds is often quite effective in getting on top of infection and virus issues. So underlying illnesses that have been dormant like tuberculosis, pneumonia, hepatitis etc can become issues. Most doctors will do multiple tests to ensure your body can cope- I had chest X-rays, blood tests for everything under the sun, and a full physical before my doctor put me on it. Indeed I get blood tests monthly- and am examined by my gp frequently- so in many ways I feel safer then before - if I do happen to get something like cancer it will be picked up very early because I am being very very closely monitored.
i know you aren’t being arguementive or nasty in your comments- most of us are aware of the issues you raise- but we’ve assessed these risks and felt the benefits were worth it. Personally I think close monitoring is a must, self assessment and self awareness is also something I think is important, but, as I don’t drink, take antibiotics, smoke, do drugs, take other medications sparingly, am not overweight, exercise regularly, eat a decent diet, (no judgement to those who do though) this is the one risk I am taking and it is worth it. There are risks with medications that most people take quite regularly - paracetamol, antibiotics, nurofen- these are known broadly as medications which can be very dangerous- yet people pop them like tic tacs.
At the end of the day it is up to the individual and their doctor to determine if it is the right route. You and your doctor have made that decision not too, totally cool. The ones on here that are taking the medication have made their decision.
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hi nicol is what you think that if you take 15 mg of tofacinix do the same dosage as xeljanz because you said that the laboratory could not evaluate criterion I 2 box of tofacinix I am recommended so if you can inform me thank you
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Permalink Reply by AlopeciaAngel.com on
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" None so deaf as those who WILL not hear, none so blind as those that WILL not see" ~ Mathew Henry
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do not respond to them they are just jealous have adults are concious is to talk about our success as side effects among us have not all mention the side effects that have na and we are concient. and followed by doctors if any of us has low or severe side effects I would be the first to inform users
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I agree 100% percent Patrick with you. I am for everything holistic and natural. In doing so, my own journey I have hair regrowth... here are pictures in the last 6 months of where I was to where I am now... I serve the Alopecia community who wants to regain health and hair from the inside out. I have the results and so do my many clients. Here is link to my instagram with that picture https://www.instagram.com/p/BoY3NFeCzpm/?taken-by=alopecia_angel
or my facebook with same picture just in case you don't have Instagram: https://www.facebook.com/1679491755493297/photos/a.1740921259350346...
Also, I wrote a book on how to heal naturally and holistically. Its possible and no need for negative side effects. I understand those who are risk takers... I dive with sharks, jump out of planes and do other adventurous things. However, from research and from medical knowledge, I know alopecia healing is a multi step pronged process. Not one pill or one anything will work, its a collaborative and joint process. I am happy to help anyone interested. www.alopeciaangel.com
Actually, I was able to upload, March 2018 on left and September 2018 on right side....
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