I got on propecia as soon as I noticed the hair loss. I took it for 6 months but it didn't really change anything and I was still shedding like crazy. Last spring I started using rogaine and used it till about November but that didn't help, I think it actually made it worse. From reading the posts on here and other message boards it just seems like there is a very small chance that the hair will grow back on its own. The surgery is expensive but I would gladly pay to repair the damage and stop stressing about the hair not growing back. I have searched every message board relating to both accutane hair loss and hair transplants and I couldn't find any examples of people who got a hair transplant after losing hair from accutane. All the messages from people 5,10,15 years later who never grow hair back are making me seriously consider getting the surgery.

I know how you feel bro....I was that if not more desperate at one point until I found this forum and a few others.I know I'm making it sound bad but the reality is our hairloss is not naturally caused....The drug is basically screwing around with our system and I think your making a BIG gamble by getting a transplant.

In the end its all up to you but let me ask you this, what would you do if it failed?I use to think that it wouldn't happen to me and alot of these people are wackos Look where I turned out.....So please reconsider.

Hey everyone, I'm new to the forums and really appreciate all the information everyone has posted. I wish I had the time to read through all 117 pages of this thread, so I apologize if I'm asking the same questions as someone else.

I'm 24, and have been on 40mg/day for about 6 weeks now I've always had rediculously oily skin and hair my whole life, which I've hated with a passion. Since being on Accutane my hair become pretty dry and fine, which I'm not used to at all. I've never really thought to look at whether or not any hair was on my hands when I shampoo/condition in the shower, but after starting accutane I've become extremely paranoid about it.

I'm curious how much hair loss you guys are experiencing when shampooing. I've noticed a lot of posts mentioning extreme shedding, etc. and I'd love to guage to what degree that is. I'd say that I notice about 5-10 hairs fall out every day when I shampoo/condition. It has been pretty consistent with that, and I keep contemplating whether or not I should drop down to 20mg/day to prevent any further side effects.

I don't have any scalp dryness or itchiness and I haven't noticed any hair loss anywhere else on my body. Every male in my family has a full head of hair, so MPB shouldn't be an issue genetically.

Another thing is that I've always had pretty short hair and I've recently grown my hair out pretty long, so I'm wondeirng if the hair loss is just more noticeable because of the length of the hairs. I've asked numerous people and I keep hearing that losing 5-10 hairs in the shower every day is pretty normal.

I'm not sure if I'm being overly paranoid or legitimately concerned with this. I've always been pretty big on my hair, and I'd really hate to do prolonged damage to it. Does hair loss occur much at lower doses like 10-20mg/day or is it typically in the 40+mg/day range?

Thanks.

I will continue with the steroid shots and hope it improve or helps me hang on to some hair, but if it gets really bad I will have to pursue another option.

 

 

I feel that there is a need for me to warn you regarding steriod injection. Steriod injection can thin out your scalp and make things worse so I feel that you should reconsider if you should continues this option. If you really want to (even though I don't agree with it) then maybe you would like to try out what lamarr has been doing, which is applying topical steriod solution once daily.

 

 

 

Max whats wrong with what lamaar is doing?I understand there are certain risk and dangers associated with steroid injections but what about the cream?

 

I would think that this is a future option for me considering its working for lamaar.I don't know about your friend but the reality of losing all my head and eyebrow hair is very real so I will have to look into that.

 

Edit-Just read some stuff on steroids.I got to agree with max, steroids is not to be a long term solution unless you know the full risk associated with its use considering it could turn out like another blessing in disguise(accutane).

 

Jp-How bad is the itching that you are descrbing?

 

OK, so I tried to do a little research on both diffuse AA and steroids as well. What I found was yes, steroid treatments do work for AA, and yes there are side effects. Sometimes a course of steroids will cure it, sometimes it comes right back. The fact that sometimes it will simply cure itself with a little time leads me to believe that it only helps by turning off the auto immune response during use, not permanently. Since our form of diffuse AA is undoubtedly chronic, we would have to continue steroid treatment essentially for life. This, as has been discussed, is where the problem lies. These steroids can certainly cause very undesirable side effects in the long run, so to many they are not an option. For me, the outlook of being completely bald eventually is a reality, having a bit of mpb in my family, but going bald prematurely due to tane is also a reality. My issue is weather I want to just accept inevitability, or fight. The risk with fighting is that what would be a good looking bare scalp, and a decent look for me, could get thinned out and have spider like veins running through it.

Of course for me Hair>bald look>mangy dilapidated scalp. So, what to do?

