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Hey everyone,
Just another update... the massive hair shedding that resulted after three days on an oral steroid that was perscribed to me to treat my (incedibly) sore throat during a bout of mononucleosis has somewhat abated (see my last post for more info).... i'm still shedding more than I did beforehand but it seems to be going back down to where it was before....not that this is any reason to celebrate because I was still losing a bunch of hair every day in the first place from the accutane....
Still religiously popping the propecia, biotin, b-complex and am slapping on the rogaine...
March 20 with be six months since I stopped accutane...I understand that many of you have had this problem for up to (and in some cases, more than) a year now and that recovery can take that long, so i'm not despairing quite yet. My hair is depressingly thin though and it's becoming much more difficult to hide the almost bald spot I have on top.
Also, just for reference lammarr i'm a male (you referred to me as a "she" in one of your posts) haha... its cool though, I don't think I've specified my gender until this point anyway.
Here's the interesting news I have to report... I decided to make an effort to try and get some more info about this problem (accutane induced hair loss) since everybody's dermatologist seems to be at a loss about it. I sent emails to the American Hair Loss Association, Roche Pharmaceuticals (yeah, I don't expect much from the drug company but its worth a shot) and "Balding Blog" which is another website where a lot of people have posted their problems with accutane and dermatologists have given some (limited) info. I basically asked if any information, statistics, etc were available about this issue and if they had any information about doctors who have some experience treating this problem. I also mentioned the alopecia areata theory and provided links to this forum. Who knows, maybe we'll get a guest appearance from somebody important in the "hair loss treatment community" lol... anyway, I'll relay whatever information I get on here.
With that said, I think it wouldn't be a bad idea for the rest of you to start getting in touch with some of these kinds of organizations (rather than just dermatologists). If the American Hair Loss Association gets bombarded with requests for information about accutane hair loss then they're going to be a lot more likely to spend some time looking into the problem. One of the dermatologists I've visited said that a study would have to be conducted to determine why our hair is falling out and how to best treat it, and for that to happen there needs to be more awareness about the problem. So I would suggest that if you're losing or have lost hair from accutane, get in touch with some of the interest groups and organizations out there. Even harassing the drug company might be helpful...
The (prompt) response Roche Pharmaceuticals gave me to my questions:
"Thank you for the opportunity to respond to your inquiry about
ACCUTANE (isotretinoin). Although, as you mentioned, alopecia (which
in some cases persists)
and hair abnormalities and has been reported with Accutane use; I regret
to hear that you are experiencing hair loss.
As a pharmaceutical manufacturer, we may assist in educating you about
our products based on the FDA-approved package insert which is provided
in the link below. I was not able to locate any information in the
package insert as the mechanism of action for the side effect, hair
loss. I understand that you have had consult with your physician,
however, we must refer you to the healthcare provider for further
assistance. I am sorry that Roche cannot provide any treatment
recommendations, including treatment for side effects.
As per our protocol, I have also shared your information with my
colleagues in Roche's Drug Safety department. They may contact you, if
more information is needed.
Again, I regret that I cannot respond specifically to your inquiry. I
trust that further discussion with the physician who is experiencing in
treating patients with Accutane may be able to assist you further. We
wish you the best of health."
LOL that wasn't totally predictable at all....
I used Rogaine for a couple months but I stopped because of the constant shedding with no solid improvements. Im shedding less these days (20-30) but not sure if it was the due to steriods, vitamin supplements or my body fixing itself. Currently Im just using Nioxin shampoo and Skin, Hair & Nail vitamins and even though I shed its way better than loosing 50-100 hairs I was once loosing in a single day.
This thread is hyoooowge.
For anybody that has followed it from the start, has this question been properly answered:
Is MPB a process of time or hair cycles?
Because, obviously, time and hair cycles are two totally different things.
I have been put in a situation where I've had to choose between acne and no thinning hair or clear skin and thinning hair with accutane. As I'd imagine a whole bunch have in this thread. I'm talking about serious thinning hair, so it's see through when it wasn't before.
My acne is not severe, it's borderline accutane. But it does scar. And: all antibiotics fog my brain. They do work for me skin wise but the brain fog is just too much. When I come off them it's like landing back on the planet again. Such a difference in clarity of all senses.
