Alopecia World
www.alopeciaworld.com
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.
-----------------------------
AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
-
Permalink Reply by Rose Marie' on
-
Hi Nick
Please accept my apologies re the cost...it was what was reported from the conference but maybe it was distorted and I may have taken GBP instead of USD...which makes sense with your information...so, $33,000 USD a year...is that right??? (Still pretty prohibitive for many)
It is very difficult not to find spin and opinion mixed up with this information. I have also read that the original research was done on 12 people... I know the findings were published in a very prominent Medical Journal...have you got information around the first study and how many people were studied..what was the outcome for all etc....If you have more information please pass it on. I would love to have all the information with regards to costs, risks, etc.
Like everyone here I wish there was a cure and hope something will be forthcoming in the near future.
Rosy
Rosy
-
-
Hi Rosy. When news hit about Xeljanz the news media made it a joke making no distinction between male pattern baldness and Alopecia. As we all know there is a huge distinction! I would love to have male pattern baldness! Anyway, I get a little sensitive when miss information is spread. So, yes 30 K still sucks and it is not affordable for most. I applaud ADML and CWS for taking all of us on their journey. I could not be a bigger supporter of both. So, all I know is we all finally have hope. At least Dr. Christiano and her collegues have narrowed down how to stop our bodies from attacking our hair. Now, what vehicle is best? Xeljanz and Jakafi seem to target the culprit. Problem is, Xeljanz( pfizer) and Jakafi (incyte) can't promote the new findings because their respective drugs are not approved for Alopecia application (FDA rule). I also understand Dr. Christiano at Columbia has the patent for JAK inhibitor use in Alopecia. How motivated is Pfizer and Incyte to combat Alopecia when they can't hold the patent? So, the ball is kind of in her court as to which drug company she partners with and when. Her colleague, Dr. Clynes just left Columbia Univ. and went to work at Brisol Meyers Squibb Pharmaceutical...could there be a connection...stay tuned. Regardless, the new label would have to also go through trials until approved for use in Alopecia. My point, unless you can buy Xeljanz or Jakafi (10k a month, but fewer side effects than Xeljanz) on your own, insurance treatment is years away...in my opinion. Having said that, you must crawl before you walk, so begins our journey.
-
-
Hi
I totally understand the sensitivity around this....believe me I would so like a cure for this and many other auto immune conditions that a ravaging people's lives. I also applaud people like Owen (ADML) who are willing to be test cases....in saying that I know without doubt I would not want my daughter to be the test case (She is a medicinal chemist and actually gets this all very well).
I do agree that this may and probably is a step in the right direction....and like you I find it frustrating that information is sometimes a little fuzzy around the edges.
Rosy
-
-
It's 2000 for 30 5 milligrams and its increasing. 2 grand isent even the exsact number I think it's like 2100 or 30$ under 2100 last time I got my script.
-
Permalink Reply by Apple on
-
That’s what insurance companies say it’s not life threatening. It is to me I’d rather die than live in sadness and desolate. That’s how I feel, how dare people say it’s not a big deal.. it is you look a normal, like a sick dying person.. only wait your not dying that’s worse a long life of suffering you just don’t get it.. I just want to be free to be me.. not a shadow of who I am. It’s devastating having alopecia the only people who truly know are the people who have it.
-
-
I did recently speak personally with Dr. King who did verify that the cost was 2,800 a month and at the present time there were more questions than answers. It is a little disheartening to hear that it could be years before this drug or a form of it can be made available to everyone. Still, it is a step in the right direction and I totally support ADML and CWS.
-
-
Hi I read on here about the study and i would like to try it out how do I get in contact I sent letter in the mail and never herd back please email me at katherine.shepard@gmail.com
-
Permalink Reply by AlopeciaDestroyedMyLife on
-
Give Dr King some time he is a very buzy man.
-
-
Hi
I thought the following information may be helpful.
Tofacitinib (Xeljanz) for Treating Alopecia: Top 5 Points for
Canadians
By Dr. Jeff Donovan
Craiglow BG, King BA. Killing Two Birds with One Stone: Oral Tofacitinib Reverses
Alopecia Universalis in a Patient with Plaque Psoriasis. Journal of Investigative
Dermatology 2014 Jun 18.
A wave of excitement arose last week with the publication of a
scientific article in the Journal of the Investigative Dermatology. A 25
year old man with both psoriasis and alopecia universals was treated
with the arthritis drug tofacitinib (also called Xeljanz). Within 8 months
of treatment the man had grown hair.
This is a time to be excited because every new piece of information
pushes us that much closer to understanding the best treatment for
alopecia areata. However, as a physician and medical advisor to
CaNAAF, I also want to ensure that my patients and the general public
receive accurate information.