I don't know. I haven't the time to read meticulously through every post on this board or others, so maybe it has already been discussed, but what about some sort of pulsed combination therapy. I came across a book which covers AA, and also recognizes Diffuse AA as one of the forms. It gives a fairly thorough rundown of treatment options, and in a blurb about combining minox with prednisone, it mentions that minox helped to retain regrowth after steroid therapy. This conclusion might be a no brainer, but couldn't this help us? What if a steroid was used for say 3-4 months out of a year, then while off the steroids, our normal regimen would help retain the growth? Perhaps a different regimen for increased benefits while in the growth stage vs the retaining stage. Just brainstorming here.

I would be very interested in all of your input. I am convinced now that diffuse AA is what accutane got me, and am ready to launch a strategically planned counterstrike.

JP

This is the last time i am going to say this, because people seem to think they know better and i get fed up repeating myself.

Once daily application of a topical steroid, is PERFECTLY safe in the long term.

I see the best dermatologist in europe and he assures me he has aa patients who have used topical steroids for decades. NO problems.

I have also said combining steroids and minoxidil is a great idea. Minox works for me but messed with my accutane induced rosacea so i had to drop it.

I have been using the steroids for over a year and i have no visible damage to my scalp. People listen to anecdotal reports on forums to much. The skin thinning occurs from injections yes. But once daily application will not lead to visible damage. i can assure you of that. Yes if applied to places liek the arm it will do damage in the long run, but the scalp is much thicker and has no moving parts like in a joint area.

I use essential oils, laser therapy (which by the way GARUNTEES i will get no skin atrophy) and topical steroids.

My hair is doing great, although i still shed alot more than i used to. The condition is chronic in nature which we need to remember.

Stop listening to people who have no clue about the use of topical steroids on the scalp. My derm is the ideal person to ask and he keeps reassuring me. Guess what? he has been right with every recommendation thus far and i will continue to keep my hair and use the steroids.

Just want to say this once more, the only person who has reported skin thinning of the scalp from steroids was having injections done. My derm wouldn't perform injections on me for this reason, he said atrophy was a real risk with the injections so he doesn't do them.

This is the last time i am going to say this, because people seem to think they know better and i get fed up repeating myself.

 

Once daily application of a topical steroid, is PERFECTLY safe in the long term.

 

I see the best dermatologist in europe and he assures me he has aa patients who have used topical steroids for decades. NO problems.

 

I have also said combining steroids and minoxidil is a great idea. Minox works for me but messed with my accutane induced rosacea so i had to drop it.

 

I have been using the steroids for over a year and i have no visible damage to my scalp. People listen to anecdotal reports on forums to much. The skin thinning occurs from injections yes. But once daily application will not lead to visible damage. i can assure you of that. Yes if applied to places liek the arm it will do damage in the long run, but the scalp is much thicker and has no moving parts like in a joint area.

 

I use essential oils, laser therapy (which by the way GARUNTEES i will get no skin atrophy) and topical steroids.

 

My hair is doing great, although i still shed alot more than i used to. The condition is chronic in nature which we need to remember.

 

Stop listening to people who have no clue about the use of topical steroids on the scalp. My derm is the ideal person to ask and he keeps reassuring me. Guess what? he has been right with every recommendation thus far and i will continue to keep my hair and use the steroids.

 

Just want to say this once more, the only person who has reported skin thinning of the scalp from steroids was having injections done. My derm wouldn't perform injections on me for this reason, he said atrophy was a real risk with the injections so he doesn't do them.

Thanks lamarr,

My mom is a doctor, but she is no derm and is being very hesitant about the idea of me going on topicals for an extended period of time. She understands that the scalp is thick, and absorbs less, and is thus less susceptible to atrophy, but she is very concerned that the topical will unintentionally end up on my face skin, which is very susceptible. How do you deal with this issue? Any tips? Also, from your experiences do you think after 10 years I have a chance of any regrowth with the use of steroids. I have almost completely given up on my hairline, but my entire top is getting very thin, and I was hoping to thicken it up. I am convinced this is diffuse AA, I have the classic exclamation point hairs, and the same pattern as you all seem to exhibit. Actually, my parents when looking at my hairs in a magnifying glass, where trying to convince me this was just in my head. Then, when examining the hairs my dad said, where am I looking, the small end? I simply smiled. Anyway, I was also wondering how the lasers guarantee no atrophy? I have been using taking grape seed extract 600mg a day for about a week, and am going to try your essential oil concoction. By the way, I think I may have read a post of yours on another forum where the idea of carnitine-l-tartrate was proposed, has this yielded any results. I ordered the activ-m shampoo to give it a try. I will report any improvements I see, but have kinda started a whole new regimen, so what exactly is working will be hard to pin down.

JP

The lasers garuntee no atrophy as they stimulate fibroblast production (keeps collagen levels high). And also keeps all the metabolic functions going at normal or above normal pace. Steroids reduce metabolic function which is how they thin the skin.

I haven't had a problem with getting steroids else where on my face. Are you still shedding more than normal in the areas you are losing hair? If so all the things i do will also help you in the same way...