I'm taking a very small dose of accutane: 10mg every other day. This keeps my skin clear and makes my head tingle 80% of the time.....loosing hair........constantly.......
I have my head buzzed on no1 and I like it like that but I'd rather not be loosing hair. But knowing it's all going to come back I'd be far less bothered. I doubt it will though. The loss is all over, diffuse thinning, but the classic MPB areas are effected considerably more. I'm currently of the belief that if you get loss in the MPB shape......it's hair you're not getting back. As I don't believe accutane is selective in the places it knocks hair out of your head. It's just those with the MPB gene don't get full recovery in the MPB area.
I've been on 10mg every other day for three months and probably lost half the weight of my hair on top. Zero exaggeration. Accutane is a serious hair thinner. Hair thinning ought to be in bold on the leaflet, right at the top. A quick search on the net, as I'm sure most of you will know, will turn up loads of forums, with loads of threads, and loads of posts just about accutane + hair loss.
One point that I saw mentioned....how loosing your hair puts things into perspective. My experience of the perspective shift: Dodgy skin, occasionally scarring, antibiotics causing brain fog (have had a ten year stretch on them at one point), BP cream considerably effective but massively impractical (bleach everything, pain in the ass) and still needs oral antibiotic backup - Take accutane. Start losing hair like crazy. Perspective shift: Suddenly my hair is the most important thing, stop taking accutane. Skin returns to normal after anywhere between a few months to six months (ultra low dose of accutane for a shortish period doesn't give remission). Hair shedding stopped but skin problems come again. Perspective shift: my skin is the most important. Scars are for life, zero effective treatments (only cutting them out), what do you want...clear skin, zero active acne, no continued scarring and big hair loss OR no hair loss and dodgy skin? You look at guys with perfect skin who are bald and you think....I'd totally be fine with that!
I take accutane again, start loosing hair again, and the perspective shift kicks in again.
I must say, my scarring isn't severe by any means. But the effect accutane has on my hair is. And I don't think I'll get back what I lose. I haven't yet. My next move is quitting accutane after this three months is up (few days away) and trying to find an antibiotic that doesn't fog my brain and works on my skin. (been on 90% of them though).
Acne and hair loss = fantastic.
MPB is a process of time, e.g. at a certain age you will begin balding, it is pre determined.
Have you tried b5 for your acne?
MPB is not purely a process of time though is it? I think, as you say, the time it kicks in is predetermined (although I believe this could be brought forward by 6 years by taking accutane (time from a new hair starting to grow to fall out, accutane just knocking it straight out when you take it)).
I'm thinking hair cycles are the main thing. What would show they weren't is: somebody taking accutane, getting hair loss in the male pattern baldness pattern, stopping taking accutane, having full recovery in the MPB area, yet then going on to slowly loose hair to MPB naturally.
I guess the chance of somebody posting that story to the net is slim to none. Especially due to the length of the entire process.
I can't imagine it not being a process of hair cycles. Because those hairs are supposed to last in your head for about 6 years. And when you knock them straight out with accutane, shorter and thinner ones take their place; classic, none reversible, MPB.
I haven't ever tried B5, does it have good reviews?
MPB is a process of time, e.g. at a certain age you will begin balding, it is pre determined.
Have you tried b5 for your acne?
MPB is not purely a process of time though is it? I think, as you say, the time it kicks in is predetermined (although I believe this could be brought forward by 6 years by taking accutane (time from a new hair starting to grow to fall out, accutane just knocking it straight out when you take it)).
I'm thinking hair cycles are the main thing. What would show they weren't is: somebody taking accutane, getting hair loss in the male pattern baldness pattern, stopping taking accutane, having full recovery in the MPB area, yet then going on to slowly loose hair to MPB naturally.
I guess the chance of somebody posting that story to the net is slim to none. Especially due to the length of the entire process.
I can't imagine it not being a process of hair cycles. Because those hairs are supposed to last in your head for about 6 years. And when you knock them straight out with accutane, shorter and thinner ones take their place; classic, none reversible, MPB.
I haven't ever tried B5, does it have good reviews?
