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 mcoops1990 on
-
Hi Frida or Kevin (or anyone else who has done the oral betamethasone steroid pulse),
My doctor just prescribed me oral betamethasone for steroid pulsing, in addition to the Xeljanz (been on Xeljanz for 3 months now). However, I just went to fill the prescription for the oral betamethasone at the pharmacy, and they told me that it doesn't exist in oral form (they said it only comes in a topical form). Just doing a quick Google search, it does seem to come in tablets and in a liquid form. What form did you take, and did you face any similar issues with getting the drug from pharmacies? My dermatologist's office is currently closed for the 3 day weekend, but I suppose after the weekend, I will call them to help clarify the situation with the pharmacy. Any insights/advice would be greatly appreciated.
Thanks!
-
-
Hi mscoops,
it defintely comes in oral. Have a shop around at some other pharmacies - it seems quite unpopular in the western world but commonly used in parts of Europe and Asia. It’s often given to women who for whatever reason need to give birth prematurely to develops the lungs of the baby. It’s not a med many doctors like - given its strength but pulsing (2 consecutive days in 7- not daily use) limits the damage it does to your system and seems to be less damaging then doing a daily prednisone dose which many doctors seem quite happy to prescribe.
Anyhow fingers crossed you find a pharmacy that is able to get you some. Dexamethasone is your next best bet!
-
-
Hi mscoops,
it defintely comes in oral. Have a shop around at some other pharmacies - it seems quite unpopular in the western world but commonly used in parts of Europe and Asia. It’s often given to women who for whatever reason need to give birth prematurely to develops the lungs of the baby. It’s not a med many doctors like - given its strength but pulsing (2 consecutive days in 7- not daily use) limits the damage it does to your system and seems to be less damaging then doing a daily prednisone dose which many doctors seem quite happy to prescribe.
Anyhow fingers crossed you find a pharmacy that is able to get you some. Dexamethasone is your next best bet!
-
-
Hi Radhwan,
you maybe able able to get xeljanz via your doctor however unless covered by insurance or a government scheme it’s usually prohibitively expensive. Some of us have found a generic that seems to work, and is reasonable easy to order from but laws are different to each country re importing meds so you can order but if it gets through is the question. Some countries allow import of personal meds with a script. I’m not sure where Switzerland is in terms of their import laws. For the most part if you cease use you may lose it all again, depending I believe on the inclination your body has to go into remission. Many AU sufferers will need to remain on it to keep hair. It seems to be more gentle on the system then many other meds but again it’s a choice of whether you feel comfortable taking meds long term.
im hoping google translate works ok on this message... I’m afraid I am not very good at just about every language but English so you are doing better then me!
-
-
Hi, can anyone tell me if you can have all vitamins at once ?
or is it best to spread it out throughout the day ?
Anyone who are taking vitamins along side xeljanz, could you tell me your regimen on when you take them ?
Thank you !
-
-
Hey Singh,
It really depends on which vitamins. Many are best taken with a meal for absorption (Multi, Biotin, D, etc), but others are more effective when taken first thing in the morning on an empty stomach (Resveratrol, Quercetin).
-
-
Hi Tc,
Thanks for the reply mate. It’s just the usual such as biotin, zinc etc but yeh I don’t want feel bloated or don’t want to feel am taking to much at once.
Am hoping Frida and others can tell me how they take there vitamins I.e what time of the day and what they take at them times aswell as do they take it with xeljanz or even before or after xeljanz ?
Maybe they wait a few hours ?
Any Info would be great, but I will certainly look at what vitamins should be takin with food. Thanks Tc.
Kind regards.
-
-
Hi Singh,
Mainly I just follow what they generally say on the bottle, however I am so forgetful that sometimes I take them at night after shower as that’s when I’m thinking about hair. If they say spwcficallly take with food and I’ve forgotten then I try to take them with some milk - so they aren’t hitting an empty tummy (or almond milk etc). The only advice I really try to give people with vitamins is for ensure you aren’t doubling up- some general hair vitamins for example have vitamin A in them- which is fine- but too much vitamin A and you can actually lose hair. So just double check the labels etc. TC has got me all interested in this cyp3a4 enzyme- I am reading up on inhibitors (makes meds that are metabolised stronger / last longee) or inducers (which limit the meds and hamper metabolism of certain meds). It’s quite interesting and talks about how we all process differently etc. A thought for those one multiple meds, have a google to check if it’s an inhibitor or inducer of this enzyme (vitamins too). It can have the reverse effect with some medicines- for example- some anti depressants induce the enzyme (not so good for absorption of toficitinib ) while other inhibit (good but must be carefully monitored - too much of a good thing etc). As I am not really very good on the science it is taking my head awhile to understand it. I did read too about some people having genetics which enhance or limit the enzymes ability to metabolise and it made me wonder about the 20% who don’t respond to toficitinib - if this is a factor or has absolutely nothing to do with it.
Anyhow- as I said - being not gifted in science, I am
a bit confused and definitely not the best person to be explaining these genetic and enzyme things, but I found it interesting.
oh yes and back to Singh- make sure you take any steriods (if you do an oral pulse) in the am. I find they make falling asleep difficult - so morning helps a little with this.
-
-
This site has pretty good pharmacokinetics on Xeljanz. There's a very section about halfway down the page on drug interactions that's searchable.
https://www.drugbank.ca/drugs/DB08895
Some really interesting info;
74% oral absorption (absolute bioavailability), with peak plasma concentrations (T max) achieved in 0.5-1 hour. Administration with fatty meals does not alter AUC but reduces Cmax by 32%.
Cmax is the maximum (or peak) serum concentration that a drug achieves in a specified compartment or test area of the body after the drug has been administrated and before the administration of a second dose.
70% metabolized in the liver by CYP3A4 (major) and CYP2C19 (minor). Metabolites produced are inactive. 30% renally eliminated as unchanged drug.
Metabolized in the liver by CYP3A4 and CYP2C19. Metabolites produced are inactive.
-
-
Hi everyone!
I’m in exactly 1 year xeliganz after 10 years no hair and hunestlly getting out of hope:(
I had prednisone pills, shots,vitamins, now I’m on 4 pills Beacon each day( not sure if 5 would be better) to be 20 mg same as xeliganz? Most people in here have full head grew after 1 year and mine so thin.
I attached a picture if any one in my situation or any idea would be helpful and much appreciated! Thanks
© 2024 Created by Alopecia World.
Powered by
