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Xeljanz
Hi - I have Alopecia Universalis and started this medication on August 22, 2014 (7 weeks ago). I take the same dose Dr. King gave Kyle Rhodes - 5mg 2X per day. I do not have 1 hair yet? I saw my Doctor yesterday and after I get my blood tests back he will probably increase the dose. Is anyone else out there taking Xeljanz? Can we compare notes / side effects, etc.?
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AW: Other discussions on Tofacitinib
Replies to This Discussion
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Permalink Reply by Rose Marie' on
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Hi Rose
Alopeciadestroyedmylife (Owen) is in a study at the moment. Contact him as I believe his info may be helpful.
Rosy
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I am sorry you are not seeing any results yet. I would keep at the current dosage for a couple more months (assuming your blood work looks good/ no side effects) and see where things stand at that point. Unfortunately autoimmune diseases are tough to fight sometimes and AU is the hardest of the alopecia bunch. I don't expect any new drug to come out and cure 100% of those inflicted. At best, I feel these new treatments might tackle 75-80% of those who have AU.
A couple things about Kyle Rhodes: At his baseline, he did have a fair amount of vellus hair to start with. He also did not have much in the way of body hair. I have read where he naturally has little arm and leg hair. With this said, I am speculating that he did not have as much of the disease to go after compared to many of us (he had less pathogenic mechanisms to break).
I am currently taking Xeljanz and have seen growth...all of it is vellus hair so far (as expected). I have only noticed hair on my face (I am an AU male) and scalp. If this medication does work, I do not expect it to work on me as fast as it did with Kyle Rhodes. I am willing to continue the medication until I see a prolonged stop in improvement. Right now these new treatments are about the best thing out there for AU...if you are comfortable with the risks/ cost, you can't blame yourself for at least trying.
I currently do not notice any side effects and my blood work has come back normal. I may have had a slight increase in appetite the first couple of weeks, but I am really not sure if that was related to the meds.
Best of luck. May we all find a solution...one way or another.
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Thanks for taking the time to write. I just noticed a couple of those thin, white hairs on my face this week. I wrote a few more blogs but notice they never posted.
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Hi
I thought the following information may be helpful.
Rosy
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.
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Hi - I took the xeljanz for 4 months aprox. August 22 - Dec 20th. I finally got quite a bit of vellus hair on top of head, vellus on face (yuck) and vellus on bottom lashes. 4 brown terminal hairs (2on the lashes, ! on head and 1 above lip.
Then bad luck....my Insurance refused to dispense anymore. Apparently, they don't pay for "off label" or medication that promotes hair growth. Apparently, this slipped thru the cracks at first and then a pharmacist spotted the diagnosis of Alopecia from my Doctor. I submitted a strong appeal with letters from my Doctor, myself, husband, accuppunturist, etc. and was denied again. and then depression set in ........
The hair that was on top of my head is gone already>
My blood work was very good. My blood pressure and pulse were lowered during Xeljanz use, which I needed anyway and my cholestorol was increased slightly, no big deal.
Sorry if it took me a while to respond - my blackberry phone doesn't navigate well and I don't break my laptop out often but I'm going to make more of an effort.
How are things going for you ?
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Permalink Reply by ErikaJane23 on
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How did you get it in the first place? My understanding is that you have to have a diagnosis of rheumatoid arthritis. Did your doctor give it to you as an Rx for alopecia specifically????
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This is my first post. I just started Xeljanz today. My insurance didn't cover me, but Pfizer did. Nobody is aware of the Xeljanz copay program and I wish everyone was! I got 3 months of Xeljanz for $0.
Simply go on Xeljanz website and apply for a copay card. It processes in a few minutes and you will instantly have a downloadable PDF with a unique copay card if approved (they also send you it in the mail). Just like that. It covers up to $8000 a year. The only qualification was to have private insurance. I don't know why either. And even if you don't, you can still work things out with them. I called my pharmacy after learning my insurance didn't cover Xeljanz, I told them I have a copay card and read them the information over the phone and BOOM just like that 3 bottles (60 pills ea) of Xeljanz shipped to my door. $0.
I only have about 25% of my scalp hair missing currently and some patchy body hair that I luckily pull off well since my body hair isn't too thick. My girlfriend loves the smooth skin on my arms and legs anyways! That's something I'm not sure if I would like to give up haha! Anyways, I've had alopecia for 7 years now. I had lost up to 70% of my scalp hair 4 years ago and almost lost my eyebrows once as well. I did a home remedy which requires constant irritation and regrew over 95% of my scalp. Some spots were missed during treatment and has since allowed it to return (4 years later and it has been a very gradual 25% hair loss so I'm not complaining.) Anyways, so I'm hoping 3 months will fair well with my somewhat moderate form of alopecia. If 3 months isn't enough time, my dermatologist can get me a month free sample from a rheumatologist friend of his. He really goes above and beyond for me. I really don't think I'll be needing more than 4 months for my current situation.
Another thing, I've had great experience with squaric acid. It has regrown spots in a matter of 4-6 weeks as long as I catch them relatively early (1.5inch diameter or less). My current strategy is to regrow my entire scalp with Xeljanz, then once it has all regrown and remained stable, I will discontinue Xeljanz and I will have squaric acid on hand to maintain and catch the spots super early if they return. I suppose using an irritation technique like squaric-acid while simultaneously taking Xeljanz would definitely yield some AMAZING results. Think about it. Irritating bald areas distracts the immune system from attacking follicles and refocuses the immune activity to the skin being irritated, while also inhibiting those exact metabolic pathways with Xeljanz, it's like completely destroying any hope for white blood cells. My theory is that both would work in blocking immune function at the follicle, however, because Xeljanz has a 3 hour half life, it won't be working its magic 24 hours around the clock. So, if you pair an irritation technique like squaric-acid to the regimen, my belief is that the irritation would absolutely ensure constant relief of white blood cells from attacking the follicles, WHILE the Xeljanz does the same exact thing, but will allow the follicle to sprout at a rate unaffected by the drugs off-time inflammation. I have my squaric acid prescription coming in now. I will continue to treat one spot with it and I will leave another spot as a control. Hope all is well with you guys.
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Permalink Reply by aaron on
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I just signed up for a copay card. Now I have a quick question. Did you see a dermatologist to get Xeljanz prescribed? I'm interested in conducting a similar trial and posting my results to this forum.
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Fortunately for me, my dermatologist went ahead and prescribed it to me (off-label use). Now there are a few things that should be noted here.
The pharmacy will sometimes contact the doctor who prescribed it, asking why specifically you need this medication. Since it is a rheumatoid arthritis medication, they will likely ask for proof of this. A dermatologist can't do this, obviously. When my dermatologist prescribed it to me, he did not specify what it was being prescribed for (alopecia), because he knew this would jeopardize the chances of such a drug being prescribed for a condition that is considered cosmetic.
So this is where things get tricky because if the pharmacy DOES ask for approval, you may need to find a specific rheumatologist who is willing to prescribe it to you. If they don't contact your dermatologist asking for pre-approval, then you are in the clear.
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