Trust me MPB is pretty much purely a process of time, diet etc could alter it if you have a bad lifestyle. You could have cemotherapy 20 times, loose all of your hair everytime and unless you already had pre excisting hairloss it won't make a damn difference.
I could sit here and go into great detail but i will keep it simple. With mpb androgen receptors and the upper vascular structure of the hair follicle play a role. At a point in time in ones life this part of the hair follicle begins to be recignised as a foreign object. The number of androgen receptors on the hairfollicles and the sensitivity of them to DHT is what causes the hair to be attacked by the immune system.
What im trying to say is, that unless this underlying process has already begun, then it doesn't matter how often your hair sheds, it does not bring you any closer to initiating the process of MPB
The reason why tane related hairloss looks like MPB is pretty simple, the areas that are involved in mpb have a high affinity to androgens, androgens aren't friendly in terms of hair regrowth, the higher the estrogen around the hairfollicles the greater their capacitity to regenerate.
This tane hairloss is pretty complex and i can assure you it is totaly unrelated to MPB. People have regrown FULL heads of hair ten years down the line, not that it didn't need assistance to do that e.g. high concentrations of minoxidil and avodart. But as you will know the follciles in mpb after 3 years can (and some do) get to the stage were they cannot produce terminal hairs, so as you will see people who regrow all their hair from tane hairloss would not be able to do this if that was the case, i personally have regrown alot of hair on my temples and my shedding still persists all over most of my entire body....
So the key point im trying to make here is that unless the hairfollcile itself has undergone Fibrosis (as seen in mpb), the hair is still capabale of producing terminal hairs, but the underlying cause first has to be stopped.
I used to think the same as you but take a look at alopecia areata to give you an idea of what is going on, we have the diffuse form.
Edit: damn spelling mistakes
Damn, I just took 3 soft capsules fish oil early in the night. Will that make a big difference as in causing more hair loss?
Can someone please tell me what food, veg and fruits that I should not consume in order to get accutane out of my system as soon as possible?
If you gonna take vitamin supplements you might as well take some:
Biotin
Hair, Skin & Nails
or Grape Seed Extract
I remember taking Fish Oil and it was during the time I was loosing A LOT! Not sure if its any way related to hair loss.
I think if you have the mpb gene and then you take accutane. This will jump start your mpb at a much earlier age.
For example my dad didn't start to loose his hair from mpb till age of 30 then by 40 his bald on the crown.
I took acutane when i was 22. Now I'm almost 24 and my hair is thin and u can see through my scalp. So I'll be bald by the time im 30 thats 10 years shorter than my dad.
I guess only cure for me is Propecia but that drugs has some side effects too 
I'm not sure I buy the idea that accutane can jump start MPB... I don't have any of that in my family (uncles on mom's side and my Dad along with his brothers all had full heads of hair through their 30's and most of their 40's). I am losing my hair in the MPB regions and have a very thin, almost bald spot on the crown. But I've also been on propecia for almost six months now as well as rogaine for about three months and havent noticed any slowing of the hairloss or regrowth. I suppose that propecia could be considered a preventative measure in that it will (hopefully) ensure that any regrowth isn't affected by MPB, but I think its just a matter of waiting for the hairloss to finally stop and your body to get back to normal after taking the drug.
I think that lamarr's idea that its a form of diffuse alopecia areata has merit (especially if it seems that the topical steroids and ketalog shots are slowing things down). I got my derm to give me some samples of luxiq foam which I'm supposed to try for two weeks- i'm going to give it a try in about another month here.
One thing that I've definately noticed with my hairloss is that it increases when i'm stressed somehow- very much like is consistant with classic tellogen effluvium. For example, I just got over mononucleosis which is a pretty serious illness and my hair has been falling out like crazy since (when it seemed beforehand like it might have been slowing down a bit).
Although I don't notice any regrowth at all, I feel like there must be at least some because considering how much hair i've lost I think I'd be bald by now. If the average head has 100,000 hairs and you're losing about 200 a day (conservative estimate for many), then thats 73,000 hairs gone in a year. If there isn't any regrowth then that means almost 75% of your hair is gone after a year of dealing with this shit. Moreover I notice that some of the hairs I lose are very very thin, which indicates to me that they're the baby hairs that first grow back.
