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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 think it's important to understand that while JAK inhibitors do not suppress the entire immune system, they do suppress the entire JAK signaling mechanism. So, any cell that uses that system to ask the immune system to destroy it, for the good of the whole, is not going to be able to relay the message, including hair follicles, including lung cancer, including lymphoma, including infection, etc. Correct me if I'm wrong but 4 people DIED during the RA trials, and Pfizer admits that one of them was directly related to exposure.
I think where this forum gets a little aggressive is where I see people zealously encouraging those who appear to be self-medicating, and even self-medicating their children with these drugs. Am I reading that right on main huge thread? That someone is in Turkey without a doctor's supervision giving this to a child? Also I think if you have kids of your own, you'd want to really consider what their lives would be like without you. I'm sure they would prefer you bald and alive.
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Permalink Reply by femmemuscle on
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Wow!
Thanks for this information. I did not know anything about this. I was talking to my husband who lost all of his hair at the age of 24.
When someone first posted about this drug, i didn't give it much thought when i asked him:
Would you spend $3,300 a month for a drug if it grew your hair back?
Without hesitation, he said, "Sure would! If only i could wear my hair the way i did back in the day.." His voice trailed off, while he had this kind of wistful smile of his face."
He talked of how he wore his long, blonde hair in the 80's. How his hair helped make him one of the top models at several NYC agencies.
Just looking at him with that look on his face..
But you know what? It was his face that got my attention. Without hair? His features in my opinion were much more obvious. He eyes prettier, and his baldness always gave him a strange "bold/vulnerable" look at the same time.
Would i basically trade that in for him to be sick? To have his already compromised immune system - exacerbated just for some hair.
My boyfriend became bald because of an auto-immune deficiency. Thus, if just walk right up to him, and give him this drug. Well, it's not going to make him any healthier. For the price of the drug? It actually should. It doesn't.
I had no idea that someone died from this drug. Not just some one. 4 people.
I'm not saying that everyone that takes it will die. But with anything, you are taking a gamble. The facts are out there, and the more information we received - whether positive or negative, the better we will be at decision making.
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Here's the Forbes article that mentions the deaths from this drug, Tofacitnib, marketed as Xeljanz by Pfizer: http://www.forbes.com/sites/matthewherper/2011/04/22/pfizers-key-dr...
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I think like you Dom after have had all news about this drug ...before i wanted use now no, it's not the way cause when you stop you relapse we must meet a cure no a tratament .
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My question is this.
The drug may be used as a "bridge". But to where, exactly? Once you take away the drug - the bridge collapses. Is it basically a temporary relief for alopecia, while suppressing the immune system which opens the person systemically to other biological attacks which can lead to worse problems?
Because that's what i'm observing.
Just to have the appearance of having hair? Is it really worth:
Going into debt?
The expense?
Compromising one's health?
Compromising one's finances?
Just to say, "Gee, look, i have temporary hair?"
From what i'm gathering a lot of people that were excited about the drug, are having problems. Can't anyone see this? Or do they believe that over a period of time, their systems will not be compromised?
The ones that are having relapses are getting the almost "template" responses of: "I'm sorry that happened to you, it doesn't work for everyone - but keep us updated."
There are certain ones in particular who are really "pro-X", that seem to downplay these obvious facts, yet are doing the foot-long posts, no pics, and absolutely negating anyone who has a different opinion.
Hell, even the original poster of this thread stopped posting due to the zealous, overbearing, overselling, overreacting.
Xmiracle basically hijacked the whole thread - and made it all about HIM.
It's not a good look, it's disgusting, and the thread is no longer about a simple question that the OP asked.
As i've stated before? and i will state again. Can we please leave the thread open for those who have good/bad experiences that forum members can learn from, question and explore?
Jeez!
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Also, the drug seems to be a stepping stone in the right direction. This means, it's experimental. What we should be asking?
Can we stop trying to deluge the public with something that "doesn't work for everyone" but as other forum members have stated - something to build upon what we have right now?
Less side effects
Is not "temporary"
Will not compromise the system as a whole
Will enrich the immune system versus suppressing it
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I think we should cautiously regard the opinion of anyone that is absolutely for or against the use of this drug for AA treatment. Its worked for some, not worked for others, and side effects at times are experienced - with all that in mind, researchers and doctors are spending time and money developing this into a solution. So not sure what qualifies an anonymous moniker on AW to steer anybody else in one direction or the other.
It was a personal choice for me and it should be a personal choice for anyone else in this position. For some, the choice is easy because its too expensive and insurance won't cover it. Others, like myself, have said I rather pay the money for the chance of a normal head of hair, instead of losing good years of my life to this condition. I've gone into a different type of debt that amounts to 25 years of having this condition and never being able to recall having a normal scalp for an extended period of time. Not even really having known "normal", I still can't, don't, and won't accept it. If you have accepted your condition, and decide the risks of this drug aren't worth the payoff, then the choice is easy for you too. Unfortunately that isn't my situation, and I've chosen that the chance of having quality of life is worth the risks.
And to answer your question about it being a "bridge", for me its a bridge to a more appropriate, less risky medication. I believe that a more suitable treatment is on the horizon, whether that's a topical or something else. For me, its about getting through X treatment relatively unscathed. The good news about this being a temporary solution is that since your hair falls out again once X is stopped, it also means the JAK pathway is no longer being inhibited and it stands to reason that you shouldn't be concerned with developing a problem that you didn't have while on the medication. While on X, I take routine blood and more recently, urine tests to monitor my health so I can stop taking the medication immediately if any abnormalities are detected.
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Permalink Reply by Xeljanzmiracle on
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Good points Cmdd20!
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No one hijacked anything. And I am a WOMAN. Oh, you didn't get that far in your reading yet, lol! But maybe you can relate to the picture you see on the left of EVERY POST I WRITE. Its of me and my husband. I am Xeljanzmiracle, and proud of it, and have as much freedom of speech as you have. And the hair to go with it, lol!
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I like the collapsing bridge metaphor (femmemuscle).
You are tempting out onto the bridge, stop midway, feel your head and then the bridge collapses. It's all washed away!
Too often this is how people feel after these medications...."washed out".
Would anyone give x to a child?
Would anyone give x to their child?
I doubt it.
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I am thankful that current treatments have drawn media and drug company attention to the fact that the majority of people who have alopecia desire treatment. Perhaps one day there will be a cure, but until then those that wish to treat it should do so. Treatment is in the very early experimental stage, and hopefully the price for medication will come down. This experimental phase is the case with most drugs. There's no better way to see if it works, but that which comes with risk.
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True,
But my question is this? If the "risks" have already been proven? If there are people who living proof there are "risks".. Then why keep taking the drug, when the proof is out there of detrimental side effects?
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