The following are the top 5 points everyone should know about this
new study and the drug.
Point 1. Tofacitinib (also called “Xeljanz”) is a relatively new drug
approved for rheumatoid arthritis. It's FDA approved for patients
with moderate to severe rheumatoid arthritis. The drug works by
blocking an enzyme called the Janus kinase (type 1/3). We have not
used drugs before for treating alopecia areata that specifically blocked
this ‘molecular pathway’ inside cells so this is exciting!
Point 2. Tofacitinib is an immunosuppressant medication. We
already use many different types of immunosuppressant medications
for the treatment of alopecia areata. Four examples include oral
prednisone, methotrexate, cyclosporine and sulfasalazine. Do these four
drugs work to promote hair growth in some patients with alopecia
areata, alopecia totalis and alopecia universalis? Yes! Is tofacitinib
better? We don’t know that answer.It’s important for everyone to remember that the drug tofacitinib is
formally approved for patients with arthritis who don’t get better with
methotrexate. Tofacitinib is not formally approved for alopecia areata.
Should tofacitinib be considered only after someone with alopecia has
tried other treatments? At the present time, the answer is yes. Given
that tofacitinib is not approved for alopecia areata and results of only
one patient have been made public, other treatments should most
definitely be considered first.
Point 3. Tofacitinib is one of many medications that may have
helped the man in the study. It’s important to be aware that the 25
year old man in the study was previously treated only with topical
steroids before being given tofacitinib. He didn’t receive any other
treatment. We don’t know whether other alopecia treatments such as
topical diphencyprone, topical anthralin, methotrexate, cyclosporine
and sulfasalazine would have promoted similar growth. I truly suspect
some of these treatments would have also given him hair growth.
Point 4. Tofacitinib is a treatment, not a cure. It’s important for
everyone to keep in mind that tofacitinib is a potential treatment for
alopecia but not a cure. In order for this man to keep his hair, he will
need to remain on the medication. We don’t know if he will lose his
hair in the months ahead even if he stays on the medication. I suspect
that if he stops the medication he will lose his hair.
Point 5. Tofacitinib needs to be respected. Tofacitinib has potential
side effects and should only be prescribed by a physician who is very
knowledgeable about the drug and should only be used by patients who
are very knowledgeable about the potential side effects. As an
immunosuppressant, the drug can increase the risk of infection. In fact,
serious infections occur in approximately 2 % of patients. Long term
risk for cancer also needs to be considered. The drug can reduce heart
rate by approximately 5 beats per minutes and sometimes can’t be used
in patients with heart problems. Frequent blood monitoring is needed
while on the drug as the drug can irritate the liver, sometimes lower
blood counts and sometimes raise cholesterol levels.Final Comments
New pieces of information push us that much closer to understanding
the cause and optimal treatment for alopecia areata. The drug
tofacitinib may be helpful for patients with alopecia areata, alopecia
totalis and alopecia universalis, but more studies are needed. All
physicians prescribing the drug and all patients who wish to consider
the drug need to be aware of the short term and long term risks.
-
-
Congratulations on your copy and paste from Your Google search.
-
-
Hi
This was from CaNaaf, an organisation that is responsible and caring for those with alopecia. You possibly didn't read the beginning of the post????
Rosy
-
-
This is my xeljanz update after one month on the recommended dosage of 2 pills a day. My first month was just one pill a day. Things continue to improve. Below is a list of changes:
I now have significant eyebrow vellus hair. If these were terminal, I would say 85% of my eyebrows are back.
My mustache has gone from 10% to 65% vellus hair; half of which is thick white vellus hair.
I have a few very small patches of vellus hair coming in between my lower lip and chin.
I notice vellus hair on my ears. There is one hair that grows behind the inner “folds” of my left ear that is difficult to see but I could feel. It felt thick so I plucked it (I use to always pluck this hair). It was half clear and half black (my first terminal hair growth!). A small but encouraging victory!
I now have 5 or 6 nose hairs.
Vellus eyelashes are on both eyes and on bottom and top lids. They are still thin and small but more and more are growing. There are significant amount of them on each eyelid (guessing I have 70% of my eyelashes in this vellus stage).
Scalp vellus: I continue to see new growth here with some areas growing a little faster than others. Nothing crazy but definitely growth.
I see significant vellus hair growth on my cheek bone areas…nothing really in the beard area.
I don’t notice any growth on the rest of my body yet.
I continue to have no side effects and my latest blood work was normal.
I think there is going to be another month or two of improved vellus growth with little to no change into terminal hair. Hopefully after that, things will get more interesting and promising.
© 2024 Created by Alopecia World.
Powered by
