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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 Frida Rupert on
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Super exciting! Such a fast response. You'll be hairy again in no time.
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Permalink Reply by Patricia on
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Hello Frida
can you tell me how I can get Xiljanz from overseas please?
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Hi Pat,
I don't know your country of origin so I am limited in my responses. First things first- try and find out the legal limitations in your country for legal importation of medication for personal use. I personally strongly advise you try and do this legally. Alopecia is stressful enough without worrying about whether you are gonna have legal problems or access issues. That said a lot of countries are quite liberal about importing medication which is not addictive, is not a pain killer and can not be used recreationally. I would also advise that you find a local doctor who is willing to write you a script and monitor your bloods. You need to be aware of your bodies ability to cope with the medication. Most people seem to choose Turkey as their source country as it doesn't require a script. To get through customs during reentry I think you'll need a script from your home country.
my personal situation is helped enormously by the fact I have family and friends internationally who help me by sending me my medication- unfortunately I can't share these contacts as they are helping me because of my relationship to them. I strictly adhere to the personal importation scheme of my country of origin and also the country from which I purchase the medication. I am limited to importing 3 months at a time and include documents of the law re personal importation and my prescription with each package. I am monitored by my GP and my specialist and their details are included in each package so customs can verify that I am doing everything by the book. If you are in the Us I would attempt to go through xelsource if you qualify or go through insurance (if you haven't tried).
Turkey is an option many people seem to go through. I don't go through Turkey because there are other countries where my contacts are able to help me. In the future I may have to travel to get my meds and will do this if necessary.If you don't have a script Turkey might be your only option but then getting it back into your country of origin is difficult.
Ive done a lot of research on this particular medication and I advise everyone to research research research. Research international patent laws, research court cases around this particular active ingredient so you are informed, at the very least you may find out options for when the patent expires, research your rights in terms of what and how much you can import. Find all the information you can, and insure that where ever possible you are doing things lawfully (I don't judge those who go outside of these stipulations as I understand the desperation of this Illness but doing everything legally minimises stress on you which is a good thing when you suffer from a condition that "may" be made worse by stress). Seek out trials in your area If you can. Find a doctor who will be your advocate- even if they are a GP- be honest about your need for this medication (a note here- for those with AA of less then half your scalp I would advise other treatments first as would almost all doctors and specialists - AA of less then 50% of the scalp has a really good remission rate- xeljanz and steroids are really for those of us with more then 50% hair loss who unfortunately have a much reduced remission rate without treatment.
I am not an expert by any means in xeljanz or how to access it ect but I have researched this a lot, partly cause I am someone who does research (albeit in different areas) for my profession so it's kind of second nature, and also because I have learned that when it comes to medical matters we are our own best resource. If all else fails look into other medical treatments that might be more affordable and accessible. I personally tried methotrexate and cyclosporine and prednisone before arriving at xeljanz. Google alopecia and immune suppressants and there are some encouraging results from other treatment modalities even with extensive alopecia. Remember the patent expires 2020, hopefully accessibility across the board will become easier but there are other things to try in the meantime if you can't access xeljanz. I know this is tough- I am really sorry I can't help more but take heart that it can only get easier for alopecians to get treatments that work going forward.
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Hi Frida. I just started cyclosporine this week for AU that has remissed spontaneously into AT. I have sparse eyebrows and lashes but my scalp has grown back almost completely however shedding on top now. I would love to know your experience with the drug and did you have any results.
Thank you
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Hi DJP,
to be honest I don't think I gave cyclosporine a long enough time to work as I was using it when I was under my dermatologist and then at my first appt with my immunologist he wanted me off cyclosporine and helped me get on xeljanz as he felt the cyclosporine was making me lose too much weight and giving me shakes( not a problem with xeljanz for me- lol and I think maybe the shakes were anxiety related- my immunologist knew what to say to give me hope and lessen my anxiety about the alopecia). That said some of the studies have some great results but I think it's like xeljanz- you need to give it a good bit of time to let it work. Have you thought or discussed steriod pulsing? That's got some amazing results in some studies but the side effects are kind of off putting. Anyhow let us know how you go on the cyclosporine.