My problem is of course that the hairloss seems to just be concentrated in these classic MPB regions, so i'm going to end up having a bald spot on top of my head soon.
On a side note, I do wonder if taking propecia and using rogaine have actually prolonged the hairloss in any way. I have read some reports (on baldingblog.com for example) of people who say they took propecia as a preventative measure (because of family members with MPB) and say it caused them to start losing hair. If that is the case then I have yet another good reason to sue my original dermatologist (the one who told me to ignore the accutane hair loss because he assured me it would stop within 6 weeks of stopping the drug) because he told me (without a doubt of course) that I had MPB and put me on propecia haha.
Phan, has your hair been constantly falling out during that time or have you just been noticing a gradual thinning of the hair?
I have explain to people why the MPB regions are harder hit than other regions with this, and it is also the reason why women seem to recover better than men, or if they do have on going tane hairloss MOST of them don't loose hair in mpb regions.
It is simple really the hairs in MPB, weather you were going to suffer MPB or not, are more sensitive to androgens and have more androgen receptors, therefore they attract more androgens. Estrogen is what hair needs to grow strongly where there is inflamation present and obviously androgens do the oposite on the head....
I use olux (equivalent of) on my hairline coupled with minox on the hairline (half dose) and i am slowly re growing my hairline. My hair is thicker than it has been since this shit began. So overall altho my hairloss hasn't stopped it is doing ALOT better.
good luck guys.
well unfortunately my hair loss still persists, but I've decided that basically that I'm done with it. In the near future I will either shave my head or just get a hairpiece. The problem is that although it is some sort of auto-immune function in persistant accutane hair loss there is not a cure, and it is rarely fully reversible. When the hair loss goes on for an extended period of time the best thing you can hope for really is that it will slow down or hopefully eventually stop. In terms of regrowth, it depends, but I also feel that some of the hair loss may be scarring in others it isnt. Anyway, the problem is this thing isn't going to reverse itself anytime soon, and my hair isn't magically going to come back one day. The main problem is not even so much the loss itself but the fact that my hair is just a complete mess, it can't even be styled anymore etc, and going into the business world I can't have it like that. So it is what it is, but here is my two cents before I'm outta here. First off, I'm still hearing the whole don't eat foods high in vitamin a because it will cause hair loss etc, i can assure you once you're off the drug for at the very most 3-4 months you don't have to worry about it anymore. Lastly, this whole thing is auto-immune, you could simply call it diffuse aa but there's a lot more to it in my opinion. Not only do I have hair loss, i've lost body hair along with eyebrow and eyelash hair, and also get severe itching on my skin whenever my body experiences a change in temperature, ie if I go from outside to inside etc. Also I have a slight form of some rosacea symptoms on my face etc. The whole thing is just very strange, but the worst part is there's nothing anyone can do to help it. I simply could just say I'll wait it out, but I'm 22 I don't want to waste 5 years of my life away right now. If I can have hair during my 20s I can live with that.
lamarr, do you think that you could write to us exactly what your daily routine is for this stuff? Like what all are you taking/applying each day, in what amounts, etc? How long have you been using the Olux for (I took a look and on their website they say not to use it for more than about two weeks)? Also, has your hair loss been especially bad in the MPB regions as well? And any luck on putting some pictures up?
Also, these are just some questions for the general public if anybody has answers or has spoken to an expert about.
1) What is the best non-retinoid treatment for acne? Antibiotics? Having taken accutane and lost my hair (but not my acne), i'm skeptical about using differin or other retinoid topicals...
2) Has anyone done research or inquired more about the role of estrogen in promoting hair growth? I'm curious to know if perhaps the use of topical estrogens would be helpful in this. It seems for the most part that females almost always recover from accutane-induced hair loss while that isn't always the case for men, so obviously there is a hormonal component to it all. I wonder if accutane interferes with hormones at all? There are other side effects of accutane which might be indicative of estrogen disruption (I believe some users reported increased facial and body hair, for example). This could also explain why propecia doesn't work, because propecia only blocks DHT which is associated with testosterone (and not estrogen). Of course, if the use of estrogen supplements or topicals in men is a possible treatment to the hair loss, you'd have to be really careful because screwing with your hormones is a real bad idea... getting your hair back but also growing breasts would suck haha. But I wonder if it might be worth visiting an endocrinologist to get my hormones tested and see if there are any imbalances or abnormalities.