I don't believe i saw much in the way of results from the carnitine tartrate btw.

Mark

The lasers garuntee no atrophy as they stimulate fibroblast production (keeps collagen levels high). And also keeps all the metabolic functions going at normal or above normal pace. Steroids reduce metabolic function which is how they thin the skin.

 

I haven't had a problem with getting steroids else where on my face. Are you still shedding more than normal in the areas you are losing hair? If so all the things i do will also help you in the same way...

 

 

I don't believe i saw much in the way of results from the carnitine tartrate btw.

 

Mark

Thanks again lamarr,

I am currently shedding 100+ a day from all over my head, but mainly the top. I would say it has varied over the last several years between 50 and 200+. It had to be well over 200 in the first few years post tane though. Seems to coincide with stress also. I also notice that most of the shad hairs (75%) seem to be miniaturized and shorter than the rest of my hair, and as I said earlier, about 25% exhibit clear exclamation pointing. Also, every one of my hairs seems to lack pigment in the proximal shaft, which is interesting. I don't know if any of this means anything, but it all seems to be related. I could probably benefit from seeing a qualified derm and maybe getting a scalp biopsy, but I have no idea who would have experience with tane sides in my area. This might be my next thing to research.

JP

im about 2 months in to the shedding after stopping accutane. it seems to be getting worse. my derm keeps saying every case shes seen has reversed and not to worry, but im really worried!! is this true, do most cases actually reverse?

Hi all,

Just an update. So my shedding still continues. Some days I only see like 5 hairs on my pillow in the morning, other times 10. Sometimes I lose only 10 hairs when I apply Rogaine/emu/grapeseed to my scalp, other times 20+...even when I'm being extremely gentle. It's really frustrating because just when I feel like I might be turning a corner, the shedding picks up again.

I am now approaching the one-month mark since stopping Accutane; one more day and I'll be at that point. I know it can take up to two months for the stuff to leave your system, so I'm still holding out hope this is just a short bout of TE and things will recover soon...especially since I only took 'tane for one month total. I don't have any intense itching or inflammation...just some dry scalp issues (flakes, minor irritation, etc.). I do get random tingly feelings on my scalp every now and again during the day, so I'm not exactly sure what that is. I have noticed, however, that those tinglies seem to have moved more to the back of my head and my sides, as opposed to the top of my scalp (which is where I felt it the most when the shedding began). As for other sides...my lips are normal now, my eyes are still slowly getting there, and I'm hoping my scalp will recover as well.

It's hard to see the light at the end of the tunnel, but for now I just keep telling myself that this shedding will stop soon and my hair will re-grow...I just have to be patient. For now, I continue to buzz my hair with clippers every week or so to minimize the thinning, especially on top.

I've cut out the extra Vit. E along with the flaxseed, as I feel that may have been having a bad effect as well. I'm getting the B-to-zinc multivitamin in a few days, so I'll start that soon. I've also added a turmeric/ginger/peppermint extract that is said to boost detoxification enzymes within the body.

Stay positive, y'all!

Hey everyone -

I've posted a few times but just to update everyone, I'm 23 and took 40mg for less than 3 weeks and stopped after I noticed excessive hair shedding. That was 4 months ago to the day. After I stopped accutane I got intense scalp inflammation and itching/burning spells all over my body which still persist. I've used jojoba oil on my scalp and taken grapeseed extract but haven't really seen any results. I had a brief regrowth period about 2.5 months after I stopped accutane but the shedding never stopped so my hair is getting bad again. Also, I shed hair from all over my body, I'm pretty hairy so I can't notice it but 3 days after I wash my sheets they will be covered in body hair again. My temples have recessed close to an inch, I never realized it before I started inspecting my hairline but I did have extremely minor temple recession beginning pre-tane, so I think this is accutane just accelerating mpb. I'm also starting to notice a bald spot sprouting up in the middle to back crown area similar to gdwright's photos.

I saw my derm today again, he gave me all the normal answers and agrees that it could be diffuse alopecia areata and gave me a mild steroid solution to apply to my scalp. I'm also going to start using rogaine tomorrow. lamar - what strengh steroids did you start out on? do you think mild steroids will be effective? also I wanted to ask you about your laser treatment and how I might be able to start using that too. Everything you have told me has been pretty spot on, and I basically convinced my doctor to give me the steroid today using your research and information. I'm tired of sitting back and pretending this is going to go away and want to be more proactive before things get really bad and I'm wishing I had started countermeasures earlier. You said you have seen good results with your treatment and have essentially halted the hair loss correct? I appreciate all your help and hope the best to everyone else experiencing this. It's tough but I think the best way to approach it is to stay positive no matter what and to do what you can while you can.

