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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 Jen on
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I agree completely Dom. It is not a cure and it's dangerous. When you look at the safety profile on the drug the percentage of people who got cancers/malignancies during the RA trials, that was 1.9%. (The most common included 24 lung cancers, 19 breast cancers, 10 lymphomas, and 6 gastric carcinomas. Two more lymphomas turned up after the trials.)
http://www.xeljanzhcp.com/malignancies
When you look at serious infections during the trial (meaning hospitalization from infection) it's 6.5%
http://www.xeljanzhcp.com/serious-infections
So the math on that is 8.4 percent of people get cancer or are hospitalized with infection from exposure to this drug during the trial phase time period. I don't know how long the trials were, but probably not more than a year. And it should be noted that it would be a particularly cruel kind of irony to grow your hair back with this stuff and then loose it again during cancer treatment. Cancer that was caused by the drug.
I don't want to tell people what to do, but I would not take it internally, especially not long term. My understanding of JAK inhibitors is that they turn off the signaling mechanism when a cell is asking the immune system to destroy it for the good of the whole. The problem is when we've turned off that signal systemically, we are going to ignore that signal coming from cancerous and infected cells that really should be destroyed by the immune system.
The reason people overlook this is that they desperately want hair. I personally am interested to see where the topical use of this drug goes and how safe it is when only applied to the skin. It might still be dangerous.
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Permalink Reply by mtran2000 on
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Good points Jen.
When you consider people using a nicotine patch on their arm to quit smoking absorb a lot of the drug. Cream still might absorb a lot in the body also and long term effects are not known. .
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Good points Dom,
Of course it falls out. Wouldn´t it be strange if the t-cells
reacted like: "Hey look, something made us temporarily ineffective, lets never again
attack these hair follicles!"However, topical version with proper vehicle could be preferable treatment,
because much less systemic. Not perfect but better than nothing.
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Hello Moodle,
Forget about hair growing and falling out with Xeljanz. That always happens with these drugs.
You do the reverse cycle of Alopecia (perversely) .
Bald > hair> Bald....when you stop taking them.
You touched on what is the real dangerous problem about this drug.
"Hey look, something made us temporarily ineffective, lets never again
attack these hair follicles!"It's not what this drug does on a temporary basis to the regrowth of hair BUT what else it attacks!
Constantly I read disciples of X rave about Guru X BUT they never discuss how similar this drug is to all the failed other drugs( which are still on the market) and they barely acknowledge that this drug can be very detrimental to your health.
This drug X is just repackaging an old, shoddy product.
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Which drug is is Xeljanz a repackaging of? Tofacitinib and ruxolitinib are the only two approved JAK inhibitors to date in the US as far as I know. Are you aware of others?
I can't speak for everyone but I'm sure I speak for most that people who take X are concerned about the side effects. Between the cost, uncertainty of it working, and potential for undesired impacts on our bodies, the situation is not ideal. But for a lot of people, that's what they have chosen to resort to because its better than the alternative.
I completely disagree with your sentiment that this is similar to other failed drugs. Its been proven to work on many people, not every person, systemically. It appears that people are having some success with topical ruxolitinib. Researchers and doctors are clearly zeroing in on what in our bodies is causing us to lose and not regrow our hair. Because this drug falls in the category of immunosuppressant doesn't mean it should be painted with the same broad brush as other drugs in that category which haven't been effective.
Personally, taking X is a temporary solution for me. Progress on topical ruxolitinib has been encouraging and I hope that it becomes available (and affordable) soon. If and when it does, I bet you'll be singing a much different tune.
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Permalink Reply by Xeljanzmiracle on
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He is negative on EVERY POST he writes on AW cmdd20. It doesn't matter what the topic is. I don't even bother replying any more to him and others who don't do their research and continue to make blanket condemnations of a drug they haven't tried. If they were REALLY worried about OUR HEALTH, they would express it in a kinder, more compassionate way. Sometimes I feel they are just jealous haters. If they want to stay bald, let them, lol! In the meantime, our hair continues to grow. From my observation, the ONLY people unhappy with Xeljanz are the few who have not responded (and I wonder if their alopecia is autoimmune) and the people WHO HAVE NOT TRIED IT. Even the few who relapsed, were ESTACTIC about their regrowth! Hope and positivity go a LOOONNNGG way towards success in any endeavor. But without it, you will fail for sure. Like someone once said "You have to BELIEVE IT to acheive it." Hold on to YOUR faith everyone!
