Alopecia World
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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 Nor75 on
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Hi, I am not Canadian, therefore do not know any derm in Montreal. But surely there is one and surely there are interesting trials for new medications in your vicinity.
I can give you one advice: get yourself a topical treatment, such as anthralin/dithranol cream or bethametasone 1% valerate foam, asap, in order to have something at home. Use it daily whilst waiting for appointments. Never ever let time elapse whilst spots remain untreated. The risk of deterioration of the disease is at least 30% and that is far too big.
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Hi Nor,
Thanks for your thoughts.
As I mentioned, I've already been seeing a derm regularly since last Nov but treatment options are limited to topicals, kenalog injections, or prednisone & methotrexate here.
Unfortunately Xeljanz is only approved for RA in Canada, so derms can't prescribe it off label like they can in US, or so I'm told.
I restarted kenalog injections again last week, but the area injected is very limited for each session. I also have Clobetasol lotion & Elocom cream, but since it involves my entire body, it's impossible to apply all over.
Makes you really feel helpless.
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Permalink Reply by NaturalAlopeciaWellness.com on
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Hi, sorry to hear about your hair loss. I have no experience with the drugs because my daughter is too young for those (she is 4.5 now and 20 months old when diagnosed with AA), so all we've been doing is topical treatment using oils, essential oils and ginger. We tried gluten-free for a few months but honestly I can't conclude if it's helping or not. The topical treatment IS helpful.
We have seen multiple doctors including paediatric dermatology specialists and no one has looked at the cause of the alopecia. I'm not sure what yours is but my daughter's is said to be due to autoimmunity, and after 3 years we've been told by a paediatrician that her condition is actually not bad (i.e. hair is regrowing instead of progressing to totalis). If the immune system is the problem, then it makes sense to me that we address that. So I started her on plant foods that have been studied for their immuno-modulating properties (ability to rebalance our malfunctioning immune system, the one that mistakenly attacks our hair follicles). These are foods like certain mushrooms - ABM, turkey tail, ganoderma, cordyceps, reishi - and cactus. We just started a week ago so still early to tell, but happy to update with progress as we go.
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Hi, I'm sorry your daughter is going through this. It's been very difficult to deal with for me as an adult. I can't imagine how difficult it must be for a 4 1/2 year old. Poor thing. I wish you and your daughter all the very best.
I really don't know how much of an impact or influence diet has, but I've doing my best to avoid inflammatory foods since this started. Some days I think it helps, other days I feel really hopeless.
Please keep us updated on your daughter's progress. You're not alone.
TC
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Thanks, TC. So far so good here, we are seeing encouraging regrowth and no further patches yet. Will be updating on progress as we go. :)
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Permalink Reply by AlopeciaAngel.com on
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Have you tried the natural and holistic route? I only suggest this route, because it has given me results. After two years of trial and error- I have my hair and health! (Thank the Lord and the Heavens) and am now on a mission to help others too. I have posted on my IG account, (same name) with so many articles about people doing treatments, meds, and all with no results or horrible side effects that have led to other illness and issues. I wrote a book and researched so much and am please to share that my client also see results. Try going holistic. It will take time, but your body will heal from the inside out. Don’t ever expect overnight success. No pill will give you that, bu rest assured, mother nature and natural healing has no negative side effects. Wishing you all the best. www.alopeciaangel.com for more info, pictures, testimonials, my story with pics and much more!
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How do you live with yourself spamming and preying on others with a devastating illness?
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Exactly TC.. Wish there was a way to block these spammers. This person put their 'Ad' in every discussion.
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I have/had alopecia. So I know exactly what you are feeling and going through. Only difference is I took a natural route, and healed myself. Hair came back and all! As mentioned before, I now help others do the same. I am confident that the natural approach can heal you and others here. Its unfortunate that society now wants quick fixes to everything, I guess we are accustomed to it. But if you stop to look and evaluate your life prior to alopecia, perhaps there were red flags and you didn't pay attention. For everyone, its unique. I understand that. There is no preying here... its all about spreading the word and how YOU and everyone else can also heal naturally as I did, and help others now. Why am I so adamant about going holistic? Because the meds that people are taking have severe side effects. In addition, there is not guarantee that it will work. So why wouldn't people start adjusting their diet, lifestyle and overall environment and health first? I've helped adults and children alike, along with people who have been battling alopecia for 15 + years... and now, with some minor adjustments, they see hair growth in less than 2 months. Its possible. Wish you the best in your healing process.
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If somebody know doctor in montreal prescribe xeljanz please share here. thanks
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I have/had alopecia. So I know exactly what you are feeling and going through. Only difference is I took a natural route, and healed myself. Hair came back and all! As mentioned before, I now help others do the same. I am confident that the natural approach can heal you and others here. Its unfortunate that society now wants quick fixes to everything, I guess we are accustomed to it. But if you stop to look and evaluate your life prior to alopecia, perhaps there were red flags and you didn't pay attention. For everyone, its unique. I understand that. There is no preying here... its all about spreading the word and how YOU and everyone else can also heal naturally as I did, and help others now. Why am I so adamant about going holistic? Because the meds that people are taking have severe side effects. In addition, there is not guarantee that it will work. So why wouldn't people start adjusting their diet, lifestyle and overall environment and health first? I've helped adults and children alike, along with people who have been battling alopecia for 15 + years... and now, with some minor adjustments, they see hair growth in less than 2 months. Its possible. Wish you the best in your healing process.
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Permalink Reply by NicoleT on
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Hey TC
Xeljanz is only approved for RA here in the states as well. It is not approved for Alopecia.
But that doesn't mean a doctor cannot prescribe it. It only means that insurance can refuse to pay for it. Maybe try another derm?
Are you seeing doctor king on Decemeber because thats the soonest he can see you?
Or because you will happen to be in NYC then?
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