Hey everyone -

 

I've posted a few times but just to update everyone, I'm 23 and took 40mg for less than 3 weeks and stopped after I noticed excessive hair shedding. That was 4 months ago to the day. After I stopped accutane I got intense scalp inflammation and itching/burning spells all over my body which still persist. I've used jojoba oil on my scalp and taken grapeseed extract but haven't really seen any results. I had a brief regrowth period about 2.5 months after I stopped accutane but the shedding never stopped so my hair is getting bad again. Also, I shed hair from all over my body, I'm pretty hairy so I can't notice it but 3 days after I wash my sheets they will be covered in body hair again. My temples have recessed close to an inch, I never realized it before I started inspecting my hairline but I did have extremely minor temple recession beginning pre-tane, so I think this is accutane just accelerating mpb. I'm also starting to notice a bald spot sprouting up in the middle to back crown area similar to gdwright's photos.

 

 

I saw my derm today again, he gave me all the normal answers and agrees that it could be diffuse alopecia areata and gave me a mild steroid solution to apply to my scalp. I'm also going to start using rogaine tomorrow. lamar - what strengh steroids did you start out on? do you think mild steroids will be effective? also I wanted to ask you about your laser treatment and how I might be able to start using that too. Everything you have told me has been pretty spot on, and I basically convinced my doctor to give me the steroid today using your research and information. I'm tired of sitting back and pretending this is going to go away and want to be more proactive before things get really bad and I'm wishing I had started countermeasures earlier. You said you have seen good results with your treatment and have essentially halted the hair loss correct? I appreciate all your help and hope the best to everyone else experiencing this. It's tough but I think the best way to approach it is to stay positive no matter what and to do what you can while you can.

Hey cmerski,

Good to hear youare getting started early. I'm 25 and took accutane almost 10 years ago, and am only now aiming treatment for hair loss in the right direction. I wanted to offer some hope in that I have been continually shedding between 100-250 or so hairs a day since my course, and still have a decent head of hair. My hairline went right away, and I assumed a Norwood ii by the time I was 18, maybe earlier, but have only very gradually thinned out elsewhere. What I have noticed is that 95% of the hair I continually shed is shorter than the rest (like only 1/2 an inch), and seems finer as well. I have read that diffuse AA is thought to go hand in hand with a shortened anagen phase, and that it can lead in this manner to miniaturization. This all seems to make perfect sense. I would also like to thank you lamarr, you have been a great help and have given me hope if nothing else. My mom is willing to prescribe me topical steroids, but is having me see a derm next Thursday to possibly verify diagnosis, but really just to get first hand advice on potency, dosage, and long term steroid use safety in general. My mom is very concerned as she is not a derm herself. I will let everyone know how this all turns out. My main goals are to increase hair density, and enable hair length (my hair looks extremely thin when grown out as most hairs only reach 1/2-1 inch before falling out). Oh btw, any advice as to how to handle my derm appointment would be appreciated. I have a lot of this info in my head, but if there is something I should read that makes the accutane-diffuse AA connection more clear, it would probably be good to have in my arsenal.

Thanks, JP

Hey everyone -

 

I've posted a few times but just to update everyone, I'm 23 and took 40mg for less than 3 weeks and stopped after I noticed excessive hair shedding. That was 4 months ago to the day. After I stopped accutane I got intense scalp inflammation and itching/burning spells all over my body which still persist. I've used jojoba oil on my scalp and taken grapeseed extract but haven't really seen any results. I had a brief regrowth period about 2.5 months after I stopped accutane but the shedding never stopped so my hair is getting bad again. Also, I shed hair from all over my body, I'm pretty hairy so I can't notice it but 3 days after I wash my sheets they will be covered in body hair again. My temples have recessed close to an inch, I never realized it before I started inspecting my hairline but I did have extremely minor temple recession beginning pre-tane, so I think this is accutane just accelerating mpb. I'm also starting to notice a bald spot sprouting up in the middle to back crown area similar to gdwright's photos.

 

 

I saw my derm today again, he gave me all the normal answers and agrees that it could be diffuse alopecia areata and gave me a mild steroid solution to apply to my scalp. I'm also going to start using rogaine tomorrow. lamar - what strengh steroids did you start out on? do you think mild steroids will be effective? also I wanted to ask you about your laser treatment and how I might be able to start using that too. Everything you have told me has been pretty spot on, and I basically convinced my doctor to give me the steroid today using your research and information. I'm tired of sitting back and pretending this is going to go away and want to be more proactive before things get really bad and I'm wishing I had started countermeasures earlier. You said you have seen good results with your treatment and have essentially halted the hair loss correct? I appreciate all your help and hope the best to everyone else experiencing this. It's tough but I think the best way to approach it is to stay positive no matter what and to do what you can while you can.

