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The answers I got from my doctor about hair loss

 
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(@blazedjin)

Posted : 06/26/2008 9:23 am

Wow hair loss sucks but there is no reason to be hostile against each other because in the end we are all on the same boat. Don't want it to sound like its some competition but I doubt anyone else's hair loss is as severe as mine, and to make it worse my hair just dumps like crazy when I drink alcohol! This shit sucks balls sooo much but fuck it I am young and there is no god damn way Im fucking let this bullshit take control of me. Life goes on

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(@lamarr1986)

Posted : 06/26/2008 1:32 pm

Lamarr, For you information, I DID PM those who were worried about hair loss and give my advice to them BEFORE THEY START ACCUTANE! I am not like you, who alway blame Roche! I have been very fair regarding this matter and I would PM those people and told them everything I gone thru and it is their own decision to take accutane or not at the end of the day!

 

To be honest, you are no different from the others who successfully took accutane without severe side effects. You kept praising how wonderful Dr. Chu is and how steriod works! But do you have any idea how all this topical steriod like Dermovate and Olux form had already caused some others even more problem?

 

I feel that you should read up those posts from keratin.com. You are just one of the few lucky one who did not suffer from topical steriod side effect! If you hate those people who speak up for ACCUTANE and PRO ACCUTANE then you yourself should wake up your idea and stop promoting topical steriod to people here! It can cause severe side effects (just like accutane) if you are unlucky!

 

Ask yourself, would you hate accutane if it give you clear skin without a single side effect? I bet your attitude would change 180 degree toward Roche and who knows you might just be another Pro Accutane like PrznKing.....

 

And don't worry because I will "FUCK OFF" soon!

 

To Rudolph: Thanks for coming back to update and I really appreciate that.

 

 

I just had another appointment with Dr Chu today. Topical steroids on the scalp are 100% fine. The skin thinning you will get is invisible to the naked eye and will not prevent future regrowth. I recommend to anyone that they try topical steroids.

 

I have never been pro or anti anything when it comes to accutane for acne, i stay on the fence, i try and siscourage people when it's not needed or to take a lower more safe dose. I also know roche are a terrible company that lie and cheat their way out of anything. There is a reason why they were fined 100million a few years back.

 

Dr Chu is wonderfull and any of his patients would agree.

 

Edit: you also know i am different because i always did everything i could to make you feel better or help you treat the problem. I'm gonna end this arguement now though.

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(@lamarr1986)

Posted : 06/26/2008 1:38 pm

Again, back to what I was saying before. Does anybody know anyone who can translate into German? There are researchers who are working on this exact problem (retinoid-induced hairloss) and their last publication was in 2004. It's 2008 now and i'm interested in what's happened since then. If anybody can help, it's them.

 

Lamarr seems like he's got the most effective treatment regimen going on here, but there may be a more effective one, or a specific product, supplement, etc that would be most effective in stopping the inflammation/ whatever the hell is happening to our hair. Like I said before, my hairloss nearly stopped after about 6 weeks of the regimen I was on (see my previous posts for details)... it started again like crazy a few weeks ago but I'm suspicious it may be due to the release of stored isotretinoin in fat after starting to work out again or possibly stress from my busy summer schedule).

 

Lamarr-- sorry to keep asking but i'm not sure if you've noticed my question: what do you know about TGF-beta antagonists (what substances, supplements, etc?). Have you followed up on this stuff at all?

 

I'm also wondering if we can get a moderator for this forum or something so we can keep it professional...

 

The trouble is man, you can't simply block TGF beta systemically you need it for certain processes. So if you were to take an internal TGF beta antagonist you would develope other side effects if you inhibit its production enough. You simply cannot do it long term systemically. The activ m is supposedly good, but i haven't looked into TGF beta antagnonists/blockers for the reaosn above.

 

Funny you should mention the stored accutane, i also mention it to Dr Chu. He said that going on the litrature that accutane is gone from the body within a month... I don't know if i agree with that, which i told him. I described the same thing as you just did and they way he explained it is that possibly when you loose fat, stored vitamin A (beta carotene). Is release and because some of us have developed problems in metabolising vitamin A or the way in which our body now deals with it is altered, this could explain the problem!!

