3 ms·

I've had alopecia universalis for the past two years, so it's exciting to see new research in this area. However, the drug in question (tofacitinib) is still an

I've had alopecia universalis for the past two years, so it's exciting to see new research in this area. However, the drug in question (tofacitinib) is still an immunosuppresant, with some serious side effects (http://www.fda.gov/downloads/Drugs/DrugSafety/UCM330702.pdf http://www.fda.gov/downloads/Drugs/DrugSafety/UCM330702.pdf) -- so I'll be watching the clinical trials closely. The original paper that's been submitted to Nature is worth a read: http://www.nature.com/jid/journal/vaop/naam/pdf/jid2014260a.pdf http://www.nature.com/jid/journal/vaop/naam/pdf/jid2014260a....

mmohebbi 12y ago
It does look like it has some serious side effects, including an FDA blackbox warning. You can find a more readable version of this FDA product label here: http://www.iodine.com/label/xeljanz http://www.iodine.com/label/xeljanz (shameless plug)
taeric 12y ago
I was curious about that. Seems somewhat obvious that an immunosuppresant would work, I guess it is the potency that is impressive? For disclosure, I don't have universalis, yet, so I'm not overly concerned with hair growth at my age. However, I do sometimes worry that I passed this on to my daughters. While I don't think alopecia is the worst thing in the world, it would ease my mind to know that my daughters might not ever even have to worry about it.
- mglukhovsky 12y ago
  As I understand, what's exciting is that tofacitinib isn't a corticosteroid that we're used to seeing, but a JAK inhibitor -- a class of potential drugs that have a very different approach towards suppressing immune function (specifically targeting cytokine signaling.) Tofacitinib was the first JAK inhibitor to be approved by the FDA. This was a super-interesting paper from 2012 that goes into more detail on JAK inhibitors and why they're interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419278/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419278/ I completely understand your concern about your daughters. I'm lucky that baldness is culturally accepted for adult men (and even encouraged), so I don't feel too self-conscious about alopecia. Hopefully we'll get a better handle on autoimmune conditions with this new class of drugs. Until then, organizations like NAAF (http://www.naaf.org/ http://www.naaf.org/) are wonderful in helping people with alopecia cope with its medical, emotional, and psychological impact.
  - taeric 12y ago
    Makes some sense. Same for me on the cultural acceptance. Though, I was very hesitant to bite the bullet and shave my head completely. I just know that even for me, it was somewhat stressful to have random parts of my hair go missing. Doesn't help that I rarely look at myself in a mirror, so I wouldn't even always know when I was missing more hair. Would just get the occasional, "why did you shave right above your ear?" Nowdays, though, it is just funny. My legs have spots where I have lost a lot of hair. Some folks assume it is because I bike. Explaining that I will likely lose all of my hair is one that I don't think most folks believe. At any rate, if it were stressful for me, I can only imagine it would be worse for my daughters. Luckily, to date they have had absolutely none of my difficulties growing up. No allergies or anything.
NamTaf 12y ago
Immunosuppressants can have a whole load of side-effects since you're effectively nuking the body's natural defence mechanism. The ones I've used (Prednisone, for asthma and allergies) have always been in pill form which is untargetted, so whilst you may knock off the immune response causing the primary symptom, you also shut down a whole host of other systems too. This has been one of the biggest side-effects for me. What will be interesting is whether a topical cream can perform targetted application of this - shove it on your scalp for a few months and it locally modulates the immune response to the follicles and allows for hair growth. I'm not nearly familiar enough with the medical processes behind this to know whether you can do this or whether it has to be regulated at some other location. As an aside, the whole field of computational medical research excites me. Folding@Home and the like have been the first foray into this, but I suspect we'll see a continued rapid expansion of this as we harness huge computational capability to explore modifications to processes to discover a whole host of unknown but useful side-effects from existing medications. I suspect it's likely the next big field.
- mglukhovsky 12y ago
  Steroids like Prednisone were the recommended course of treatment by doctors when I was first diagnosed -- a massive dose of oral steroids for months. Rheumatologists said in no uncertain terms that this was likely going to have complications and long-term health consequences. I decided it wasn't worth it for what amounts to a cosmetic change. From what I've read, tofacitinib is a a JAK inhibitor (http://en.wikipedia.org/wiki/Janus_kinase_inhibitor http://en.wikipedia.org/wiki/Janus_kinase_inhibitor), as opposed to a cortoicosteroid like Prednisone. It inhibits the activity of a very specific family of enzymes that play a part in regulation of the immune system (cytokine signalling). It makes a ton of sense to dispense it as a topical cream to limit the potentially complex side effects. I'm also curious whether it's more or less effective for scarring vs. non-scarring alopecia, since scarring alopecia is characterized by active inflammation, and tofacitinib is supposed to be successful in reducing inflammation at the right dosage. If someone has more background in this area, I'd appreciate more details. JAK inhibitors seem like an exciting area of research!
  - med_student 12y ago
mr_spothawk 12y ago
I've had AU for the past 4 years, progressed from AA onset in 2006 (i think). It's good to see something in teh pipeline, but jeeze the side effects are serious. Though, I'll bet those are folks on all kinds of other meds at the same time. I'll also be keeping a close eye on the trials... in the end, it's not worth catching skin cancer just to have to pay for haircuts again.

