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I was put on Accutane when it had only been on the...
I was put on Accutane when it had only been on the market for 5 years, so it was relatively new. This was in 1993 at the age of 19. After battling years of severe cystic acne (acne started in 4th grade for me and by 15 it was on my face, chest and back), so I finally sought out professional help.
I was first put on Tetracycline with Benzac W5 and Erythromycin. Then Minocycline took the place of Tetracycline, and then Minocycline with birth control (even though I wasn't sexually active) and then my derm told me about Accutane. She gave it rave reviews but told me it "could" cause hair loss. But she said, the good news is you have so much hair that if you noticed any coming out you just stop treatment and it will stop falling out." I thought that was worth it being my hair was thicker than anyone's I'd ever met. Pretty much, when I'd wrap my fingers around my hair it would be if you take your thumb to your middle finger, and the first 1/2 of the nail was covered, that's how big my ponytail was. She had told me about a patient that went bald, which scared me, but she said she had really thin hair to begin with. For me I thought I had enough hair to take a chance and rid myself of acne that had plagued and scarred my face and body.
I was taking 40 mg and yes you have to have regular monthly blood work to make sure your liver is functioning. That's a HUGE warning sign to not take something if it can internally cause damage to your organs. But at 19, I just wanted clear skin.
My skin got better. It never was 100% clear. I still had, what is called "superficial acne". Little pimples that people get that clearisil can clear up. The cystic acne was gone. I had lost some hairs at my temples that use to frizz and now were gone and that area was tame. I thought it was a win-win! Not until a couple of months later did I notice my hair continuing to fall out and my pony tail getting smaller.
I notified my doctor and she said it is temporary and will regrow and not to be alarmed. After 6 months it continued to fall out. I called her again and she said after 6 months, it won't grow back. I was seriously freaking out. My ponytail ring went from what I stated above to now my thumb would go down past my middle fingers top bend.
I then contacted Roche and told them what was going on and said that my doctor said there's a rare chance you could suffer hair loss. Something like a 2% chance and the woman I talked to from Roche said to me, "We get thousands of complaints weekly about hair loss". I about DIED!!! Here I was, 20 yrs old and my hair was falling out and I had no way of stopping it.
I went to doctors but they laughed at me because my hair was still thicker than most people but that wasn't the point. The point was, at this rate of it falling out and not growing back, I'll be bald within the next 10 years. NOT GOOD!!!
I had my thyroid checked, and nothing. I met a hairdresser who told me her daughter went bald from taking Tetracycline. She got into herbal remedies and put her on horsetail and got her to regrow her hair. I started on that when I started going to her. I finally was able to get my hair to stop. I may have grown back a small amount but I was more thrilled about it stopping the fall out.
It stayed pretty consistent after a few years and then I'd notice more hair fall, which then thinned my hair. At that point I had lost 1/2 of the hair I had and now, for the last 2 years I've lost another 1/3. Now when I wrap my fingers around my hair to make a ponytail it's only my thumb to my index finger knuckle. That's how much hair I've lost. The worst part is now you can see my scalp through my hair.
My hair was the one feature on me that EVERYONE has always complemented me on. It's everything to me. My hair makes me attractive. To lose the ONE feature that was literally where my beauty was is beyond words. I've been beyond sick inside for nearly 20 years now. I've told everyone not to EVER go on that medication. And everyone I know who's ever gone on it, has also lost hair. My friend from college went bald as well. At least he's a guy though. Still, he was upset about it.
But I'm lucky, because I saw lots of lawsuits on it for causing Gastrointestinal problems and such worse things that others have had to suffer than hair loss. It doesn't make my problem any better but I'm at least grateful because it could've been so much worse.
And, needless to say, 3-4 years later (at 23-24) my acne came back and worse than ever in area's I never had acne. Was it worth taking Accutane, most definitely NOT!!! I'm now 38, still have acne and 1/3 of the hair I once had.
I've been to dermatologists, gynecologists, trichiologists (hair and scalp specialist who also told me I don't have alopcia after doing a pull test and looking at my follicles under a microscope), and have done a fair amount of research on natural methods of vitamins and herbs. They seem to be the best thing. At time's I've been able to grow some hair but the last 2 years it's been a complete mystery.
Nioxin didn't work for me. I've tried everything. If I can give any type of advice I'd say to stay away from shampoos that have Sodium Laurel Sulfate. That can damage your hair follicles among many other things. Try looking into more natural shampoos. Although I talk about my hair thickness in "ponytail" terms, I never wear a pony tale. My hair is too heavy and wouldn't stay up and always hurt my scalp. That was good because you can also get hairloss from tightly tying your hair back and having it pull on the follicle. That's called Traction Alopecia. So any pulling and tugging is not good.
There's so many things I could say but to all who are suffering the same problem, know you're not alone. I hope this helps someone.
