Who had take Accutane for acne? Come here!! we also have CCCAlopecia!!

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lacaz

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Hey my friends!
guys like me who had take in the past full accutane treatment for acne, look at this, we not only have Androgenetic Alopecia, but surely also CCCA!

At the last 'Norht American Hair society scientific meeting' in may 2015, 4 well known researchers presented this study :


"Altered vitaminA metabolism/signaling in CCCA patients"

Liye Suo, Wilma F. Bergfeld, Natasha Mesinkovska, Helen B. Everts. [FONT=Calibri,Calibri][FONT=Calibri,Calibri]Poster #665[/FONT][/FONT]​
They made the direct link between the two. And accutane is exactly what altered our vitA metabolism for life to not have acne anymore


Two others studies that link CCCA hairloss with alteration of vitaminA metabolism/signaling :

https://etd.ohiolink.edu/ap/10?0::NO...D_SUBID:103145
http://www.nature.com/jid/journal/v1...d2012393a.html


CCCA act in combination with Androgenetic Alopecia, so impossible to diagnosted it as the pattern loss is classic


Our metabolism and RA receptors don't synthetise normally the VitaminA anymore , and that lead of high levels of all trans retinoic acid in our tissues (this acid is what inhibit the function of sebaceous glands)

In different studies, they show how all trans retinoic acid inhibit the Wnt pathway! (the most important for hair !)



Before those studies, they didn't know the factors of CCCA. But they know the consequence: Lichen planopiloris (LPP)
"LPP is an immune-mediated disorder characterized by an autoreactive, lymphocytic inflammatory process against an unknown self-antigen. In LPP, follicular antigens may be the target of a cell-mediated cytotoxic immune reaction


In other studies, they show relation between all trans retinoic acids and citotoxicity!


Everything make sense. CCCA (with or without active LPP) is AGGRAVATING AND ACCELERATING OUR Androgenetic Alopecia. We have to regulate those continuous acids levels, and what accutane changed in our vitA metabolism. If we just fight against DHT it's a loosing game, as we still have low Wnt pathway because of atRA levels,and also LPP inflammation that destroy all the follicles.


In the studies, they talk about pharmaceutical Aldh1a1 inhibitor.

Inhibit this Aldh1a1 lower the all trans retinoic acid levels in all the tissues!

This inhbitor is our best chance to slow hair loss if you have also CCCA! We need a professor to help us to make this chemical compound for us, or to make clinical trials, or even make our own command group in private lab if no one want to help

these researchers are some of the best in the world, Our vitaminA metabolism/signaling is altered, and we need to do something, cause the more we wait, the more dead follicles we have, as CCCA is cicatricial, so no more stem cells Under the bald areas

I come here to search help, on what we could, who to contact to help us to buy this ihnibitor, I'm in France, and it's rare disease, no one knows anything!

in the first study I post, the researcher say he developpment a better selective Aldh1A1 inhibitor.

in this other study, they found 30 selective Aldh1A1 inhibitors!
http://www.sciencedirect.com/science/article/pii/S0009279714003263
We just need one lol !! This could the best solution we could ever have to slow the processus


Those dermato/researchers are all in usa, but I don't speak well English in oral so I can't phone to have a normal discussion, infos etc..



ps: sorry for the red color, I don't know why, i don't success to change it, I bug


and a last thing, RA ihnibit sebaceous gland function and his stemcells, and in another study, they explain how sebaceous glands dysfunction is linked to lichen planopilaris!
 
F

Folirexic

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Great find!

I took accutane as a teen for acne and have been taking propecia now for over a year and have seen my hair loss progress. It always seemed strange to me..I started with propecia before anything was noticeable and it is confirmed worse by doctors and those around me despite the use of propecia. I always wondered if accutane had something to do with it.

Can someone please in "plain english" explain to me what exactly this study means and what I (along with other accutane users) can do to better our chances in this fight.