mmohebbi 12y ago

It does look like it has some serious side effects, including an FDA blackbox warning. You can find a more readable version of this FDA product label here: http://www.iodine.com/label/xeljanz http://www.iodine.com/label/xeljanz (shameless plug)

taeric 12y ago

I was curious about that. Seems somewhat obvious that an immunosuppresant would work, I guess it is the potency that is impressive? For disclosure, I don't have universalis, yet, so I'm not overly concerned with hair growth at my age. However, I do sometimes worry that I passed this on to my daughters. While I don't think alopecia is the worst thing in the world, it would ease my mind to know that my daughters might not ever even have to worry about it.

mglukhovsky 12y ago
As I understand, what's exciting is that tofacitinib isn't a corticosteroid that we're used to seeing, but a JAK inhibitor -- a class of potential drugs that have a very different approach towards suppressing immune function (specifically targeting cytokine signaling.) Tofacitinib was the first JAK inhibitor to be approved by the FDA. This was a super-interesting paper from 2012 that goes into more detail on JAK inhibitors and why they're interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419278/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419278/ I completely understand your concern about your daughters. I'm lucky that baldness is culturally accepted for adult men (and even encouraged), so I don't feel too self-conscious about alopecia. Hopefully we'll get a better handle on autoimmune conditions with this new class of drugs. Until then, organizations like NAAF (http://www.naaf.org/ http://www.naaf.org/) are wonderful in helping people with alopecia cope with its medical, emotional, and psychological impact.
- taeric 12y ago
  Makes some sense. Same for me on the cultural acceptance. Though, I was very hesitant to bite the bullet and shave my head completely. I just know that even for me, it was somewhat stressful to have random parts of my hair go missing. Doesn't help that I rarely look at myself in a mirror, so I wouldn't even always know when I was missing more hair. Would just get the occasional, "why did you shave right above your ear?" Nowdays, though, it is just funny. My legs have spots where I have lost a lot of hair. Some folks assume it is because I bike. Explaining that I will likely lose all of my hair is one that I don't think most folks believe. At any rate, if it were stressful for me, I can only imagine it would be worse for my daughters. Luckily, to date they have had absolutely none of my difficulties growing up. No allergies or anything.

NamTaf 12y ago

Immunosuppressants can have a whole load of side-effects since you're effectively nuking the body's natural defence mechanism. The ones I've used (Prednisone, for asthma and allergies) have always been in pill form which is untargetted, so whilst you may knock off the immune response causing the primary symptom, you also shut down a whole host of other systems too. This has been one of the biggest side-effects for me. What will be interesting is whether a topical cream can perform targetted application of this - shove it on your scalp for a few months and it locally modulates the immune response to the follicles and allows for hair growth. I'm not nearly familiar enough with the medical processes behind this to know whether you can do this or whether it has to be regulated at some other location. As an aside, the whole field of computational medical research excites me. Folding@Home and the like have been the first foray into this, but I suspect we'll see a continued rapid expansion of this as we harness huge computational capability to explore modifications to processes to discover a whole host of unknown but useful side-effects from existing medications. I suspect it's likely the next big field.

mglukhovsky 12y ago
Steroids like Prednisone were the recommended course of treatment by doctors when I was first diagnosed -- a massive dose of oral steroids for months. Rheumatologists said in no uncertain terms that this was likely going to have complications and long-term health consequences. I decided it wasn't worth it for what amounts to a cosmetic change. From what I've read, tofacitinib is a a JAK inhibitor (http://en.wikipedia.org/wiki/Janus_kinase_inhibitor http://en.wikipedia.org/wiki/Janus_kinase_inhibitor), as opposed to a cortoicosteroid like Prednisone. It inhibits the activity of a very specific family of enzymes that play a part in regulation of the immune system (cytokine signalling). It makes a ton of sense to dispense it as a topical cream to limit the potentially complex side effects. I'm also curious whether it's more or less effective for scarring vs. non-scarring alopecia, since scarring alopecia is characterized by active inflammation, and tofacitinib is supposed to be successful in reducing inflammation at the right dosage. If someone has more background in this area, I'd appreciate more details. JAK inhibitors seem like an exciting area of research!
- med_student 12y ago

mr_spothawk 12y ago

I've had AU for the past 4 years, progressed from AA onset in 2006 (i think). It's good to see something in teh pipeline, but jeeze the side effects are serious. Though, I'll bet those are folks on all kinds of other meds at the same time. I'll also be keeping a close eye on the trials... in the end, it's not worth catching skin cancer just to have to pay for haircuts again.