Ithappens you have very similar side effects as me but your rosacea doesn't sound as bad as mine. There are ways to treat most things other than joint pain...The hairloss is a diffuse form of aa and it can be stopped and i also have TONNES of regrowth, my hair is about 70% of its original value now, which is fine by me, my temples are improving week by week which is also fine by me.
Ithappens, how can you say there are no answers when i am having a response like this? My body hair also falls including my eyebrows and lashes, my lashes have recently stopped though which is cool.
About avoiding the vitamin A, trust me it helps ME. Read the accutane action forum the have many scientific studies on the damage retinoids do.
My shedding has reduced almost to normal over the last few days, i upped my steroid strength about 3 weeks ago and im doing great now. I loose about 50 (including the shower) hairs a day, which is fking wonderfull conpared to 300....
Isn't it strange how the two people who have been using steroids long term are doing much better? why do you think blazed isn't around as much?
For my hair i apply the olux foam (called something different here but ill use your brand names) only to my temples (twice per day 5 days out of 7), so i use very little of that, i have 100grams every two months of the foam. I apply olux scalp solution to my entire head (other than temples) once per day in the evening, Followed by emu oil believe it or not, i know without a doubt it makes my hair regrow like mad.
I also apply half doses of minox to my temples twice per day after the olux foam, might sound like alot but doesn't take hardly any time...
I can actually run my hands through my hair many times (even when i haven't washed it ina few days) and not get any hair, which is amazing.
If i have to relly on these things to keep my hair the so be it.
If you do a google search for clobetasol propinate foam study in alopecia areata. You will see a safety study on it's continual usage. My derm told me it is fine to use the scalp application continuesly but to go easy with the foam e.g. take a few days break from time to time....
Anyway, i am SLOWLY but surely improving in every aspect of my side effects, but i have had to put the effort in and not give up, things can be done, but trying your standard minoxidil and propecia only won't work very well. If you hadn't read a number of people dealing with this hairloss use minoxidil and it does reduce shedding, guess what? it does the exact same thing in AA, they use it to reduce fallout after a round of steroids had been used.
Anyway if you want to accept your hairloss and let it be then that's fine, but i'm telling you now there are more answers to the hairloss than you think, it takes ALOT of research and digging though.
I will post pictures soon i promise, someone remind me again in a few days if i havent by then!!
Thanks for answering my questions lamarr and i'm glad to hear this seems to be working for you! Could you clarify a few details for me though?
What strength of the olux do you use?
Half strength minoxodil - you mean 2% rather than 5%?
Also, how long after applying the steroid do you wait before applying the minoxodil?
Do you use pure emu oil or some kind of shampoo/conditioner/etc with emu oil added?
I wasn't able to find the olux "scalp solution" you mentioned (probably because its a UK thing). What specific brand are you using over there so I can look for a US equivalent?
how long have you been using this routine for?
how long after you started this routine did you notice significant reduction of hair loss?
how long after starting this routine did you notice hair regrowth?
Have you noticed any random side effects from this routine?
Refresh my memory- did you get the dermal ketalog shots too? if so, are you supposed to be getting them regularly or was it just a one time thing for you?
And lastly (if you dont mind) how much do you weigh?
Sorry to inundate you with questions but as you might imagine i'm interested in hearing from anyone who is having success in dealing with this BS. Thanks again for your help.
Thanks for answering my questions lamarr and i'm glad to hear this seems to be working for you! Could you clarify a few details for me though?
What strength of the olux do you use?
Half strength minoxodil - you mean 2% rather than 5%?
Also, how long after applying the steroid do you wait before applying the minoxodil?
Do you use pure emu oil or some kind of shampoo/conditioner/etc with emu oil added?