 

So i guess the key is to burn off that body fat slowly, i plan on doing that soon but at the same time i will be taking French green clay and NAC (to try and absorb the vitamin A which is released from the adipose tissue)

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(@jnt867)

Posted : 06/26/2008 2:45 pm

That's interesting- I agree that accutane itself is gone from the body within the time frame studies have shown it to, but that doesn't rule out the possibility that the fat could still be storing extra retonic acid or other vitamin-a derivatives which may have been synthesized by the body from the accutane(?) Dr. Chu's explanation is probably more plausible, though its a little bit frightening to think that my body is having trouble metabolizing regular vitamin A now. I've cut vitamin A from my diet almost completely, except for the bit that comes in eggs.

 

Regardless of the mechanisms at play, I've definately felt susipciously the same way as I did while on accutane after I started working out a lot... hair loss increased (the biggest problem for me and my reason for being here), more thirsty, dry lips and skin, itching in random places and especially on the scalp... right now for example, my chest has been itching like crazy. Can't seem to scratch it enough. Last night it was my butt! I'm not talking normal itches that you can get rid of easily, I mean ones that don't go away even after scratching them. It will continue to itch like crazy and then randomly stop and it'll be fine. None of this happened from about December through April, after I was off the accutane and not doing much physical exercise.

 

With the TGF beta stuff- what else is it needed for that you know of?

 

On another side note, I had an appointment scheduled with a dermatologist at Johns Hopkins next week (I'm living in DC right now for the summer)... Johns Hopkins... supposed to be the best in the country, etc... I emailed the derm about my situation and she basically told me to take a hike. Her words were "I don't want to discourage you from coming in, but based on your described history I wouldn't have any additional recommendations regarding your current theraputic regimen."

 

Clinical Dermatologists are the wrong ones to talk with about our problem (with a few exceptions it seems). We need to speak with the (few) hair follicle specialists out there and people doing medical research in hair follicle biology. There are good doctors at UPenn who do this kind of stuff (the place where they just learned how to grow new hair follicles, and thus give me hope that if I go bald I'll be able to do that maybe...). I have an appointment scheduled with them but it's not until October :( in the mean time i'm going to keep trying to contact these German folks who seem to be the leading experts on the subject.

 

 

 

 

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(@lamarr1986)

Posted : 06/26/2008 3:19 pm

That's interesting- I agree that accutane itself is gone from the body within the time frame studies have shown it to, but that doesn't rule out the possibility that the fat could still be storing extra retonic acid or other vitamin-a derivatives which may have been synthesized by the body from the accutane(?) Dr. Chu's explanation is probably more plausible, though its a little bit frightening to think that my body is having trouble metabolizing regular vitamin A now. I've cut vitamin A from my diet almost completely, except for the bit that comes in eggs.

 

Regardless of the mechanisms at play, I've definately felt susipciously the same way as I did while on accutane after I started working out a lot... hair loss increased (the biggest problem for me and my reason for being here), more thirsty, dry lips and skin, itching in random places and especially on the scalp... right now for example, my chest has been itching like crazy. Can't seem to scratch it enough. Last night it was my butt! I'm not talking normal itches that you can get rid of easily, I mean ones that don't go away even after scratching them. It will continue to itch like crazy and then randomly stop and it'll be fine. None of this happened from about December through April, after I was off the accutane and not doing much physical exercise.

 

With the TGF beta stuff- what else is it needed for that you know of?

 

On another side note, I had an appointment scheduled with a dermatologist at Johns Hopkins next week (I'm living in DC right now for the summer)... Johns Hopkins... supposed to be the best in the country, etc... I emailed the derm about my situation and she basically told me to take a hike. Her words were "I don't want to discourage you from coming in, but based on your described history I wouldn't have any additional recommendations regarding your current theraputic regimen."