Best
 
S

STAYSTRONG88

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Damn, is this a guaranteed thing for accutane users to develope or have? My hair is thin and brittle since accutane.
 
L

lacaz

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These researchers make direct link between CCCA and altered VitA metabolism/signaling.
Accutane changed our metabolism regarding vitA synthetisation, RA receptors, levels of atRA, etc.. So at the minimum we have those continuous high atRA levels that inhibit our wnt pathway and shrink the sebaceous glands, so DHT can do his job easily on already weak follicles and result in an accelereted Androgenetic Alopecia. But we may also have that Lichen planopiloris active (LPP) inflammation that also kill all our follicles (even our stem cells!) and is linked to this Altered vitA metabolism.

There's no cure for LPP cause they didn't know the factors (and different hair loss pattern in result, CCCA,FFA,PCA,..
there is just strong medication to try to stabilize the disease. With a biopsie you can tell if you have LPP active.

BUT with that recent study that linked Altered vitA metabolism and CCCA,in our case we know that it's accutane who changed things in our vitA body regulation/synthetisation , and for life! So we have to take that ALDH1A1 inhibitor to regulate what is not going well. In another study it is show how inhibit aldh1a1 result in lower atRA levels in specific tissues, so it's exactly what we would need, cause those acids levels inhibit our wnt pathway! And is surely the cause of that active lymphocytic inflammation

So we really need to take that inhibitor, it could really slow (maybe stop) the CCCA processus. Of course we also have to fight classic Androgenetic Alopecia as it work in combination. But we have to stop that CCCA as it's REALLY accelerating the whole baldness process. And this CCCA/LPP will kill all the follicles! Even the donor area will be lost if we just fight DHT, so would mean no possibilities for hair transplant, and even maybe stem cell therapy in the future, as all our hair follicles would be too affected . So we have to do something before it's too late, in my case im 27 already nwd4/5 and loosing all my donor area

this inhibitor exist and could really help us to regulate what accutane changed in our body. there's several inhibitors, with their chemical formulations, but we would need the help of those recent researchers for the dosage, the way of administration, which lab could make the compound,etc..

Do your researchs regarding : CCCA/atRA/Aldh1a1/LPP, etc.. and you will see that we don't have to fight only against DHT! But also against that altered vitA metabolism induced by accutane, that is probably the main factor of our aggressive baldness.
 
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blondi

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I was on accutane as a teenager, and I noticed my hair starting to recede around the time I went off it. I think it could be a coincidence though to be honest. But are you saying Finasteride won't work if you were a accutane user? I find this somewhat hard to believe. Also I've read on here people have used Accutane to help their MBP and get positive effects... I wouldn't recommend this but that's some food for thought.
 
Giiizmo

Giiizmo

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I find it hard to believe that a drug can be responsible for my onset of alopecia 13-14 years later. Maybe a link can be drawn between a beginning or aggravation of existing alopecia in a 2-3 year interval but anything beyond that sounds far-fetched to me.

In other words, I'd guess that maybe it can cause or aggravate alopecia for some accutane users but it's not an obligatory side-effect (although it is listed as one for accutane), as your post would suggest.
 
L

lacaz

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No giiizmo , it's not like a 2,3 year interval. It takes place for life and it continue to aggravate your baldness.
Accutane changed how our metabolism synthetise vitaminA,and that lead to high levels of atRA in our tissues,every day and every hour.
it's a change in our RA receptors,etc so it continue for all the life, that's why majority of accutane users don't have acne anymore during their life ( but also a change in how our skin react to the sun,etc)

For an exemple, if we have just Androgenetic Alopecia,the baldness process can take place during 30 years, but in combination with CCCA this process will take place in 15 years or so
AtRA inhibit the Wnt pathway ! and the good function of sebaceous gland. So DHT don't have to do much to kill already affected follicles. And if there's LPP inflammation, it's even worse in the acceleration

It's not 'my theory' guys, it comes from some of the best researchers, and they explained in détails how altered vitA metabolism/signaling lead to hairloss. And how CCCA is working!