P.S. Since I was treated nearly 20 years ago, I don't remember the cost. So I couldn't submit this until I put in a cost. It's not the true amount and it would be outdated being it was 20 years ago.
I was first put on Tetracycline with Benzac W5 and Erythromycin. Then Minocycline took the place of Tetracycline, and then Minocycline with birth control (even though I wasn't sexually active) and then my derm told me about Accutane. She gave it rave reviews but told me it "could" cause hair loss. But she said, the good news is you have so much hair that if you noticed any coming out you just stop treatment and it will stop falling out." I thought that was worth it being my hair was thicker than anyone's I'd ever met. Pretty much, when I'd wrap my fingers around my hair it would be if you take your thumb to your middle finger, and the first 1/2 of the nail was covered, that's how big my ponytail was. She had told me about a patient that went bald, which scared me, but she said she had really thin hair to begin with. For me I thought I had enough hair to take a chance and rid myself of acne that had plagued and scarred my face and body.
I was taking 40 mg and yes you have to have regular monthly blood work to make sure your liver is functioning. That's a HUGE warning sign to not take something if it can internally cause damage to your organs. But at 19, I just wanted clear skin.
My skin got better. It never was 100% clear. I still had, what is called "superficial acne". Little pimples that people get that clearisil can clear up. The cystic acne was gone. I had lost some hairs at my temples that use to frizz and now were gone and that area was tame. I thought it was a win-win! Not until a couple of months later did I notice my hair continuing to fall out and my pony tail getting smaller.
I notified my doctor and she said it is temporary and will regrow and not to be alarmed. After 6 months it continued to fall out. I called her again and she said after 6 months, it won't grow back. I was seriously freaking out. My ponytail ring went from what I stated above to now my thumb would go down past my middle fingers top bend.
I then contacted Roche and told them what was going on and said that my doctor said there's a rare chance you could suffer hair loss. Something like a 2% chance and the woman I talked to from Roche said to me, "We get thousands of complaints weekly about hair loss". I about DIED!!! Here I was, 20 yrs old and my hair was falling out and I had no way of stopping it.
I went to doctors but they laughed at me because my hair was still thicker than most people but that wasn't the point. The point was, at this rate of it falling out and not growing back, I'll be bald within the next 10 years. NOT GOOD!!!
I had my thyroid checked, and nothing. I met a hairdresser who told me her daughter went bald from taking Tetracycline. She got into herbal remedies and put her on horsetail and got her to regrow her hair. I started on that when I started going to her. I finally was able to get my hair to stop. I may have grown back a small amount but I was more thrilled about it stopping the fall out.
It stayed pretty consistent after a few years and then I'd notice more hair fall, which then thinned my hair. At that point I had lost 1/2 of the hair I had and now, for the last 2 years I've lost another 1/3. Now when I wrap my fingers around my hair to make a ponytail it's only my thumb to my index finger knuckle. That's how much hair I've lost. The worst part is now you can see my scalp through my hair.
My hair was the one feature on me that EVERYONE has always complemented me on. It's everything to me. My hair makes me attractive. To lose the ONE feature that was literally where my beauty was is beyond words. I've been beyond sick inside for nearly 20 years now. I've told everyone not to EVER go on that medication. And everyone I know who's ever gone on it, has also lost hair. My friend from college went bald as well. At least he's a guy though. Still, he was upset about it.
But I'm lucky, because I saw lots of lawsuits on it for causing Gastrointestinal problems and such worse things that others have had to suffer than hair loss. It doesn't make my problem any better but I'm at least grateful because it could've been so much worse.
And, needless to say, 3-4 years later (at 23-24) my acne came back and worse than ever in area's I never had acne. Was it worth taking Accutane, most definitely NOT!!! I'm now 38, still have acne and 1/3 of the hair I once had.
I've been to dermatologists, gynecologists, trichiologists (hair and scalp specialist who also told me I don't have alopcia after doing a pull test and looking at my follicles under a microscope), and have done a fair amount of research on natural methods of vitamins and herbs. They seem to be the best thing. At time's I've been able to grow some hair but the last 2 years it's been a complete mystery.
Nioxin didn't work for me. I've tried everything. If I can give any type of advice I'd say to stay away from shampoos that have Sodium Laurel Sulfate. That can damage your hair follicles among many other things. Try looking into more natural shampoos. Although I talk about my hair thickness in "ponytail" terms, I never wear a pony tale. My hair is too heavy and wouldn't stay up and always hurt my scalp. That was good because you can also get hairloss from tightly tying your hair back and having it pull on the follicle. That's called Traction Alopecia. So any pulling and tugging is not good.
There's so many things I could say but to all who are suffering the same problem, know you're not alone. I hope this helps someone.
P.S. Since I was treated nearly 20 years ago, I don't remember the cost. So I couldn't submit this until I put in a cost. It's not the true amount and it would be outdated being it was 20 years ago.