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Xeljanz: When should I worry that it won't work for me?
I started using Xeljanz on March 12. I have been lucky in that my insurance is paying for it, but I'm beginning to worry that it won't work for me. I have seen some exciting photos of others' results on this drug. Of those who are getting results, how many weeks before you actually saw hair growth? I'm at 6 weeks and I'm starting to panic. Please give me an idea of how long you took it before you knew it was working. Thanks so much!
Replies to This Discussion
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Permalink Reply by Tamer on
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Tuesday will be the start to my 10th week. The first few weeks I feel like hair loss halted its progression. I saw vellus growth in a lot of less stubborn areas. However my second month, things kind of slowed down big time. Noticed less vellus (almost as if some disappeared), I became worried like you. Like CWS said, all of us have varying immune systems with differing tolerances, and for me you, we may simply require more time on the drug and/or a higher dosage. My hair is falling still though. However, the last few days I realized the vellus I had somewhat lost in a few sections is now returning with color, which is great news. I guess it was just the vellus that was shifting to terminal when I noticed the vellus had fallen!
I just got my blood work checked yesterday while visiting my dermatologist and I am waiting on the results. I will be probably jumping to 3 pills a day. My loss is more diffuse now, strangely, as I never had diffuse alopecia. I also noticed that the diffuse areas are in the same areas that I had lost originally but then regrew years ago. I'm going to start using high strength minoxidil in those areas as it seems to be extremely effective (search Belgravia Centre) in conjunction with Xeljanz.
So overall, the good news is that my dermatologist confirmed I have vellus on 85% of my bald areas, and especially my front hairline, it is completely reshaping to its normal hairline with dark hairs. I also noticed on my arms and legs that are missing some hair, a lot of follicles are being "opened" so to speak. I can see the regrowth beginning. So it without a doubt is working. Maybe all this shedding is new hair pushing old ones out?? I hope.
One thing about my body is that it's extremely adaptive to medications. My dermatologist even suggested me to switch to Ruxolitinib, so I am currently trying to work that out as I am on my last free month of Xeljanz. Jakafi (ruxolitinib) works more effectively and is at a higher dosage, so I'm trying to jump ships. (They also have a copay program). Otherwise, if that doesn't pan out I will continue Xeljanz and hang tight. Patience is a virtue.
P.S. I even became concerned, thinking it was possibly a form of scarring alopecia. My dermatologist confirmed that my follicles are indeed alive and well, thank god. So don't panic!
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Thank you for your reply and encouragement. I have been on this journey for years now, but it is still so difficult to be patient. I am happy for your progress. Please continue to keep us updated.Thanks again!
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I'm on week 7 and have just barely started seeing growth on my face and arms. Everyone says it takes time so just give it a little. I'm going to stay on it for at least a year. Just be thankful you don't have to pay for it. What kind of insurance do you have that you were able to get it covered?
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Okay, Manman, I am trying to give it time, but sometimes I get very nervous and worried that this will be another false hope. I appreciate your response more than you know. I just need to hear from others who have been there. Are you AU? Have you seen any regrowth on your scalp yet?
I have Anthem insurance. My doctor sent them a list of all the other medications I've tried and research indicating that there is reason to believe that Xeljanz will benefit me. Once I met my $3000 deductible, they began paying 100% of the cost. Good luck in getting your insurance to cover it! Keep us updated please. Success for some of us is the inspiration for all of us.
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That's awesome. I've been AU for a couple years and no nothing on my scalp yet. But two weeks ago I could count every hair on my face and now that's impossible... for the first time in 3 years. So I'm pretty convinced it's working.
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Merry... hang in there. I've been AU for 4 years and I firmly believe mine was caused by stress...so worrying and stressing about it isn't going to do you any good. Like you, I've tried everything (topical sensitizers, sulfa, plaquenil, acupuncture, herbs, ozone, glutathione and the list goes on) literally traveled the world to figure this out. And the only thing I believe that has helped to date is completely clean eating. I tried oral steroids a oouple years back and got a TON of vellus hair all over...but i gained a ton of weight and felt like hell. I stopped and it all fell out. Today I have the same amount of vellus hair that I did from that and I think it's because of diet... but I just can't get terminal hair to grow. I'm starting my second week of Xeljanz and my vellus hair is standing on end. I feel like I'm seeing more vellus hair on my arms and face. Don't panic... it will work on you too. Just say calm and keep reading the positive posts on this sight. It will happen... just might take a couple more months. I'll be updating my progress... hopefully sooner than later.. :)
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I have been on Xeljanz for 32 days to be exact. I believe we all respond completely differently and it all depends on the severity of how our bodies handle things. My alopecia had just fired up again right before starting Xeljanz and within 2 weeks of being on it I have growth in my eyebrows and eyelashes. Now, keep in mind I have Diffuse Alopecia Areata, so each type will respond differently. Areas that were completely smooth, now have white/clear hairs that can be seen in the light. My facial hair has tons of vellus hairs that I can feel, yet are not visible to others. My lab work came back last week normal. I do believe it is working, as my eyebrows have never responded to anything so quick, and each day new hairs are showing through. I am learning that patience is a must.
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Permalink Reply by AlopeciaDestroyedMyLife on
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Hi Merry,
Take it from me , 6 weeks is way too soon. I only started sprouting dark hairs at month 7 and that's at 3 pills a day.
I would only worry about it after you have been on Xeljanz for a full year and you have nothing not in vellus hairs. It's pretty unlikely that would happen . The science is there and the hair should grow eventually.
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Hi Merry: I am exactly where you are, six weeks. I have been AU for the last four months, AA two years prior to that. Like you, I was worried it was not working, but I just recently began seeing tiny vellus hair all over my scalp. It is very hard to see except in certain light. Are you sure there is nothing yet? Sometimes it is really hard to see and you have to really look in bright light. Anyway, that is all I have so far, nothing anywhere else. It is a little discouraging when you see the amazing results that some other people are having, but like ADML said, we are still very early as far as time goes and everyone seems to respond differently, some faster than others.
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Hi Merry! I am just about at 8 weeks and understand what you're going through. The first month I had a lot of vellus growth on my head and I got regrowth of my eyebrows and they are terminal which is great. The past month I don't feel like much has happened but know that it will take time.
Like most of the people on here I have been down the path of trying different treatments where the results would take months... if they worked. Squaric acid, methotrexate, even gluten free, sugar free etc for an entire year. It was a lot of waiting for results to no avail. So I can understand the anxiety you must feel that this may be just another treatment that doesn't have the results you want. But I feel like some progress is better than none and we must be on the right track! Sorry to sound redundant but like the others said.. it will just take time (HOPEFULLY). I know we have heard that before with other treatments but I really believe this will be different. Such an emotional roller coaster with this disease! Good luck and keep us posted!
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Thanks, everyone, for the encouragement! I feel more confident now. I went back to the doctor today. My labs were all good so he is upping my dosage to 15 mg per day. He said I might start to see some hair at about month 4, but it could be longer, especially since we started at a low dose. Good luck to all! Dare we all hope? I think so.
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