@Blondi, no i don't say that. Propecia will work against dht. But it's a matter of proportion, if the hair loss is 50% due to CCCA and 50 to Androgenetic Alopecia, you only fight against one problem.And the proportion of rapid hairloss expansion could really be 80% due to CCCA and just 20% to Androgenetic Alopecia, for exemple/ Or even 100% due to CCCA for those one who were not predisposed to Androgenetic Alopecia.
So if we only fight against DHT, it's a loosing game , cause atRA levels and LPP still continue to kill the follicles.

And yes ultra low dose of accutane could be good to just regulate the sebum excression and it won't change the liver function regarding vitA , the RA receptors,etc..
But the full treatment dose that we took for acne changed our metabolism/signaling for life guys,so it's still contribute to the hairloss process! A cytopathologist in France confirmed me !

So that Aldh1A1 inhibitor could really help us to slow the process

Sorry for my english

- - - Updated - - -

""Follicular localization sites (including hair follicle stem cells) of several WNT signaling molecules are similar to those of synthesis enzymes of retinoic acid (RA), a vitamin A metabolite."

"Retinoic acid (RA) is essential during embryogenesis and for tissue homeostasis, whereas excess RA is well known as a teratogen. In humans, excess RA is associated with hair loss."

We have that constant RA excess for life guys! we have to regulate it

- - - Updated - - -

I have a biopsie soon to diagnosted active LPP

I will ask them if they can also measure atRA levels. If so they will clearly see that the recent study is right and that the aldh1A1 inhibitor is a solution to ,at least, slow my hairloss and try to save the donor area that I loosing fast
 
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labellavita1985

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Is it possible that using Retin-A (topical tretinoin) can have the same results? Can enough of it be absorbed systemically to cause an overdose of Vitamin A and affect the body negatively in ways Accutane does? My common sense tells me no, it's impossible, but there are many people reporting hair loss coinciding with use of Retin A, topically. Please, if anybody has any thoughts on this, let me know.
 
L

lacaz

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Hello vita, I'm on a LPP/FFA forum, and other women also linked retin A use with their hair loss disease. So yes it's possible

"the article talks about the findings that vitamin A and retinoid products are directly correlated to creating metabolism alteration which they're saying is the reason for lymphocyte inflammation"

http://www.alopeciaworld.com/group/frontal-fibrosing-alopecia/forum/topics/lack-of-studies-for-frontal-fibrosing-alopecia?page=3&commentId=2022678%3AComment%3A1275003&x=1#2022678Comment1275003
 
L

lacaz

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A cytopathologist in France confirmed me that there's really high probability that those high atRA levels is REALLY AGGRAVATING the hair loss and make the Androgenetic Alopecia process happen sooner faster!

we need that aldh1A1 inhbitor , the direct effect showed in the study is lowerng the retinoic acids in our tissues , as this aldh1a1 is responsible of RA enzymes synthetisation.
There's already more than 40 chemical formulations that are selective inhibitor of aldh1a1, we just need one :/ Damn

In France we are several forum members who contacted the association for medications side effects, we hope they will help us to make this chemical compound reality.
But in US, those researchers/dermato maybe already planning to test the molecule on ccca patients, to see if it help like in the mouses study. If some US members could contact them to know what's happening with their discovery , you would be very helpful

We have that altered vitaminA metabolism guys because of accutane, we have to regulate it, the same we fight DHT , to have chance to keep some hair
 
L

lacaz

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You're right on some point macaroni, but it's not my theory, those researchers explained in détails how altered vitA metabolism lead to hair loss.
Everyone is different regarding accutane effect on the metabolism/signaling, some took it, but acne come back, and don't have metabolic changes, others took it just one time and have all the serious side effects. For exemple do your skin react exactly the same now with the sun ? In my case really not and it's been 6years, so I have clearly a change in my vitA metabolism due to accutane, and those changes affect also the follicles, simple as that. the Androgenetic Alopecia can do his job easily lol
Those researchers explained how it accelerate our hair loss. Maybe DHT is still the main factor I know, but if we fight against those atRA levels, we would gain a few years minimum.
In your exemple, you are tripplets , you probably the one who was more predisposed to Androgenetic Alopecia, but without altered vitA metabolism, maybe your Androgenetic Alopecia would began years after no?
when you have a combination Androgenetic Alopecia/CCCA it works in sinergy, so accelerate the whole processus.


