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Hi, my story. Need advice.
Hi All,
I've been reading this forum since last Nov 2017, and almost feel like I know some of you here so thought I would join the community and introduce myself.
I've always been an athletic guy, in good shape, great career, and decent looking. Throughout my life I've been told I resemble Tom Cruise, so I felt pretty good about my looks, and had lots of confidence to achieve almost anything.
My story started late Oct 2017 with a bare spot on my beard stubble. I didn't think much of it since I don't grow a beard, I just try not to shave on week-ends. Early Nov 2017 my hair dresser mentioned I had a large bare spot on the back of my head, and suggested I see my Dr.
Went to see my GP, who determined it was AA and nothing to worry about. Gave me some clobetesol lotion and rogaine 5% and said it should be all back to normal within a few months.
By end Dec I had lost 60% of my thick shiny black brown hair and felt devastated. Noticed some hair thinning on my arms and legs as well. GP sent me to a dermatologist, and she started kenalog injections. Lost more hair from my head and hair on my body started thinning. I was felt emotionally crushed and didn't want to go anywhere or do anything, so I took a sabbatical from work.
I live in Montreal Canada and the winters here can be dark, cold and harsh. Spent most of it reading and researching how I could help myself get better. I gave up Gluten, Dairy, ate mostly whole healthy foods. Took Biotin, a probiotic, Curcumin and Resveratrol everyday. Continued working out 4-5 days a week, even though my strength just wasn't there. It was dark and difficult time in my life.
Sometime around end of April, I started noticing some hair regrowing. Some of if it very fine and white, others were dark but thin. I was excited and hopeful. My derm was pleasantly surprised and stopped the kenalog injections.
A few weeks it starting falling out again and seems to be progressing all over. My derm thinks I may end up AU. She wants to put me on Prednisone pulse therapy & Methotrexate, but I've read about a lot of side effects, some long term, and appears it's not that effective in most cases.
I'd really be interested in trying Xeljanz from all the success stories I've read about here, but Xeljanz is only approved for RA here and my derm isn't able to prescribe it off label for AA/AU. Do any of you have any leads on a Dr. in Montreal that can?
I have an appointment with Dr. King at Yale in December, but that's a long way off and I'm worried that I'll lose everything before then and would prefer to start sooner.
Thanks again for this community and the great people in it. Your posts kept me going though a very dark and difficult time. I hope I'll be able to contribute the same back someday.
TC
Replies to This Discussion
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Permalink Reply by TC on
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Hi Nicole,
Unfortunately in Canada, they can't prescribe Xeljanz off label for AA.
I've tried getting an earlier appointment with Dr. King since May but his office said the earliest appointment they had was in December. My derm here wants to put me on prednisone & methotrexate, but I don't want to do this in case Dr. King has an opportunity for any trials. Normally you would be excluded if you're already on any systemic meds. It really sucks just waiting while things are getting worse. Wish I could see King sooner.
How are things going with you since you started Xeljanz? Any side effects?
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Permalink Reply by NicoleT on
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HI!
You should try columbia university as opposed to King at Yale!
They can see you much sooner.
They can put you in the trial or they can just put you on it and they give you a 3 months coupon for xeljanz.
If you want to try my doctor at columbia university dermatology he is AMAZING
https://www.columbiadoctors.org/filamer-kabigting-md
can definitely see you MUCH sooner than Dec!!
THey have as much research on xeljanz for AU as Yale does.
And more doctors!
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Thanks so much Nicole!
I'll schedule an appointment with him and give It a shot. It's only about a 7hr drive from here.
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OH and sorry. No side effects for me.
I had a slight upper respiratory infection when i started (sore throat, cold) but i just took care of myself and it passed super quickly.
Nothing since!
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That's great to hear! I'm so happy for you, and wish you super fast regrowth & great health :)
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I know people have had success with diet, supplements etc.
Ppl with patchy AA mostly.
I SO would have preferred the natural route of course!!
I dont even take tylenol Im not into meds!
Tried natural route for well over a year. Every single thing you cold ever imagine.
Full blown AIP diet for 7 month without a single cheat!
For me, it took a medication (tofacitinib) to stop the attack.
So grateful for this med!
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Amazing!
I LOVE LOVE LOVE him!
First doctor I ever saw who actually cared and helped me!!
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Permalink Reply by cwincos on
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I was in the same situation and did progress to AU trying to find a dr that would treat. It was before Xeljanz and i tried methotrexate/prednisone that just grew stubble. If you haven't increased Vit D, do that. After I quit meds, I lost all the hair. A year later and about a month after going with 5000 units D I had stubble again and it stayed. I tested for a clinical trial for Xeljanz but didn't make the final cut. It was really scary reading all the disclaimers and side affects and got me thinking that of all the autoimmune disorders, this is a better one to have. I've switched to using Hair Up for the last 6 month and have good results -- not the dramatic growth I see with Xeljanz, but hair stays if I don't use product for a couple of weeks and it's just a mix of herbs so no side affect. They are now starting topical application of the medication in Xeljanz and they have started clinical trials. That would be a better solution and I'm glad now I didn't get into the Xeljanz trial. I'd wait it out until it's approved in Canada
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I will suggest you to try natural treatment, lifestyle change, diet, exercise. I have written in my blog what I have done to regrown my hairs after 3 years of suffering from Alopecia Areata with more than 15 patches.
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