Jade
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Jade's Discussions

CRISPR will cure many diseases including alopecia

Started this discussion. Last reply by JustAnotherBaldGuy on Wednesday. 4 Replies

Hi everyone,I wanted to share about the advancing biotechnology CRISPR, which is a gene editing tool that can precisely edit out the gene that causes diseases. It gets to the root of the problem…Continue

Topical calcipotriol (VitD3)

Started Nov 17, 2020 0 Replies

Has anyone used this and what were your results? I found these journal articles (below links) that showed a quicker response and slower relapse rate AND with much less adverse/side effects than the…Continue

My experience with Ruxolitinib

Started this discussion. Last reply by Jade Oct 30, 2020. 5 Replies

I'm 39 and have had patches of AA since 12. I've been able to manage it pretty well with topical clobetasol throughout my life until recently 38 y/o I had a stressful event and it all fell out and…Continue

Tags: jak, inhibitor, universalis, totalis, alopecia

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Latest Activity

JustAnotherBaldGuy replied to Jade's discussion CRISPR will cure many diseases including alopecia
"I've had patchy alopecia areata since 2015. Still have my eyebrows and body hair, but on my head there's a few large patches. For a while now I've been contemplating getting all the hair on my head removed by laser, for that clean,…"
Wednesday
Jade replied to Jade's discussion CRISPR will cure many diseases including alopecia
"Technology is rapidly advancing, so it might not be as far as we think. But we have to do our part and keep this conversation going with doctors and the NAAF to keep this as a goal to find a cure instead of immune suppressing drugs that has…"
Apr 26
Patchylatchy replied to Jade's discussion CRISPR will cure many diseases including alopecia
"when is this envisioned, it really wont help if its 20 years from now"
Apr 26
Maria-dm-02 replied to Jade's discussion CRISPR will cure many diseases including alopecia
"And it's gonna cost more than a million dollars. Most of us won't be able to get it "
Apr 23
Jade commented on HarlyQ's blog post Would you do an Alopecia medication study?
"I am just hopeful with new genome biotechnology like crispr, prime editing etc that they'll finally find a cure. Because alopecia is a genetic disease but the main difficulty is that it involves multiple genes, whereas technology as of right…"
Jan 28
Jade commented on HarlyQ's blog post Would you do an Alopecia medication study?
"Hi, I just left the CTP-543 study which was the ruxolitinib jak inhibitor drug. I was in the study for 2 years. But i decided to stop because although my labs looked fine except for increasing my cholesterol and platelets, i did have a few severe…"
Jan 27
Calihoosier8081 liked Jade's discussion CRISPR will cure many diseases including alopecia
Jan 4
Jade posted a discussion

CRISPR will cure many diseases including alopecia

Hi everyone,I wanted to share about the advancing biotechnology CRISPR, which is a gene editing tool that can precisely edit out the gene that causes diseases. It gets to the root of the problem which is in our dna, the gene expression of this disease making the hair follicle lose immune privilege and allowing it to be attacked. Editing this gene out and replacing it with the gene with immune privilege, our hair will remain intact. Solving this issue is basically curing the disease verses what…See More
Jan 1
Jade posted a discussion

Topical calcipotriol (VitD3)

Has anyone used this and what were your results? I found these journal articles (below links) that showed a quicker response and slower relapse rate AND with much less adverse/side effects than the typical steroid and now jak inhibitors. I wonder why this hasn't been given any attention. Seems like a more viable (and seemingly natural) treatment option.- Topical Calcipotriol Therapy for Mild-to-Moderate…See More
Dec 4, 2020
Jade replied to Jade's discussion My experience with Ruxolitinib
"thanks for sharing your story Vanessa. i'm sorry to hear you're also experiencing rebound inflammation. I know how difficult it is, its been like over a month of increasingly worse eczema spreading everywhere. I'm currently seeking…"
Oct 30, 2020
Vanessa replied to Jade's discussion My experience with Ruxolitinib
"Interesting! I was on Tofacitinib (Beacon) for a little over a year. I had AT when I started (had eyelashes and some other body hair, no eyebrows). I was able to grow eyebrows, better eyelashes, sparse hair on my head. Also gained 10 pounds. I…"
Oct 28, 2020
Jade replied to nexoo's discussion pf-06651600
"I've been in the trial for CTP-543 since Jan 2019 on the 12mg bid with 100% regrowth from having AU for about 3 months and AA prior to that. I discontinued due to side effects of multiple infections, but the worse of it is coming off of the…"
Oct 27, 2020
Satriani replied to Jade's discussion My experience with Ruxolitinib
"sorry to hear that. 12mg is the highest dosage in the trial, maybe too high for you. Good luck"
Oct 23, 2020
Jade replied to Jade's discussion My experience with Ruxolitinib
"Hi Nicole, thanks for the response.  Yes I'm at Stanford and yeah looks like our timeline is similar.   I came off of it the first time was for egg retrieval which now in retrospect probably not the best idea for my…"
Oct 21, 2020
NicoleT replied to Jade's discussion My experience with Ruxolitinib
"well crap. Sounds like we went thru this at right about the same age. Mine was little patches starting in my 20s then full flown AU right about 40 triggerred by IVF Ive never attempted to go off the tofacitanib because i knew all along from the…"
Oct 21, 2020
Jade replied to NicoleT's discussion Update: 1 year on Tobacitinib!
"Hi Nicole, thanks for this post. I recently posted about my experience being on CTP-543 which is the Jakafi version. I was wondering if you're still on a tapering off schedule. I asked my dr at Stanford and he doesn’t have one for me its…"
Oct 21, 2020

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Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

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