I wasn't able to find the olux "scalp solution" you mentioned (probably because its a UK thing). What specific brand are you using over there so I can look for a US equivalent?
how long have you been using this routine for?
how long after you started this routine did you notice significant reduction of hair loss?
how long after starting this routine did you notice hair regrowth?
Have you noticed any random side effects from this routine?
Refresh my memory- did you get the dermal ketalog shots too? if so, are you supposed to be getting them regularly or was it just a one time thing for you?
And lastly (if you dont mind) how much do you weigh?
Sorry to inundate you with questions but as you might imagine i'm interested in hearing from anyone who is having success in dealing with this BS. Thanks again for your help.
I don't know what you mean by what strength olux, as i said i was speaking in american language i use dermovate cutanious foam (equivalent to olux) and dermovate scalp solution. The active ingriedient is clobetasol propionate 0.05%. I presume the foam is the same strength, the difference between the two is that the foam penetrates deeper....
I use half dose minoxidil, that is i use half the amount recommended, i use the 5% solution though.
I have been using topical steroids only (not kenalog shots) for about 3 months now...it takes about 5 days to notice a reduction in shedding. I wait 30 mins ideally before applying the minoxidil, the litrature for alopecia areata suggests the same, as the vasocontriction of the cappilaries due to the steroids actually makes the minoxidil more effective.
Regrowth is hard to gauge, but i have always had constant regrowth, the steroids i would say are better at reducing shedding, not initiating regrowth. However after about two weeks of applying the emu once day i notice a considerable amount of regrowth.
I have actually been using the emu (on and off) since a few months after this started and have always noticed the same thing, so i know without a doubt it causes significant regrowth for me... I hear you ask why didn't i use it constantly? well firstly i wanted derms to take my hairloss seriously, and secondly it does give the hair a very greasy look, so now i just apply it once before bed (shortly after the steroid application of the entire scalp) and then wash it out in the morning.
I have had 0 side effects. I weight about 85 kgs (190 lbs roughly) and im 6 ft 2 tall, i carry alot of muscle as i still work out occasionally and used to be a gym nut, i weighed 95kg when i started tane...
My bretheren! I am excited to see i am not alone in my despair!!! I came online to find answers, and luckily I found this.
well, a little backround on my situation..
I am 18 years old, 120 pounds, was on accutane for 5 months on 60mg a day, and just popped my last pill. My hair has been shedding insane amounts the last month of my treatment, and by the sounds of it it wont be stopping any time soon.... it is a diffuse pattern that particularly effects my frontal hairline... great... and it gets worse every day.. at least 40 hairs.. at least...
see the problem is that i have long lustrous hair that the ladies love, and i can't go having it dissapear on me! My hair makes me! i am sure some of you can relate! and i am only 18! this isnt supposed to be happening!
My grievance is that my derm just casually handed me the drug like it was tylenol or something. I was not aware of any hairloss or other major side effects. i hadn't the clue! There are clearly elements of this drug that have not fully been exposed by doctors and i think it is a shame, especially when guys with great hair like us have to trade one stigma of intense acne for a similar stigma of tarnised vanity!!!
well anyways, do any of you scholarly gentlemen have any advice for me? any thing i can take or do? from what ive read so far i believe that some of you have really done your research , and on the behalf of all us lost hairloss sufferers out there, THANKYOU. hopefully i can get the real facts here.
Daniel, as tough as it may sound i would recommend you just wait it out for the moment, people often recover within the first 5-6 months after tane, you could even recover over the next few weeks if your lucky, 40 hairs doesn't sound to extreme....Asi said though just wait it out for the moment, things won't end up anywhere near as bad as your thinking they will...
Just to give an update. Im shedding even less than before which is such good news for me. I lost a lot of hair but was never in MPB pattern. My current regimen is Nutrilite Hair, Skin & Nails (doesn't contain any Vit A), Grape Seed Extract 300mg, and Nioxin 5. Hope you guys all recover from this.
Blazed can i just point out to people you were getting kenalog shots and the hairloss died down atleast 6 weeks after your last one. Which again fits with AA, it takes atleast 6 weeks for kenalog to kick in...
How long have you been on the grape seed blazed? there is a reason why that helps in tane hairloss.... i won't go into the science but it can help things...