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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 Ricky_1008 on
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Hello Everyone , I know sometimes it’s very hard for people to get in touch using this website. So I have decided to form a group on what’s app called Alopecia Warriors! Anyone who wants to join please feel free to contact me on +255742208040 and I will add you. This will make communication very easy for us . The more the merrier . Thank you
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Ok - so I haven’t responded re the Coronavirus as I am not a medical expert and my thoughts are not substitute for medical advice from a doctor. I believe, like maestros has kindly responded, will not impact many of us as significantly as other populations. You need to be aware of your body- have you had more issues with infection, flus and colds on xeljanz? Some seem to cope better systematically then others. If you have noticed your body is more prone to infection it may be prudent to seek out advice on what to do.
The other recommendation I can make based on my own experience is to develop a plan and stick to it. My plan is that if I get Coronavirus I will keep close tabs on my temperature - if it goes over a pre- decided number I will stop use until my fever drops. I am very lucky to have had great bloods and health on this med- so my individual plan is different to someone who has struggled health wise on this med. Developing a plan is also important as it will give you a sense of control, and help you manage anxiety as this issue continues to dominant our everyday thinking.
Some other things I am doing mainly to give me peace of mind- i am carrying two weeks supply on my person, if I forced to isolate or am admitted to hospital I want to have enough meds to go the distance. Ensure you carry the info pamphlet from the medication with you - many doctors have no clue about Jak inhibitors and with the health system under strain they may not take the time to google it for info. If you are prone to infection see if you can ask your doctor for a script of antibiotics to target secondary infections that may arise, and also look back at your lung X-ray that many got prior to commencing xeljanz- if you have strong lungs without congestion then this will help calm your anxieties. Consider how you fit in terms of the “at risk” population. Are you over 50, have you had issues with pneumonia, do you have cardiovascular issues. If the answer is yes consider reducing dose.
Xeljanz is a sophisticated Jak inhibitor- it’s not like many of the other immune suppressant meds out there, it does not blanket bomb your immune system rather blocks a specific pathway - this means it is probably (I say probably as this new virus has a lot of unknowns still) less dangerous then the likes of methotrexate and cyclosporine.
I think the reason most countries are freaking out about this particular virus is that it passes between people quickly- and most medical systems are going to struggle to deal with so many sick (even if the sick aren’t dramatically sick) at once. When the health system is so bogged by viral illness people who have serious and life threatening issues (not covid 19) will not get the same focus and care as the system is so stretched. They are trying to slow the spread so hospitals, doctors and clinics can cope with the increased load without compromising critically ill patients.
By saying this I don’t mean to play down covid 19- I am frightened- not for my own health or my husband and children who are not in the vulnerable category (I’ve never felt stronger) but for my parents- my mum has chronic illness, bronchitis yearly which causes her blood oxygen to get very very low, she is disabled and immobile and she is in the most at risk category, my dad, who is her care giver since retiring, also is not in prime health . If she gets this it will be very dangerous for them both. I have a friend at work who has serious lung complications - I worry for her health.
If you do have to discontinue the use of xeljanz and you do suffer a set back - we are here for you. On this thread we are a community - we will talk you through it, and you can always resume the meds once this passes. You have a treatment that works, so don’t feel this is the same as when you lost all your hair in the beginning - it will be temporary and the meds, once you restart, will work again.
If you are criticised by friends and family for continuing to use Jak inhibitors you can truthfully say that not having hair can be detrimental in viral outbreaks- eye lashes, eyebrows, scalp hair and facial hair can inhibit bacteria and viral strains from entering eyes, noses and mouths- it is a key reason for humans having hair in these places. If you suffer AU, not having these protective hairs can mean you are more exposed.
The usual cautions - hand washing, maintaining distance from others etc apply. Try not to worry, most of us on here are reasonably robust outside of our alopecia (indeed that’s part of the problem - our immune system is too strong). The short half metabolic life of xeljanz means that once you stop taking the med it exits reasonably quickly - so you can stop and within a few days the meds are out of your system - this is good if you do get sick as your body can quickly return to its normal “not Jak inhibited” state.
Try to remain calm, this is scary for many of us - it’s hard to get clear and concise answers- but guys - we have been there before- when we got alopecia typically we couldn’t get clear medical guidance, we had to own our condition and seek out effective treatments. We have experience in managing in situations most couldn’t even begin to imagine- we know how to get treatment, get answers and advocate for our choices - we are ahead of the game. Be strong- we will get through this and we have this forum to offer ideas and help anyone who has a set back get back on their feet (with hair on their head lol!).
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I agree with Frida. This a unique situation.
