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Hair Loss

 
MemberMember
7
(@09eric09)

Posted : 02/10/2013 3:25 pm

Ok I've searched and searched, has anybody found ANYTHING that can help with hair loss? I read some people claim the used a colon/liver cleanse, and it seemed to help. I've been off accutane a couple of years, and my hair has just gotten progressively worse.

I also wanted to say that I did get too much accutane in my system, because I was sick with pseudotumor cerebri (after my derm upped my dose to 80 mg). So at one point I do believe I had too much vitamin A in my body.

Any other suggestions? would a colon cleanse and liver cleanse help? I have heard a Vitamin A toxicity can effect a person years later.

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MemberMember
35
(@user187201)

Posted : 02/10/2013 8:45 pm

No it will not help.

It is built up in the receptor cells of your skin,bone, tissues, etc etc.

If you are like me and 2 years out from treatment and still losing hair, lashes and eyebrows its is due to the cellular division having been affected and you are most likely also suffering from dryness of mucosal tissue, hair, eyes, skin etc etc.

Cleanses only stress the body systems and there is no way of getting accutane out of your system.

Being chemo agent it works like a chemo drug so in a sense it is doing its job. Sad, but true.

Are you male or female?

Your best bet is to focus on nutrition and holisitc remedies.

No supplements will help this situation either aside from maybe taking Vit C,E and B complex to help you on a cellular level and support your system.

Its said that long term chronic telogen effulvium can trigger both androgenic alopecia and or alopeica areata ( diffuse form)

And yes, Vitamin A toxicity not only affects for many years but is most likely permanent in our case.

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MemberMember
7
(@09eric09)

Posted : 02/10/2013 9:33 pm

I'm a male. Since you mentioned cells, what other ways do you think accutane can damage cells? For example, I've heard of people getting auto immune diseases such as ms.

 

Do you think this is possible to some people If they get too much?

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MemberMember
35
(@user187201)

Posted : 02/10/2013 9:56 pm

Yes I do - 100%.

chemotherapy destroys the immune system - usually patients are given a stem cell transplant after chemo which rebuilds the immune system.

Please come over to the "How to repair the long term damage caused by Accutane" thread where we are attempting to heal our bodies caused by this devastating drug.

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MemberMember
7
(@09eric09)

Posted : 02/10/2013 9:58 pm

Thank you. The reason I ask is because I have an MRI in March. My doc thinks I could have MS. I'm pretty scared, I can't help but think it was accutane.

 

Is there anything you can recommend? Should I start changing my diet or something?

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MemberMember
148
(@oli-girl)

Posted : 02/10/2013 10:31 pm

Aren't you the one who posted about having a psuedo tumor from Accutane? Are they treating you for this? Are you taking anything for this? Psuedo Tumor can have the same symptoms as M.S. Have they done a lumbar puncture ever??? It could why your having hairloss in which nothing will help that much at the moment! When did you last have labs drawn?

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MemberMember
7
(@09eric09)

Posted : 02/10/2013 10:42 pm

Had a spinal tap for pt. I told my doc about psuedo tumor in the past, that's why he sent me to a neurologist again. But it does not feel the same as psuedo tumor this time around, that's why I'm waiting for my MRI. I had my labs done about a week ago, everything was fine.

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MemberMember
10
(@lillyrose7)

Posted : 02/11/2013 2:15 am

If you look on the internet, you see the accutane is described as a drug which 'rapidly kills dividing cells' and is 'non selective'. Everything in our body is made of cells, accutane doesn't choose what to destroy, including your hair, your organs etc. It attacks everything.

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MemberMember
7
(@09eric09)

Posted : 02/11/2013 10:52 am

And it doesnt ever stop killing cells? Even years later? Would you happen to know if all chemo drugs do the same?

 

If this is true, I truly am afraid that I am going to die a premature death.

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MemberMember
10
(@lillyrose7)

Posted : 02/11/2013 3:37 pm

hey!

omg lol sorry i made you think that. Thats not what I meant. It is while you take the medication, but of course, some of the damage that occurs during treatment can come to your awareness even months later.