And everyone is different regarding the effect of isotretinoin on the RA receptors that synthetise the enzymes , on the liver, ect. even you and your bros
I don't say we only have CCCA of course. But if we have it, it's clearly accelerating the processus of Androgenetic Alopecia, and will affect also all the donor area

To know if it's the case, we just have to do a biopsie, to first see if we have LPP active, and second to measuring the level of atRA. If it's high and aberrant level like it should be the case, it will be the confirmation that we have to take the aldh1a1 inhbitor in our current regimen if we want to save some hair

have a look in details, i can't explain better :

"Altered vitaminA metabolism/signaling in CCCA patients"
Liye Suo, Wilma F. Bergfeld, Natasha Mesinkovska, Helen B. Everts. Poster #665

We don't have access to the whole thing they presented but here one of the study from Liye Suo where he explained in details how altered vitA metabolism lead to hairloss and CCCA. And why inhibit aldh1a1 could be a solution:

https://etd.ohiolink.edu/ap/10?0::NO:10:P10_ETD_SUBID:103145


if the link doesn't work, type this in Google :'The mechanism by which dietary vitamin A regulates skin stem cells during hair cycling'​



Here it's another study linked vitaminA metabolism and CA,PCA,CCCA,etc: http://www.nature.com/jid/journal/v1...d2012393a.html


And this one is a study showing how inhibiting aldh1a1 would decrease our all trans retinoic acids concentrations in the scalp:

http://www.nature.com/jid/journal/v1...d2012393a.html
​
 
M

mustam

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With all the things said here. Is there any way to prevent hair loss from accutane? I finished accutane last autumn and experienced hair loss when i stoped it. Have been losing hair since then pretty much. Its not that bad, but im getting worried this might continue.
Do you think minoxidil or propecia might work?
 
stressftw

stressftw

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thats something to discuss about

and about women?

alot of women take accutane too and i saw alot of women losing hair due to accutane but i never saw a single case of women going bald after taking accutane or some evidence of CCA alopecia after accutane

actually hairloss is accutane effect that alot of people experience but the hair grow back again
there is alot of women today that took accutane everyday for years to fight due the anti-aging effect and i never see someone complaining about CCA alopecia yet
maybe accutane can speeds male pattern baldness that is more likely but i rly dont believe in CCA alopecia caused by accutane

and i already saw a guy in a acne forum that was taking accutane in high doses FOR hair loss but i dont remember his condition he was diffuse and his hair regrow full
and remember isotretinoin was a chemoterapy drug that was previously used for certain types of cancer like every chemo drug it HAS effect killing cells and it cause hairloss
accutane can cause hairloss in different ways like tellogen effluvium too but it seems to be temporary and reversible
i really dont believe that accutane can lead bald but this article is something to discuss about
 
G

Gunnersup

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justlookingforanswers said:
i did tske accutane two years ago and ever since then i’ve had aggressive diffuse hairloss. what have you tried that didn’t work? i just started finasteride
Click to expand...
I've tried Otezla, tofacitinib, doxycycline, and oral minoxidil. Nothing except oral minoxidil has helped. I haven't tried finasteride yet. Is your scalp itchy as well?
 
J

justlookingforanswers

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Gunnersup said:
I've tried Otezla, tofacitinib, doxycycline, and oral minoxidil. Nothing except oral minoxidil has helped. I haven't tried finasteride yet. Is your scalp itchy as well?
Click to expand...
yes it is itchy from the dryness that accutane caused, it was never itchy before getting on accutane
 
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