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#15363 - 12/27/04 10:34 PM any positive posts from Accutane?
alaynec Offline
Junior Member

Registered: 12/27/04
Posts: 1
Loc: new orleans, la, usa
Hello~

I have read the boards about all the terrible side effects of taking Accutane. Every person I have talked to in person has said that it has worked wonders for them - no major side effects but dry skin/lips. No one I have talked to has said they've gotten long-term side effects from it either.

So I started the drug on Dec. 16. I haven't noticed any improvement - only the dryness so far. I am hoping that someone out there has some positive experiences with Accutane and can share them.

I was seeing my dermatologist for 4 months and nothing else was working (creams, tazorac (sp), retin A, differin, antibiotics, etc.). She asked what I thought about taking Accutane and I said "sure". I am getting married in June 05 and want to have a clear complexion for the wedding. I have not always had bad skin - just within the last 12-18 months has it gotten bad.

A few questions:

1 - I take a prenatal vitamin every day (helps with skin/hair/nails/etc.) and have for years. It contains Vitamin A. My derm. said it was still OK to take the prenatal vitamins while on Accutane. What do you think? I insist on taking a combo vitamin every day - I think it helps me overall.

2 - What exactly is Accutane doing to my liver? Am I not supposed to take any other medication while on the drug (precription headache medicine, valium, pain medication, etc.)?

3 - What have you experienced as long-term side effects of taking the drug?

4 - What can you share about drinking alcohol while taking Accutane? I am not a big drinker, but with my job, we have to entertain a lot. I have to at least have a drink with clients. Is this OK? How much it too much? I might drink about 1-2 days out of the week and about 5 drinks total.

4 - I read in my pamphlet that I should only wait for at least one month after taking accutane to stop using 2 methods of birth control. Why have some of you said you have waited 2-5 years to start trying to have kids??

5 - Please someone share some GOOD experiences you have had with the drug. Perhaps only ones with negative experiences have had the urge to read/write about it online....??? (Like if everything is going well, you probably wouldn't write about it online?)

Thanks in advance to anyone taking the time to respond to me. Have a Happy New Year!

alayne
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alaynec

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#15364 - 12/29/04 10:09 AM Re: any positive posts from Accutane?
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Alayne:

Gee these drugs cause such mixed emotions in us all, and yes they are miraculous for our skins...

The trouble is some people have more fragile versions of Ichthyosis, and these are the people who write bad immediate results...

However, the people who's skin is not so fragile deeper down in the layers, can tolerate these drugs, and find that it is fantastic for them, and rightly they continue taking them, and recommend them to others...

I was absolutely besotted when I started taking Tigason, different but related drug...my skin was as clear as a baby's bottom...and at the time I saw these drugs as 2nd to a total cure...

However, many of the side effects are hidden, and not evident until many, many years later...such as bone and muscular pain, and reduced mobility...

The reason that the drugs have such a long clearing time from the body before having children, is because the high doses of Vitamin A (which is what these drugs comprise of, I think this also applies to Accutane) take years to leave the body, and this is important because babies can be born with deformities, such as missing limbs...

High doses of Vitamin A are toxic to our liver, and can cause it to malfunction, as is what happened to me when I was a teenager...

I wish you luck in your decision, it is not an easy one, and I just know how heartbroken when I had to accept that I could not continue taking these drugs...

I took them from 1978 until 1986...and the internal side effects are only just showing now (within last 12 months or so)...

So that is probably why, many people are not mentioning these to you, because they haven't presented themselves yet...

Sorry this is not more positive, like you requested, but you are dealing with more than a skin condition, (longterm health).

Pauline,
Have a nice New Year also

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#15365 - 12/30/04 03:17 AM Re: any positive posts from Accutane?
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
Accutane just recently got on the list to be banned. Please be careful while your taking it. Make sure you get your blood work done. It can affect your bone mass so in the future make sure you mention it to doctor. You should start to feel better with in 4-5 weeks. My skin looked normal while on it but I wish I had never taken it. I had several problems arise one was my corneal abrasions and now I'm not sure if it's related my fertility problems. Rethink if it's worth it. I once had someone metion this to me and still I did not listen and now I'm in the same boat. Remember this can also play havoc on your liver so get that checked.

