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Dr. King comment on Xeljanz trial to date
I was lucky to get a response from Dr. King regarding an inquiry as to the results of the initial trial for Xeljanz. I had spoken with him at the onset of the trials which is the only reason I think he responded as he is not taking any more calls or e-mails regarding this subject. I asked him if he thought the results so far warranted trying the drug as the cost is so high. His response was as follows:
"The results of the initial group of patients will not be tallied until May. I can tell you that folks are growing hair, not everybody, but many. You may want to wait until the results of my trial and the Stanford study (like mine) are known later this year. That will give your dermatologist guidelines and give you a sense of your likelihood of success so that you can better decide if it is worth the substantial cost."
I wanted to share this response as I believe the more information we have, the better. This seems to be the only real hope for many of us with this never-ending condition. The fact that there are a few people who have not responded is a little disappointing, but without knowing their circumstances, it is hard to make any conclusions. Any feedback, especially from those who are participating in the trial or currently taking the drug would be helpful.
Replies to This Discussion
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Permalink Reply by DJ88 on
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Well, he didn't say much but, at least we know the trial will be done later this year. Now if it were to be FDA approved that would be great
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Permalink Reply by AlopeciaDestroyedMyLife on
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For the non responders I really think it is a matter of increasing dosage and giving them much more time about 8 months minimum.
If we look at things this way , all people are different and if the hair follicles are at stage 0 and someone is at stage 8 (even if they look like they have no hair) they would grow hair a lot faster but the 0's will need more time to gain momentum and get up to the same level.
I'm in my 5th month now and only recently have I started growing some dark hair.
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Permalink Reply by Starshine on
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Thanks for your input ADML. I was thinking the same thing. Hope your growth continues as it gives us all hope.
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Permalink Reply by Arun B on
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That's great Kimber! Glad it's working for ya.
Are you on 5 or 10 mgs per day?
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And what dosage, times per day for xeljanz? Sorry for all the questions, but your regrowth is very exciting. I am desperately trying to start Xeljanz. My derm has prescribed it, but paying for it is another matter.
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Permalink Reply by kimberj on
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No problem. I don't mind the questions at all. We have all been there, unfortunately.
I need to correct my earlier reply. I take 2- 200 mg of Plaquenil at bedtime along with 1- 5mg tablet of Xeljanz, also at bedtime, everyday. I usually take 2- 5mg tablets of Xeljanz but due to insurance denial, I have cut myself back to 1 tablet to make them last longer. I have been taking the lower dose for about 3 weeks now. I haven't noticed any changes.
I am also very excited about the regrowth!!! I am also worried that I could lose it all again if and when I stop the Xeljanz. Hopefully the Plaquenil will be enough to keep the "switch" turned off.
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I was wondering, what form of alopecia did you have before using Xenjalz?
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