 

Hey cmerski,

 

Good to hear youare getting started early. I'm 25 and took accutane almost 10 years ago, and am only now aiming treatment for hair loss in the right direction. I wanted to offer some hope in that I have been continually shedding between 100-250 or so hairs a day since my course, and still have a decent head of hair. My hairline went right away, and I assumed a Norwood ii by the time I was 18, maybe earlier, but have only very gradually thinned out elsewhere. What I have noticed is that 95% of the hair I continually shed is shorter than the rest (like only 1/2 an inch), and seems finer as well. I have read that diffuse AA is thought to go hand in hand with a shortened anagen phase, and that it can lead in this manner to miniaturization. This all seems to make perfect sense. I would also like to thank you lamarr, you have been a great help and have given me hope if nothing else. My mom is willing to prescribe me topical steroids, but is having me see a derm next Thursday to possibly verify diagnosis, but really just to get first hand advice on potency, dosage, and long term steroid use safety in general. My mom is very concerned as she is not a derm herself. I will let everyone know how this all turns out. My main goals are to increase hair density, and enable hair length (my hair looks extremely thin when grown out as most hairs only reach 1/2-1 inch before falling out). Oh btw, any advice as to how to handle my derm appointment would be appreciated. I have a lot of this info in my head, but if there is something I should read that makes the accutane-diffuse AA connection more clear, it would probably be good to have in my arsenal.

 

Thanks, JP

 

Well aren't we in the same situation...My hair also only grows out very short before falling.I'm wondering how bad is your hair right now?How is the hairline?I think out of the lot of people that is here yours sound the most similar to mine because both of our hair line is going really quick.Alot of people here still have their hairline after 1-2 years but mine seems to have dissapear in a mere 7-8 months.

Well aren't we in the same situation...My hair also only grows out very short before falling.I'm wondering how bad is your hair right now?How is the hairline?I think out of the lot of people that is here yours sound the most similar to mine because both of our hair line is going really quick.Alot of people here still have their hairline after 1-2 years but mine seems to have dissapear in a mere 7-8 months.

Yes, I can't quite remember, but I definitely noticed receding soon after tane. I'd say it was rapid at first, and then slowly took some more for the first five years. I really think the hairline kinda stopped going around then, but I was definitely still shedding all over, mainly the top. About three years ago I started using finasteride, and have used minox as well. The fin may have further halted the hair line, but I continue to shed. I think when I use the minox consistently it at least slows shedding, and does seem to help density a bit. I have been really consistent with minox the last two months, and have grown my hair out from a buzz. My hair seemed pretty thin on top with it buzzed, which is what jolted me to do this research, as I hadn't had a buzz in a while. But now that it is growing in, it seems a bit fuller. I have not had any real regrowth at the hairline though, ever I have added grape seed extract and biotin and a B-complex to my regimen and have also ordered lamarrs essential oils. Hopefully I will also get on some topicals, and we will see how it goes. I'm confident that if I actually can slow down the shedding, I will be able to regain some density, because my hair is still growing. If I see good results with this, I might also try xandrox on my hairline. Good luck, and just hang in there. At 7-8 months it might get a little worse, but it will most likely get better. And if you are doing things for it, hopefully you are better off than I was.

JP

Thanks for the kind words guys, makes it worth while me coming back to give advice!!

Let me know what steroid you were prescribed, a mid potency steroid can be nearly as helpfull as a super potent one. With this condition the good thing is the hair follicles don't EVER really die like in MPB. They can always be regenerated. Lasers are very effective in alopecia areata (google LLLT alopecia areata).

I also think xandrox is a very good product for us, people on hairloss forums make their own versions of xandrox, it is called zix and zix 11.

As for how to approach this with a derm, well that is a difficult one. I have been to derms and pretty much told them what i thought i had (which turns out i was correct) and they totally dissmissed me.

I think you need to be carefull when mentioning accutane, perhaps even wait until you have had them take a close look at your hair, by all means make suggestions as to what you feel you may have. Personally i would perhaps tell a white lie and say you have alopecia areata in the family. The thing is you see, dermatologists are very quick to defend accutane. One because they don't want to be called as witnesses in court, up against the big giants that are roche, but then also because it is one of their best tools for severe acne. They don't want to give it a bad name (ha as if they could make it any worse).

Accutane hairloss can be effectively addressed, i don't know why i seem to be the only one who has agressive tane hairloss and has managed to work out which treatments to use. It is all just logical to me. Address the inflammation and 'tickle' the follicles into life and you prevent further loss and significantly thicken what you have.

I am also working on ways to regrow hair on the temples but this is much harder. I have had limited success though.

The steroids with minox is a really good combo and when you add lasers, in 6 months you will essentially have a whole new head of hair. I like the eseential oils alot because of the way they produce slow but TERMINAL e.g. healthy hair growth. Emu oil actually works really fast for me but over time i get small thick black hairs popping up on the hairline aswell.