 

Clinical Dermatologists are the wrong ones to talk with about our problem (with a few exceptions it seems). We need to speak with the (few) hair follicle specialists out there and people doing medical research in hair follicle biology. There are good doctors at UPenn who do this kind of stuff (the place where they just learned how to grow new hair follicles, and thus give me hope that if I go bald I'll be able to do that maybe...). I have an appointment scheduled with them but it's not until October :( in the mean time i'm going to keep trying to contact these German folks who seem to be the leading experts on the subject.

 

Well that sucks bud, can't believe she would say that. Well actually i can, they are all disscourage by roche to not admit anything involved with this hairloss is caused by accutane, as soon as you mention it they will dissmiss you. Dr Chu is more interest in the welfare of his patients than any other and therefore has no problems admiting the cause.

 

About the TGF beta, it is an immune regulator, so for example if you inhibit it completely only god knows what would happen exactly. But likely things would be flu like sides, problems with hormone regulation, autonomic issues. Anything really, it is just involved with so many processes.

 

If i don't avoid vitamin A my sides become much worse... i only recently discovered i was having an issue with oats (i use alot of them when bulking). They contain alot of vitamin A, hence why as soon as i cut them out my mouth ulcers improve again.

 

I specifically asked him about it being stored in the adipose tissue (body fat) and he said he can only rely on the information given to him by roche, which as we should know by now isn't reliable!!

 

Avoiding the fat soluble form of vitamin A is a good game plan in helping things in the long run, some vitamin A is needed, but just get it in its water soluble form so the body doesn;t store it!!

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(@jnt867)

Posted : 06/26/2008 11:44 pm

Interesting- I think that local TGF beta inhibition was more along the lines of what was being recommended as possible treatment. I've been using the Activ-M and did definately have my hair almost stop falling out for a while... just so frustrated that it's picked up again.

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(@lamarr1986)

Posted : 06/28/2008 4:10 pm

This is for you JNT.

 

trans-3,4'-Dimethyl-3-hydroxyflavanone, a hair growth enhancing active component, decreases active transforming growth factor beta2 (TGF-beta2) through control of urokinase-type plasminogen activator (uPA) on the surface of keratinocytes.

 

trans-3,4'-Dimethyl-3-hydroxyflavanone (t-flavanone) is a synthetic compound with hair growth enhancing activity that is effective against male pattern alopecia. t-Flavanone was designed as a derivative of astilbin, the active hair growth enhancing component of Hypericum perforatum extracts. This study was designed to elucidate the mechanism of hair growth enhancement by t-flavanone. We investigated the effects of t-flavanone on transforming growth factor beta (TGF-beta), a known catagen-inducing factor induced in hair papilla cells by male hormone. When t-flavanone was added to cocultures of human hair papilla cells and human keratinocytes, there was no change in the total level of TGF-beta2. However, levels of active TGF-beta2 were reduced, suggesting the involvement of t-flavanone in the activation pathway of TGF-beta2. In order to investigate the effects of t-flavanone on TGF-beta2 activation by human keratinocytes, we evaluated the level of active TGF-beta2 converted from the inactive form in t-flavanone-treated human keratinocytes. The amount of active TGF-beta2 was reduced compared with controls suggesting that t-flavanone suppresses the TGF-beta2 activation cascade in human keratinocytes. We then examined the activity of urokinase-type plasminogen activator (uPA), the rate-limiting enzyme in the TGF-beta2 activation cascade, in t-flavanone-treated human keratinocytes. We found that t-flavanone reduces uPA activity on the keratinocyte surface. t-Flavanone is a hair growth enhancing component that has a novel mechanism of action which suppresses TGF-beta2 activation, and thereby is expected to have therapeutic effects on other types of alopecia in addition to male pattern alopecia.

 

PMID: 18310908

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(@jnt867)

Posted : 07/01/2008 8:26 am

Thanks lamarr! That's exactly the kind of information I was looking for.

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(@jnt867)

Posted : 07/01/2008 8:37 am

LOL the irony is that I can't find a single product out there which contains this ingredient- the only one that was being sold in the USA was discontinued because the FDA sent them a letter telling them their product can't be legally sold in the "cosmetics" category. Moreover, the only other place I could find it (Japan) recently decided to stop shipping to the US...

