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Anyone have cosmetically acceptable regrowth with Xeljanz?
I mean does anyone have regrowth like Kyle Rhodes from the Yale study using Xeljanz? So far the pictures I have seen are not nearly as promising. Link below with pictures of Rhodes regrowth
http://www.cnn.com/2014/06/20/health/baldness-cure-alopecia/
Replies to This Discussion
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Permalink Reply by Xeljanzmiracle on
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THANK YOU Beth!
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Permalink Reply by femmemuscle on
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Wow!
I think you're right, Dom. I work in the medical field, and watch people who have to DC (or discontinue) a certain type of medication and let their immune system "kick back in" .. It's amazing how the body works. And how hard it works. This, i've seen specifically with cancer survivors.
Now, i don't think i would have a problem with this, if my immune system is suppressed for my very survival. If it's necessary to have that drug to work for a compromised system due to something fatal - i.e, cancer, croons's disease, etc. Yes.. i'd take that drug!
But what i don't understand, is why are people willing to compromise a clearly autonomous unit (the human body) - for temporary outward appearance?
I think if a person does give this to their child
They would hopefully wait until the kid is old enough to make that decision. And also show them both sides to the research.
I'd hate to be sitting here watching T.V., and one of those informercials with the lawyer is there saying:
"If you or your loved one has been hospitalized or have died from this drug X - please call this 1 800 number right away to file a lawsuit."
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Your right this is a powerful drug and I have thought of this drug when they show those comercials for lawyers on tv!We are all so desperate to get our hair back.Its not working for me and I'm going to start weaning myself off it.But we shouldn't be giving medical advice to people a specially with out blood work being done and not under a Doctors care. It is kind of scary people are self medicating themselves and that's when something serious is going to happen and we will never get any drug for AA approved.
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Permalink Reply by Jen on
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I don't think anyone will be able to sue for the effects of off-label use of a drug either.
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Oh, I think they can..
Lawyers are a nasty breed.. they can sue the spots off of a leopard these days..
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I would think you'd need pretty deep pockets to out-lawyer Pfizer on a drug that wasn't approved for this use?
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This is a very interesting post about AU, use of a suppressant drug, a strong immune system, falling hair and (for me) the correct usage of an immune suppressant drug i.e to relieve pain and save lives.
+ you have a person finding acceptance.
"I developed Rheumatoid Arthritis and started taking methotrexate to stop the pain and swelling in my fingers- this drug lowers your immune system and stops further joint damage, however 5 months after starting it, my har started to grow back! I spent 7 years completely AU and now have had
my hair back for 4 years. If I miss a few weeks, due to elevated liver enzymes. I start getting bald spots again (AA) which I'm sure would be AU within 6 months. Never did get my eyelashes or eyebrows back. This is such a weird disease. There are no rules! Before the metho started to lowery immune system I was extremely healthy- no colds or flu- now I get occasional typical stuff. Somedays I hate my hair and long to be AU again (believe it or not- never thought I would say that)
Life was easier with no hair - I had a beautiful Freedom wig when I wanted hair but also enjoyed the freedom and fresh feeling of my bare head or the cool look of a bandana. Life is all about your attitude of your situation - no matter what stage or circumstance you find yourself in. The most valuable lesson I learned through all this is that there is more to life than hair and it does not define who you are! Those that love you - do with or without a bald head. One morning I woke up to my 4 year old rubbing my head repeating a mantra "my mom has no hair, my mom has no hair" over and over. I asked him of
It bothered him because I was always worried I was an embarrassment to my children and my husband. He announced that he liked my head- it was pretty and shiny :) Now he is 16, so half
His life I was bald and it didn't seem to ruin him! Ha ha
My 23 year old daughter always wanted to shave her head in support of me but I wouldn't let her, however through 5 years of university and now her first year as a school teacher, she has thrived off my strength and spirit and attitude to make her the person she is today.
I think Alopecia makes us and the people around us better people! All I will say about my loving, wonderful high school sweet heart husband is that he still really enjoys the fact that my bikini line never came back either! Ha ha.,,,,TMI.,,.ha ha
Well that's rant/blog contribution :)
Love to you all!"Kim Culberson
Reply by Kim Culberson on June 11, 2013 at 10:49pm
What a great lady and post......
You have to take these drugs continuously to keep what hair appears. If you become sick, blood levels change or miss taking drug. It falls out!
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Permalink Reply by Fabs on
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Alopecia Areata is NOT a disability. You have to live with it. Don't fool yourself. Don't intoxicate yourself. Be graceful with what you have. Change your attitude and you'll be fine. By taking all these so called "medicines"you waste your precious time... you only live once... go out, have fun, dream, study, train and become succesfull. If you don't change it won't get better, it will only get worse.
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I love y'all's attitude and I wish sometimes that I knew with certainty that alopecia would be permanent for me, so that I could completely move on. Good for you all that you have.
However, I think you overlook that this is still an illness. Alopecia itself is not life-threatening but how many autoimmune conditions are we in line to get if we don't take it seriously? Our immune systems are inflamed. Our hair loss is the external symptom of that. I personally am actively avoiding Hashimoto's and Diabetes, which both also run in my family. We can take autoimmune conditions like those seriously, right?
For me, it's impossible not to be mesmerized by the amazing growth some long standing AU individuals have had with JAK inhibitors. I agree with you that these drugs are not a cure and are dangerous internally. I agree that we have all been humbled and learned a ton from the experience of Alopecia. But the idea that there could be another outcome is quite tantalizing. What if by a combination of diet, topical formulations and low stress we could recover? If you aren't also interested in these drugs, I am curious why you are participating here, on this treatment and research section of the forum?
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Permalink Reply by sadele on
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Well said Jen. You wrote my exact sentiments.
I also agree with considering the combination of treatments; diet, lower stress and medication or injections. This disorder is not a one size fits all, so what may work beautifully for one individual may do nothing for someone else. There is so much autonomy yet we all want to see the same outcome: to have our hair back.
I am very much open to the progression of these medications and will follow all the research that is happening. We have to be our own advocates.
I'm on month 8 of Xeljanz, and while I have growth in my head, legs and a few lashes, I still can not go out with a head cover or wig. I'm staying the course and will fight until I have my hair back.
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Thanks Jen and Sadele you snapped me out of my funk.I was ready to give up after reading all these doom and gloom posts but dam I'm not going to turn into a quiter.I want my hair back! I'm going to stay the course and if this doesn't work for me I know there are new drugs coming down the pipeline.
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That's right Football Fan. Don't give up hope and don't give in to the naysayers's defeatist attitudes! Mtran2000, the answer to your question, which is the topic of this thread is YES!!!!
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