Ps congrats on your natural partial remission- I think that in itself is a great sign you will get results on cyclosporine- your body is wanting to go into remission.
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Frida did you go to an immunologist for Alopecia or did have other reasons? Thanks!
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It was discovered when I was diagnosed for alopecia that I had hashimotos so I was sent to an endo and derm. Both seemed to be totally inept outside their specific specialisation so my GP sent me to an immunologist (I encouraged her to do so as I kind of saw this as an immune disorder as opposed to a skin issue). When I went to my immunologist he was such a great doctor- eager to find out about my circumstance and willing to actually do some research into successful treatments for me. Also he was quite knowledgeable across disciplines and was willing to monitor me and be my primary treater of this disorder. In other words - he treated me respectfully and listened to what I wanted and how I felt and worked to those two factors. I think it's an individual thing, some derms are great but my immunologist is just more informed and generally a doctor who wants to help his patients. I think the main thing is to find a knowledgeable doctor whose first priority is listening to the patient and seeking solutions regardless of specialisation but to me my immunologist just had a much obetter grasp of the cause and experience with immune suppressants. I am his first xeljanz patient but he has done research on my behalf and reads all journal articles and studies I bring him. My advice is if you don't have a good experience with a derm try to see an immunologist or a rheumatologist because they have so much experience using immune suppressants and have a better understanding (in my experience) of the immune system.
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Hello Frida I am French and I am looking for xeljanz Tuesday 3 box in turkey and I really afraid that the customs confiscate me. do you know people who have had problems at customs
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Hi Kevin,
i understand it must be scary. I don't really have any knowledge of the legal restrictions in France so I can't give you specific information and I don't speak French so can't do much research for you. Do you have an ability to see a doctor in turkey to write you a letter re the meds being for your condition. If so that might be the best way. There are lots of people who seem to have had success with buying it in turkey and bringing it in without problems though I think there is a chance they will stop you, worse case I think is they'd take it off you as clearly it's for personal use and it's not a recreational drug and doubt they would charge you for bringing such a small amount. Personally if I were you (and I am no way recommending this as I don't know how these things work in France, so you kind of have to weigh up risks) I would post the medication back to your home address. i hope someone on the forum who has done the Turkey route will give you some tips, unfortunately I have no experience with the Turkey route. Have a look via google at Frances rules on med importation for personal use. You may be legally allowed to bring it in... sorry I can't help more specifically. Let us know how you go.
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xeljanz is on sale in France and Europe but I have taken a look in all the US or European countries it takes a prescription as proof but the people had no problem. you are not allowed to bring drugs to your country without prescription from your doctor. I wanted to take 12 boxes but with the risks I do not prefer. I'll let you know on Tuesday. I'm really scared of not getting xeljanz this is my last hope
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Hi Kevin!
someone post xeljanz from Turkey to Canada and custom was not easy, DHL called me to go there and officer said you are citizen of Canada and not allowed to get medicine from aboard. But he was nice and gave it to me that time and he mentioned if next time you will not get it at all!
So hopefully you'll get this time but it's risky!
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Shad,
Is that because you didn't have a script. I looked up on google and it seems you can import up to 90 days worth into Canada at a time but their are strict rules about how it must be packaged etc and I think you do need a valid script.
https://www.canada.ca/en/health-canada/services/drugs-health-produc...
Check out this page and see if you don't meet the terms. It seems as long as you have a script and meet the package requirements it could be within your rights to import 90 days worth....
Don't take my word for though- maybe you can call and ask someone in a suitable area to help explain the policy. I think that you could probably find a doctor who would be willing to write you a script if you are clearly suffering from At or Au...
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