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(@gracie1234)

Posted : 07/01/2008 9:53 am

This is exactly what we need!!! JNT - this article was just published this year - hopefully that means that we might be able to buy it somewhere, sometime soon!! Fingers crossed. I'll look around as well.

Just found this: what do you think?

[Edited link out]

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(@lamarr1986)

Posted : 07/01/2008 10:15 am

Gracie, i know of a few people who claim to of seen some results in terms of thickening and some regrowth (they have male pattern baldness though) from the product you just provided a link for. May work even better for us though...

 

I will probably try substituting it with my activ -m when it runs out and try to gauge which is better.

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(@gracie1234)

Posted : 07/01/2008 1:46 pm

Check out this-

 

http://killerstrands.blogspot.com/2008/05/...onditioner.html

 

main ingredient is t-Flavanone. Looks awesome - especially since you keep it on your head overnight. I just emailed the inventor.

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(@rjfnyu)

Posted : 07/02/2008 5:38 pm

I am curious if anyone has tried homeopathic Accutane.

 

It is available from Helios and Ainsworths in the UK.

 

I remember several years ago atleast two people on the Roaccutane Group Forum noticed very significant improvement with this. Neither acquired the homeopathic Accutane from either of these two sources if I remember correctly. Homeopathy is a much more commonly accepted practice in the UK than the US, so it might even be possible in the UK to find a homeopath with experience in this area. I am in no way saying that this will be a miracle cure, but I think that there is relatively little risk and cost in trying this.

 

I myself have tried the remedy from Ainsworths, which had no effect, but from what I know about homeopathy, the dilutions they carry are not appropriate to help someone who is about 10 years off of Accutane.

 

Not to make anyone pessimistic, but I am ten years off of Accutane and I still have hair shedding, redness and dry skin. Ironically, I did not even notice my shedding until after two years taking Accutane. The redness and dry skin occurred while on the drug.

 

 

 

 

 

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(@jnt867)

Posted : 07/03/2008 7:53 am

nice finds gracie! though i'm not so sure about the Thriven stuff- looks gimmicky. Where does it say the active ingedient is t-flavenone? Also, this "secret supplement" sounds a little creepy... isn't it illegal to sell a consumable like that and not tell the customer what's in it?

 

 

rjfnyu- could you please give us a little bit of background info? How much accutane did you take and for how long? also how is your hair overall these days? Are you visibly balding? what have you done to try and combat it?

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(@sverd)

Posted : 07/03/2008 5:04 pm

I'm going back on accutane

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(@rjfnyu)

Posted : 07/03/2008 9:47 pm

I took 60 mg per day for 6 months in 40 mg and 20 mg dosages when I was 17. I am now 28. Within ten days of taking it, I had redness and dry skin and lips. None of that has changed very much since. When I was 20, I began noticing hair shedding. At this time, I did many things that could have aggravated it. I was swimming about 6 days a week in a chlorinated pool, I was experimenting with a vegetarian diet and drinking about 5 glasses of soy milk per day with my body hating it and I took multiple stage one injections of the Hepatitis B vaccine after I kept forgetting to get the second stage. Either way, I began noticing hair fallout at about 20 to 50 hairs when I would take a shower. Over this time my hair noticeably thinned out. I thought I was going bald and tried using Revivogen one time and it caused so much fallout in one night that I almost had a nervous breakdown the next day. After giving myself a crewcut, I could see that my hair loss was completely diffuse and not male pattern. I stopped the swimming and I changed the diet and things seemed to slightly stabilize.

 

My hair loss since then has improved, but it definitely has continued to shed and the density has not improved. My hair loss is completely evenly diffuse on my scalp and the hair falls out with the bulb from the scalp. I would say that I have definitely lost more than 50%.

 

I have a lot more to say, but not the time at the moment.

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(@sverd)

Posted : 07/03/2008 10:38 pm

Christ I dont know what to do now. My life is misery because of all the cysts covering both sides of my face and I feel like accutane is the only cure, does anyone know anything else nearly as effective as accutane?