If you put some effort into this and be consistent ( i haven't missed a day of steroid in like 15 months). Then you will keep your hair in good health!!

Personalyl i have been pro active since about 5 months into my hairloss. My temples at the worst points in the corners has receeded about half an inch. I am quite pleased with this...

Thanks for the kind words guys, makes it worth while me coming back to give advice!!

 

Let me know what steroid you were prescribed, a mid potency steroid can be nearly as helpfull as a super potent one. With this condition the good thing is the hair follicles don't EVER really die like in MPB. They can always be regenerated. Lasers are very effective in alopecia areata (google LLLT alopecia areata).

 

I also think xandrox is a very good product for us, people on hairloss forums make their own versions of xandrox, it is called zix and zix 11.

 

As for how to approach this with a derm, well that is a difficult one. I have been to derms and pretty much told them what i thought i had (which turns out i was correct) and they totally dissmissed me.

I think you need to be carefull when mentioning accutane, perhaps even wait until you have had them take a close look at your hair, by all means make suggestions as to what you feel you may have. Personally i would perhaps tell a white lie and say you have alopecia areata in the family. The thing is you see, dermatologists are very quick to defend accutane. One because they don't want to be called as witnesses in court, up against the big giants that are roche, but then also because it is one of their best tools for severe acne. They don't want to give it a bad name (ha as if they could make it any worse).

 

Accutane hairloss can be effectively addressed, i don't know why i seem to be the only one who has agressive tane hairloss and has managed to work out which treatments to use. It is all just logical to me. Address the inflammation and 'tickle' the follicles into life and you prevent further loss and significantly thicken what you have.

 

I am also working on ways to regrow hair on the temples but this is much harder. I have had limited success though.

 

The steroids with minox is a really good combo and when you add lasers, in 6 months you will essentially have a whole new head of hair. I like the eseential oils alot because of the way they produce slow but TERMINAL e.g. healthy hair growth. Emu oil actually works really fast for me but over time i get small thick black hairs popping up on the hairline aswell.

 

If you put some effort into this and be consistent ( i haven't missed a day of steroid in like 15 months). Then you will keep your hair in good health!!

 

Personalyl i have been pro active since about 5 months into my hairloss. My temples at the worst points in the corners has receeded about half an inch. I am quite pleased with this...

Thanks Lamarr,

I am glad to hear how the essentials work, as that is precisely what I need. I will check out the lasers too. I am almost hoping to see good results just so I can encourage others to help themselves. I figure if I see results after 10 years, others could certainly benefit more with immediate action. I will come up with a solid game plan when I go to see the derm, but my mom will be the one to prescribe me steroids. She really just wants the advice of a derm on managing long term use, soo... I just have to get a full rundown on using topical steroids on the scalp, and report back to her. What Dr. Chu says makes sense to me because youare essentially using less steroids in a month then what is typically prescribed for a single week, and then there is the whole scalp absorption thing as well. I am sure I will get the answers my mom needs. I really appreciate all your advice, keep up the good work!

JP

Oh my goodness, I've been away from this site for a year and this thread is STILL going strong. Wow!

That's all I have to say.

I'm really curious but does anyone on this forum with accutane hairloss have the same symptoms as me?What I mean is everyone is shedding hair while im not shedding at all....What seems to happen is that my hair just keeps getting thinner everywhere and then I guess eventually just kinda falls out and never grows back .Also I can only grow my hair out 4-7 inches before it stops growing considering its already growing really slowly.

lamaar-How many months did it take you before you were able to get proper treatment?

Hey lamar -

How do you apply the steroid solution? mine is just a dropper bottle and I'm just squeezing it out randomly around my scalp and hairline, is there a better way to do this?

thanks,

cavan

Hey everyone,

I saw a derm today and wanted to let everyone know what I learned. My main goal was to get advice concerning the use of long term topical steroids on the scalp, but I also got sidetracked with discussion of accutane induced hair loss in general. I could have been more prepared, but spent the last week straight in architecture studio working on a project that was due yesterday. Anywaya

For reference, this derm is partners with the number one hair loss derm in my state, who happens to specialize in alopecia areata. I would have seen her but the waiting list was three months. After explaining my history and taking a look at my hair, she believed that accutane had probably exacerbated androgenetic alopecia in my case. She of course did not buy the diffuse AA theory, but did say she had seen telogen effluvium many times with accutane, and had seen several cases where hair loss was persistent. In her opinion all persistent hair loss from accutane had an underlying androgenic cause. She also added that she had seen persistent hair loss in one female, and referred to this as female pattern baldness. Well, when I told her about my history of shedding after accutane, I could see a question mark pop into her head. She outlined a procedure for me to do a proper shed count, and said that if I am indeed shedding an abnormal amount, she would run tests on my thyroid, and iron levels. She also mentioned a low protein diet as a potential culprit. I was vegetarian for a year, but during that year made sure to get plenty of protein and outside that year eat plenty of meat. I intend on doing the shed count procedure for reference point purposes, but already know my ballpark numbers, and they have been fairly consistent the last 10 years. I also got another puzzled look from her when I mentioned I could not grow my hair out more than five inches or so. This clearly did not fit her view of androgenetic alopecia, but she said if I wanted she could do a scalp biopsy that would prove I did not have diffuse AA. She said she would rather not as it could leave a scar on my hairline, and I told her that after accutane, it would definitely leave a scar. Plus, from what Iave read here, those biopsies usually come back inconclusive.