Taking the public health advice seriously (washing hands, taking social distance, wfh if possible) will lower the infection rate and help lower the stress to the health system of every country. The health systems are not prepared for it, therefore I believe this is of essence.
Personally, I am continuing taking Xeljanz since over the last 3 years I have had much less "colds" or flus, than the last years before Xeljanz, and similar to Frida, I will be making a decision when I feel I need to help my body recover.
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Hi Frida, I believe I speak for all sufferers of this disease when I thank you sincerely for the time , effort , care and emotion in that fantastic reply. In these times we are at tender hooks. I’m a fully recovered AU sufferer thanks to beacon pharmacy and their service and supply of generic Xeljanz. Initially I wrestled with the should / shouldn’t I proceed on this treatment journey considering the potential side effects. Would I be risking my physical health to regain my mental strength and confidence so utterly essential to having a fulfilled meaningful life not only for me but also for my family. I’ve transformed from a broken down unconfident man to my former self and thrive in both personal and professional life for the last 6 months since recovery. It’s people on this forum that emboldened my decision to embark on this treatment that I have to thank. Special thanks to Nicole who started the India contact that made it possible financially and to the other forum member Kevin who had the pills from beacon tested and verified.
Best of luck to us all and stay safe in this trying time X
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"If you are criticised by friends and family for continuing to use Jak inhibitors you can truthfully say that not having hair can be detrimental in viral outbreaks- eye lashes, eyebrows, scalp hair and facial hair can inhibit bacteria and viral strains from entering eyes, noses and mouths- it is a key reason for humans having hair in these places. If you suffer AU, not having these protective hairs can mean you are more exposed."
THANK YOU, FRIDA!!! That paragraph in your post did more for the cause of alopecia areata (especially AU) then you will probably ever know. Perhaps now those idiots who tell us, "It's only hair" will think twice about that. Hair is not just cosmetic, as the insurance companies would like to believe so they can deny coverage and increase their profits. Hair serves another function as well. It is a protective mechanism that shields us from germs, bacteria, virus, debris, etc. Having no nose hairs or ear hairs provides easy access for all these detrimental particulates. Sad that it has to take a deadly virus to teach them that. Hopefully, this will force them to provide us with treatment.
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They say 80% of people are going to get the coronovirus because of the way it spreads. It's impossible to avoid.
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https://chat.whatsapp.com/EPeb5RKxg39AL5mFg5dfK8
anyone who wants to join the group please feel free too .
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I am so upset that I am sobbing as I write this. I have been on Xeljanz for 5 years. I have 100% regrowth of my lashes and brows and 100% coverage on my scalp though it is thin and fine. I was AU for 5 years before I started using Xeljanz. About 18 months ago my insurance stopped covering the medicine until my doctor submitted preauthorization, letters, photos, etc. During the time we were appealing, I lost all my hair again. It was so traumatic. After winning the appeal, I have regained my hair, lashes and brows. We were told that that preauthorization would last until October of this year. I thought I would have time to order from Beacon or find some other source before the problem arose again, but my insurance denied again last month out of the blue. This time all our appeals have been denied. I have been without meds for about a month now. My head itches and my cuticles have become dry and started to peel. I have contacted Beacon and am waiting for an invoice, but an order looks to be at least 3 weeks out. I am trying to get my doctor to start steroid pulsing. Does anyone have any suggestions for holding on the hair I have? This is psychological torture. I'm sorry for being so dramatic. I'm just destroyed.
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I am so sorry, Merry. It is absolutely appalling that insurance companies insist on giving alopecia areata the short end of the stick! WE HAVE A REAL DISEASE!! When you have AU like we both do, you are literally stripped of a part of your protective body part. Again, nose hairs and ear hairs help to filter out germs, bacteria, etc. Brows and eyelashes protect the eyes from injury, sweat, and debris. I really think the CDC needs to take all this into account. While we appear to have very strong immune systems (too strong), we could be carriers to others who don't. Just a thought, given the current crisis we are facing with COVID-19.
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i'm really sorry contacted beacon ordered the 11mg boxes contact beacon the only delivery is dhl is i read that your package is blocked by customs because the ems carrier is closed until march 31 verified if dhl delivers in your country ordered small quantity for customs. with the coronavirus it's very difficult, I don't know how the deliveries are going to your country. cortisone can reduce inflammation but as a coronavirus I don't know if your doctor will want to put you on anti inflammatory medication temporarily. it's the wrong time with this virus. if a user who has a large stock of tofacinix close to expensive you may be able to help you out 4 boxes this would allow you to hold 2 months by taking 2 tablets per month while the order arrives if the customs does not block it contacted beacon and ordered 4 boxes of 11mg with the dhl transporter.
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