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hey Xel-miracle..
You said you were going to post pics of your hair growth. I see that you keep posting responses extolling the virtues of this drug? Yet, you haven't provided any pics since you've posted that statement.
Just debating.. If you can take so much time waiting for posts to debate - just post your pics.
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Mtran2000, I disagree. Most people on Xeljanz do have a scalpful of hair in about 6 months. I'm one of them. I'm waiting for my next doctor's appointment to post updated pictures. In the meantime, go to my discussion entitled "From Totally Bald to Regrowth in One Month!" ALL of my regrowth pictures and updates are there. I don't like the negativity that has been on this topic since Day 1. I don't like the term "cosmetically acceptable" and I already explained why. I'm familiar with most of the haters on here. I have replied personally to each of you before, but no longer. Mtran2000, lots of others on here have suggested you check out other individuals who have a full head of hair since Kyle Rhodes but you haven't. Many of us on ADML's thread have been posting, sharing regrowth pictures and ENCOURAGING each other for a year and a half. I started posting 3 weeks before my regrowth in July, 2015. Personally, I have read EVERY SINGLE REPLY on there, going back to August, 2014. That is why I'm familiar with other's experience AND PICTURES) of regrowth on Xeljanz. Everyone is not going to post their pictures on this thread when they have ALREADY DONE SO ON ADML's or THEIR OWN TOPIC, like Susan McAdam's has done. We don't feel we have to prove anything to anyone else. We post our pictures to ENCOURAGE one another. So you haters all stay over here with your doubts and negativity and unwillingness to READ thru the almost 3,000 replies on ADML's and other's thread. At least read and look at pictures from the last 6 month's worth. All of my regrowth pictures are on there, as well as on my personal topic mentioned above.
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could you please just post those pics here? i really don't have time to read all that.
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Ha Ha...I will disagree that ALL my posts are negative.
Women's alopecia Top Ten!
Posted by Dom on November 22, 2010 at 5:43pm
View BlogA beautiful woman with Alopecia comes out into her back garden every morning and shouts
"Praise the Lord, can i have my hair back?"
And every morning the athiest next door yells back, "There is no God and no cure for Alopecia"
This goes on for weeks.
As time goes by the lady runs into financial difficulties and her wig is becoming mangy.
She goes into her garden and says, "Praise the Lord, can i have my hair back and can you help me financially?"
The next morning she goes into garden and there is a $3000 human hair wig.
She shouts, "Praise the lord"
The athiest jumps out from behind the bush and shouts, "Ha I bought that wig. There is no God and no cure for Alopecia"
The lady looks at him and smiles.
She shouts, "Praise the Lord. Not only did you provide me with a wig, you made the devil pay for it"Am I the athiest? ha ha
Women's Alopecia Top Ten
1 Can appreciate a great wig but not as a 'comfort blanket' A wig is an extension of your beauty and not a 'comfort blanket'
2 Knows that most people cannot comprehend Alopecia and is cool about it.
3 Knows that most people will understand if you communicate.
4 Regrowth is not a time limit.
5 Won't bat an eye at hair adverts/products
6 Can appreciate Celebrities great hair without going green (maybe higher or impossible?)
7 Can sit calmly looking at wig brochures and demand the perfect specification.
8 A woman who cares more about her heels than her hair.
9 Help is not weakness.
10 A woman her folds her arms, stamps her foot and gives a look that only a woman can; whilst saying internally " I have better things to think about than regrowth. I can look glam in my new wig on Friday.
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I look at the topic of Alopecia much differently than years before.
I believe now that emphasis should be placed on the practical aspects of finding a "look" for yourself and managing the mental side of Alopecia.
If you ask people. Are they happier doing the above or looking for treatments? I know the answer!
This is a good article on X.
http://canaaf.org/dr-donovans-response-tofacitinib-xeljanz-treating...
This in my opinion is a balanced article.
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