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(@lamarr1986)

Posted : 07/04/2008 12:35 am

Home light therapy and an exfolient will work just as well as tane.

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(@gracie1234)

Posted : 07/07/2008 12:04 pm

Marc - how often do you use the laser max? Just received it today. Another $400 down the drain!

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(@lamarr1986)

Posted : 07/07/2008 12:10 pm

Every other day!! I must say i have been using it for about 3-4 months now andmmy hairline hasn't budged much ATALL. It was slowly moving back but it seems to of stopped and if anything is filling in more than ever.

 

I cannot say for certain what this is mostly down to though.

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(@gracie1234)

Posted : 07/07/2008 2:25 pm

For 20 minutes? btw - did you add all those addt lasers like that guy Rosario showed on another web-site?

 

Glad to hear about your hairline. I am praying for mine to come back. it's great to be a woman and have a receding hairline!

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(@precision-response)

Posted : 07/08/2008 10:46 am

alright, haven't posted on here for a few years, but hopefully somebody hear can help me out. can't say i managed to get through the entire thread, but i tried my best.

 

 

went on accutane over two years ago now, for mild/moderate acne. within 10 days of commencing my treatment, i noticed my hair shedding rate increase dramatically. i decided to discontinue treatment after only about 3 weeks.

 

2 years later, my hair is still shedding at an accelerated rate, and nobody can quite tell me whats going on. i was intially diagnosed with telogen effluvium / auto immune response.

 

anyway, just recently i underwent an scalp biopsy under the suggestion of a derm. i thought the results would show something along the lines of 'chronic telogen effluvium' (even though this is uncommon in men) - although this was not the case.

 

results are as follows:

section A: sections show a non-scarring process, at the isthmus, 47 follicles are counted, of which 12 are vellus or near-vellus in proportion and 6 of these minaturised telogen hairs

section B: sections show a non-scarring process. at the isthmus, 46 hair follicles are counted, of which 20 are vellus or near-vellus in proportion and 6 are telogen.

 

conclusion: the finding favours androgenetic alopecia with mild associated telogen shedding.

 

 

i'm still finding it hard to swallow that im supposedly experiencing early male pattern baldness, at such a young age (i'm now 21, but this 'thinning' began just before I was 19. i had the fullest head of hair, too). i know its far from unheard of to be experiecing MPB at my age, but the fact that it utterly coincided with my accutane misadventure, makes me believe its gotta be something else.

 

 

i would greatly appreciate if somebody could shed some light on my circumstance. i'm particularly interested if somebody could disambiguate by vellus / telogen count. i still don't know what it means. does the doctor's conclusion adequately reflect the section results?

 

please, anyone, i'm getting pretty desperate.

 

 

cheers.

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(@gt_stang_2006)

Posted : 07/08/2008 11:15 am

MOST PEOPLE DO NOT GET HAIR LOSS FROM THE TANE!!

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(@lamarr1986)

Posted : 07/08/2008 11:49 am

For 20 minutes? btw - did you add all those addt lasers like that guy Rosario showed on another web-site?

 

Glad to hear about your hairline. I am praying for mine to come back. it's great to be a woman and have a receding hairline!

 

 

I use it for about 25-30 mins. I have done a similar thing to others on certain forums yeah, kept me busy for a day or two.

 

Your hairline should eventually recover gracie, the lasers will definently help.

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(@jnt867)

Posted : 07/08/2008 4:10 pm

Precision- what have you been treating the hairloss with over the past two years? Have you noticed a decrease in shedding with any of the treatments? Also, what other side effects besides hairloss did you notice when you stopped the drug? You must have had some kind of bad reaction to it because 20 mg twice daily is a pretty small dose.

 

I'm still really pissed that my hairloss pretty much stopped for a month and then picked up again even worse than before.... i'm starting to use rogaine again (3rd time now) and this time i'm gonna keep using it. also going to integrate that t-flavenone shit in along with the activ-m somehow.

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