About other chemo drugs, i know nothing, i just know accutane was developed as a cancer med and a side effect during trials was 'nice, clear skin'.

http://chemocare.com/chemotherapy/drug-info/accutane.aspx

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MemberMember
7
(@09eric09)

Posted : 02/11/2013 3:52 pm

hey!

omg lol sorry i made you think that. Thats not what I meant. It is while you take the medication, but of course, some of the damage that occurs during treatment can come to your awareness even months later.

About other chemo drugs, i know nothing, i just know accutane was developed as a cancer med and a side effect during trials was 'nice, clear skin'.

http://chemocare.com/chemotherapy/drug-info/accutane.aspx

Thanks, you guys have been a great help. I just can't believe this is happening to me. Everyday I wish I could go back and tell my younger self not to take this stupid drug, I wish I wouldn't have worried about my looks so damn much. Now look, I'm losing my Hair! Lol.

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MemberMember
35
(@user187201)

Posted : 02/11/2013 5:40 pm

http://www.change.org/petitions/tell-roche-pharmaceuticals-give-us-the-truth-about-accutane

PLEASE tell your story - sign the petition to go to the US senate

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MemberMember
7
(@09eric09)

Posted : 02/11/2013 8:21 pm

I will.

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MemberMember
10
(@lillyrose7)

Posted : 02/12/2013 2:32 pm

i honestly dont give this med much longer on the market. But they make a lot of money out of it, the pharma indsustry.

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MemberMember
7
(@09eric09)

Posted : 02/12/2013 3:11 pm

I agree. I hope they take it off the market everywhere, what really scares me is the whole cell/DNA theory with accutane. Do you guys believe it can cause cell damage? It's already been years since it gave me psuedotumor cerebri. Now I'm going bald, by now I would almost assume these things are permanent.

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MemberMember
148
(@oli-girl)

Posted : 02/12/2013 9:22 pm

i honestly dont give this med much longer on the market. But they make a lot of money out of it, the pharma indsustry.

Wish that was true not gonna happen at least in U.S and Canada! They just approved another form of it from another company along with generics!

I agree. I hope they take it off the market everywhere, what really scares me is the whole cell/DNA theory with accutane. Do you guys believe it can cause cell damage? It's already been years since it gave me psuedotumor cerebri. Now I'm going bald, by now I would almost assume these things are permanent.

Not to scare you, but yes cell damage and alteration of DNA

I agree. I hope they take it off the market everywhere, what really scares me is the whole cell/DNA theory with accutane. Do you guys believe it can cause cell damage? It's already been years since it gave me psuedotumor cerebri. Now I'm going bald, by now I would almost assume these things are permanent.

Not to scare you, but yes cell damage and alteration of DNA

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MemberMember
35
(@user187201)

Posted : 02/12/2013 9:26 pm

I agree. I hope they take it off the market everywhere, what really scares me is the whole cell/DNA theory with accutane. Do you guys believe it can cause cell damage? It's already been years since it gave me psuedotumor cerebri. Now I'm going bald, by now I would almost assume these things are permanent.

That wont happen - they have not even done research into the horrific long term side effects, doctors in reality know nothing about this insidious drug, they are still of the opinion it is the 'golden standard' for acne treatment despite the devastation it has the potential to cause the and there is no way the FDA in the US or the TGA in Australia. As long as this happens lives will continue to be destroyed.

I am trying to do everything in my power to bring attention to the nightmare.

Im in the same boat - I want to be a mum, how the hell can I make that happen and put my baby at risk of any potential issues when its clear It is still in me doing damage to every part of my body inside and out...this is beyond devastating

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MemberMember
7
(@09eric09)

Posted : 02/12/2013 9:36 pm

I feel your pain, it's just hard to deal with when we have close to nothing as far as answers. I'm just so angry at myself for worrying so much about my acne. I would have never traded a clear face for this shit.

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MemberMember
35
(@user187201)

Posted : 02/12/2013 10:29 pm

I feel your pain, it's just hard to deal with when we have close to nothing as far as answers. I'm just so angry at myself for worrying so much about my acne. I would have never traded a clear face for this shit.

Me too man, I was never warned of long term anything...I'll pray for you whats your name?

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MemberMember
7
(@09eric09)

Posted : 02/12/2013 10:41 pm

I feel your pain, it's just hard to deal with when we have close to nothing as far as answers. I'm just so angry at myself for worrying so much about my acne. I would have never traded a clear face for this shit.