After realizing I was not going to convince her I could even potentially have diffuse AA, I changed tactics. I began to ask questions about her other patients with alopecia areata. When I asked how she treated them, she said usually with intralesional corticosteroid injections or clobetesol topical solution. I asked if she ever used less potent steroids, but she said they were not effective. I then inquired as to side effects, and she gave a list of the usual sides (atrophy, falliculitis, etca), saying they were much more common with the injections, but where usually reversible. When I asked how long patients used the topicals, she said without hesitation, sometimes years. Then came the tricky part. For some reason I could not get a straight answer as to long term dosage. I said I had heard of people with diffuse AA having been prescribed clobetasol solution applied to their entire scalp once daily. First she said that was way too much. Then I said, so 1 ml (the amount of minox I typically use to cover most of my scalp) is too much? She said yes, way too much. I think she was confusing units, like mistaking ml for oz, because I finally asked specifically how much clobetasol solution her long term AA patients were using, and she told me 4oz lasts about 4-5 months. If you do the math, that is very close to precisely 1ml a day. Finally, I asked if there were any techniques like pulse therapy, or intermittent cessation used to mitigate potential side effects. To this she simply said yes, those types of strategies have been used. At this point I had gotten all the info I needed, and thanked her for her help (even though I had paid her close to $500 an hour!!!). She told me that her partner would be a very good person to talk to if I had further questions about this whole diffuse AA thing, and wished me luck.

Soooo, in conclusiona There does seem to be some common understanding amongst derms as to the potency, duration, and dose of topical corticosteroids in the long term treatment of alopecia areata. Though they recognize the potential for side effects with the use of any steroids, it is also very clear that topicals are a good margin safer than the injections or systemic steroids. Also, of course with a grain of salt, these sides are usually reversible upon complete cessation.

I for one am going to give them a try. I plan on being very methodological, and will discontinue use if I see no results after a certain period. If I do see results, I will then be forced with the decision to use steroids or continue losing hair. I will probably settle on some sort of pulsed therapy though. If anyone has any questions feel free to ask. Also, I would be interested to hear any suggestions as to personal efficacy evaluation. I am planning to do shed counts, and take photos of my hair buzzed to a certain length, but I am not sure how long my trial should last to ensure I see results, if any.

JP

Jp, combine minox with the topical steroids.

It makes me sick the way dermatologists never admit to the diffuse aa which accutane can cause. Sure it may appear to be male pattern baldness because of the recession you naturally get with diffuse AA. But if they look hard enough all the signs are there.

The topical steroids are fine man, give them and the minox combined atleast 6 months. Add in lasers and essential oils if you want. I plan on using minox again at some stage as it does help to a certain extent!

I use 100ml of clobetasol every 2 months and 100ml of betnovate every month.... I haven't seen any negative side effects in over a year of use. I will cut back on this when the agressiveness hopefully dies down a bit...

Also your derm probably had cream and solution mixed up. Maximum dose they say for clobetasol per week is 50ml, now i use 1/4 of this but i know i am using it long term so i shouldn't be near the maxium!!

I'm really curious but does anyone on this forum with accutane hairloss have the same symptoms as me?What I mean is everyone is shedding hair while im not shedding at all....What seems to happen is that my hair just keeps getting thinner everywhere and then I guess eventually just kinda falls out and never grows back .Also I can only grow my hair out 4-7 inches before it stops growing considering its already growing really slowly.

 

 

lamaar-How many months did it take you before you were able to get proper treatment?

I think I have this also, but I still shed slightly. The topical steroids are starting to help I think......

Jp, combine minox with the topical steroids.

 

It makes me sick the way dermatologists never admit to the diffuse aa which accutane can cause. Sure it may appear to be male pattern baldness because of the recession you naturally get with diffuse AA. But if they look hard enough all the signs are there.

 

The topical steroids are fine man, give them and the minox combined atleast 6 months. Add in lasers and essential oils if you want. I plan on using minox again at some stage as it does help to a certain extent!

 

I use 100ml of clobetasol every 2 months and 100ml of betnovate every month.... I haven't seen any negative side effects in over a year of use. I will cut back on this when the agressiveness hopefully dies down a bit...