Good luck
[img]http://www.ichthyosis.com/ubb/smile.gif[/img] sofia

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#15366 - 01/04/05 02:51 PM Re: any positive posts from Accutane?
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Most of this has already been said, but it's good to hear it from many people. Accutane is a tricky thing. On the positive note it made my skin incredible looking and daily life tons easier. I was on it 15/16 years. My bloodwork was always normal so I was never sent for X-rays to see if my bones were changing (which is irreversible). It wasnít until near a couple of years before finally making the choice to get off it did I notice the side effects (lots of joint pain, stomach problems, IBS which I've read is related to Accutane, bone spurs in my neck, etc). And to be honest, I would have stayed on it longer if I didnít feel anything. But in many ways that was a blessing in disguise.
For short-term use I think this drug is very beneficial to people, not just us but for what it was intended for (severe acne). The problem is that things are happening in the body that may not manifest itself for years later, when nothing can be done to correct it. I too was told taking multivitamins with Vitamin A was fine and did that for years (even did the prenatal vitamin briefly). That information is wrong. You are definitely adding stress to your liver. I cringe at some of the information so-called doctors told me over the years.
And I also drank alchohol. I started taking Accutane when I was 16 and shortly after started college and parties came with that. I was NEVER told not to drink, which again makes me cringe. Iíve read that alcohol causes the retinoids to remain longer in the body (something to do with the half-life). So you may want to look into that a bit further if you intend on staying on Accutane for a longer period.
As for having babies. Iíve been told by a dermatologist that one month after being off Accutane is fine. Another dermatologist told me to wait 6 months since I was on it so long. The actual manufacturer (Roche) said I could get pregnant after one month. The problem with all that is that if the drug does stay in the body (fat cells) then it WILL affect the baby. The drug gets out of the blood quickly. That is why after one week the skin is horrible because there is no more medicine to Ďfix ití. But it is documented that Accutane does horrible things to a fetus (enlarged head, missing limbs, etc. I remember it being on the package insert, but can't remember all the malities right now.) I have been off it for a drop under 2 Ĺ years and am just now starting to try and get pregnant. So if you plan on trying to start a family shortly after you get married again you may want to rethink your choice.
See the thing here is that when I started this medicine there wasnít as much known about it and this site certainly wasnít here. You are in a prime position to have all this personal information given to you. And if all youíre hearing is negative stories, take that as a warning. Some good things do come at a cost.
Oh, and even though I was on this medicine for so long, I went off it 9 months before my wedding. In my photos I am a bit red and shinny ... but healthy. Thatís worth everything.

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#15367 - 01/06/05 05:40 PM Re: any positive posts from Accutane?
AngV Offline
Member

Registered: 11/27/04
Posts: 23
Loc: Sartell, MN
Hi, I was on Accutaine from ages 17-21 but my derm only left me on it for 6 months max then I was off again. I usually took it in the summer. I started off on 20mg three times per day and the last time I took it I was up to 40 mg three times per day and the results were not as good as when I first started. So I think for the short time it does great but the more I used it the less effect it had on me. I was pretty lucky and did not have many side effects. It took a good 5-6 weeks before the skin looked good and in the beginning it was really bad. I dried up even worse and my eyes were dry and so were my lips, the skin peeled away from around the mouth and I looked pretty bad for about a week but then it worked great. The only other side effect I experienced was back spasms. I am now 31 years old and sometimes I still get that twinge in the lower back - who knows it could be from the accutaine! As for children i have always been told I had to wait 2 months after being on it to try to get pregnant. With my first son it was about 6 months after my last pill and he was perfectly normal. But as I got older the risks overweighed the benefit for me and I have not been back on since. Now, my 3rd son has EHK also and that will be his choice whether he wants to take the meds when he is old enough (now only 9months) but i would not encourage or discourage anyone - its a very personal choice. I know if I was a teenager again I would definetly get on them again because I was just not comfortable with who I was then and luckily I am now. I know how you feel about the wedding though - that was the last time I took the accutain right before my wedding and my skin looked great. Good luck with everything.
Angela
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#15368 - 04/05/07 02:43 AM Re: any positive posts from Accutane?
fredgt28 Offline
Junior Member

Registered: 04/04/07
Posts: 1
Loc: Caracas Venezuela
I was just wondering. I took accutane for acne problems, but it doesnt seem like people on these boards are taking it for the same reason. I want to know, if people on these board take it for a long period of time continuously? I mean there are no pause and takes years taking it. If so, is it when practice like these there are considerate side effects? Im taking it again the third time but i only took it for a 5 month period. Are you guys taking it on a year to year basis? If so, are these when there are considerable consequences?

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