Me too man, I was never warned of long term anything...I'll pray for you whats your name?

My name is Eric, how about yours? I will keep you in my prayers as well. Hopefully one day we will find out something in regards to stopping all of this.

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MemberMember
35
(@user187201)

Posted : 02/12/2013 11:54 pm

I feel your pain, it's just hard to deal with when we have close to nothing as far as answers. I'm just so angry at myself for worrying so much about my acne. I would have never traded a clear face for this shit.

Me too man, I was never warned of long term anything...I'll pray for you whats your name?

My name is Eric, how about yours? I will keep you in my prayers as well. Hopefully one day we will find out something in regards to stopping all of this.

My name is Shelley. We have chronic inflammation coupled with cellular dehydration adn impaired circulation..Im searching for an answer every day.

This is all my life has become. If I can help myself, I want to help you too.

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MemberMember
7
(@09eric09)

Posted : 02/13/2013 12:32 am

I feel your pain, it's just hard to deal with when we have close to nothing as far as answers. I'm just so angry at myself for worrying so much about my acne. I would have never traded a clear face for this shit.

Me too man, I was never warned of long term anything...I'll pray for you whats your name?

My name is Eric, how about yours? I will keep you in my prayers as well. Hopefully one day we will find out something in regards to stopping all of this.

My name is Shelley. We have chronic inflammation coupled with cellular dehydration adn impaired circulation..Im searching for an answer every day.

This is all my life has become. If I can help myself, I want to help you too.

Thank You, it's very nice to meet you Shelley. Remember, we must keep a positive attitude about this.

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MemberMember
35
(@user187201)

Posted : 02/13/2013 12:53 am

 

http://www.change.org/petitions/tell-roche-pharmaceuticals-give-us-the-truth-about-accutane#share

Pls sign this petition - the communications director called me personally today and is going to manage media exposure to help from as many angles as possible.

Pls spread the word via any social media possible - Im even posting this on my Instagram.

 

 

Its hard to retain any kind of positive attitude when your where I'm at - best I can do is go on a rampage to destroy Roche and have this drug recalled - reposrt it to your therapeutic goods administration body, your health care commission, report your side effects to Roche they HAVE to document it - they are digging their own grave - not just ours....

http://www.tga.gov.au/DAEN/daen-report.aspx

Strength in Numbers...

Lets get the honest truth out there and HEARD and hope to fuck we can somehow heal over time....

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MemberMember
10
(@lillyrose7)

Posted : 02/13/2013 1:32 am

one dermatologist actually laughed at me, and put me down when i said i didn't want to take it and it damaged you long term. She said they are all reversable side effects (REALLY ?!) and its only harmful to a baby if you take it. She was full of bullshit and always seemed to have a hunch over me because i refused to take it. She was insulting a few times. I have since told her what i think of her and walked out. Some doctors don't inform you of the side effects, they just don't care. Its difficult to find a very trusting and caring doctor. My other derm is so understanding and transparent about side effects and always respected my decision not to take it. I dont' think the trade off to clear skin is worth it, because all these things are popping up years later. How will you ever know if its linked to accutane use?

its an expensive med, they are making so much money out of it its really terrible.

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MemberMember
7
(@09eric09)

Posted : 02/13/2013 1:46 am

one dermatologist actually laughed at me, and put me down when i said i didn't want to take it and it damaged you long term. She said they are all reversable side effects (REALLY ?!) and its only harmful to a baby if you take it. She was full of bullshit and always seemed to have a hunch over me because i refused to take it. She was insulting a few times. I have since told her what i think of her and walked out. Some doctors don't inform you of the side effects, they just don't care. Its difficult to find a very trusting and caring doctor. My other derm is so understanding and transparent about side effects and always respected my decision not to take it. I dont' think the trade off to clear skin is worth it, because all these things are popping up years later. How will you ever know if its linked to accutane use?

its an expensive med, they are making so much money out of it its really terrible.

That's the frustrating part about it, is there hasn't really been that much research on this drug. And you're right, most dermatologists are not even going to listen, especially the ones that have prescribed it to patients.

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