 

 

Also your derm probably had cream and solution mixed up. Maximum dose they say for clobetasol per week is 50ml, now i use 1/4 of this but i know i am using it long term so i shouldn't be near the maxium!!

Thanks lamarr,

6 months is exactly what I was thinking. I am planning on continuing the minox twice a day for the first 3 months, and then add in xandrox 15 at night for months 3-6, and of course do shed counts and shaved photos at each transition. I may decide to wait for the xandrox until month 6, so as to single out the efficacy of the steroids as much as possible. I started the essential oil mix last night, so I will continue this as well. I have a question about the lasers though. I am sure they have been discussed here thoroughly, but I was wondering what the consensus on most economical setup is? My dad has a single laser that he uses to stimulate acupuncture points, wavelength 635-670, <5mW. It spreads out to about an inch square at six inches, could I use this? I am guessing no, as covering my head would be very tedious. Anyway, if you could let me know what the most convenient system is, and how I can order one, I would greatly appreciate it.

Also, are you using both clobetasol and betnovate together, or alternating them in some way?

MoreGano,

How long have you been using the steroids? In what ways is it starting to help? Have you noticed any regrowth or has it just slowed down the shedding? Are you gaining density back?

Thanks, JP

Everything you need to know is on this website, regarding the use of lasers (LLLT therapy).

http://www.overmachogrande.com/

lamarr1986 said:

Everything you need to know is on this website, regarding the use of lasers (LLLT therapy).

http://www.overmachogrande.com/

Thanks Lamarr,

Wow, that is my kind of project. I will be constructing my own as soon as this term ends and I have some spare time. How many diodes do you currently use? And does this cover your entire scalp or must you reposition every couple minutes? I can see the advantages in convenience from a helmet type that covers the entire scalp, but from a cost perspective I can imagine easily constructing a dense panel, and moving it around a couple times. What is your take on this? I know overmachogrande recommends simultaneous stimulation, but is it really that important?

So I have been doing hair shed counts very precisely the last few days, and astonishingly I am still shedding over 400 hairs per day on average. This is just shocking to me. I knew I was still shedding abnormally, but I had no idea it had been that bad this whole time. I have been shedding like this for almost ten years!!! What is really amazing is that I still have a pretty decent head of hair. It just keeps growing in and falling out, which completely explains why I can't achieve any length, and the longer I keep it the thinner it looks.

I will be starting clobetasol scalp solution tomorrow, but my mom has made it clear that she is only prescribing this to me on a trial basis. She says if I do see results, she would like me to again seek the supervision of a derm to assess long term management, and will not continue to prescribe me steroids as it is not her area of medicine. I'm really worried that finding a derm that will believe me is going to be hard and also costly. I hope that the results are drastic enough that they cannot be ignored, and I plan on documenting them very thoroughly.

My mom has agreed to a six month trial, and will prescribe me enough solution to apply 1 ml/day. I am wondering how to best utilize this amount. I have the feeling that because of the long standing nature of my case, results may take longer to appear. I guess I generally feel that the follicles will need more time to readjust, since they have been trapped in a state of flux for so long, and I believe have all experienced some degree of miniaturization. For this to reverse, wouldn't I need at least a couple hair cycles to see noticeable change? Is this reasonable?

I was thinking I might just use 1 ml every other day for a year, or perhaps every day and every other day on alternating weeks, for a total of 9 months. If this type of schedule would be effective, I would think it would also limit the chances of sides, and not give my mom anything to worry about. I am personally not scared of a little folliculitis in the name of science, but I know my mom would freak, and I can't say it would be much fun either. What do you guys think? What's my best option?

Thanks, JP

Jp i can tell from your posts that your a smart dude. You will win this battle....I use 165 lasers at the moment in a hood style, i am soon to get a helmet and upgrade to 225 diodes. Using say 100 and moving them across the entire scalp in three sections, each exposed for 20 minutes would be good.

As for the steroids.... If you are using only clobetasol, i would be more inclined to apply more EVERY other day. e.g. 2ml every other day verses 1ml very day. Do this at night aswell.

1ml isnt much imo, so i would apply it to the top of the scalp if this is your main area of concern....

Definenetly go with the every other day if you are only using clobetasol.... I say this because you WILL get folliculitus if you use clobetasol every day. I do but i put up with it only on a small section of my hairline. This is partly why i don't use clobetasol across the entire scalp. Like i said though every other day should limit the folliculitus.

And yes you are spot on with the other things, the good thing is you probably aren't going to receed any more than you have already (hairline i mean). The rest of your hair should regenerate pretty well once your relieve the inflammation and stimulate some growth.

Hopfully your mum will see (especially when using the lasers aswell) that you will have no side effects from the steroids. The lasers ensure no skin thinning will occur to any degree.