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#15155 - 05/31/01 11:25 AM Re: Accutane Long-term Side Effects
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
I have been following this topic and as someone taking Accutane for over 13 years and wanting to have children within the next few years, I am concerned. So I called Roche (makers of Accutane) and explained what I had read - especially inquiring about how alcohol changes the drug in the body and how long would I have to wait before having children, etc. The nurse on the phone read from literature that there is no sign of Accutane in the body after one month and that alcohol doesn't affect the drug. I asked how accurate this information was and he said they are the makers of the drug and have spent a lot in research to learn about it. He said to take what is read on the Internet with a grain of salt.
Now who knows if he wasn't being truthful because they want to sell the drug, but he is sending me the literature so I can see it myself.
I don't plan on going off this medicine until absolutely necessary. It has worked incredible wonders for me. But I just wanted to add to the puzzle.
Lisa Marie

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#15156 - 06/19/01 06:54 PM Re: Accutane Long-term Side Effects
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Lisa Marie,

Did that guy at Roche ever send you the materials? What did they say?

Roche makes BOTH Accutane and Soriatane. The British Journal of Dermatology is, as far as I know, a legitimate source to publish legitimate scientific research (I wouldn't lump it in there with the rest of the stuff on the internet whose source and authenticity is unknown). According to the research published in the British Journal, there absolutely IS an issue with Soriatane, alcohol consumption, and how long it stays in your body. So I'm kind of surprised that the nurse didn't address that (it doesn't seem like much of a reach to me that there might be a similar issue with Accutane and they are the makers of both of them).

The nurse also said about Accutane that "alcohol doesn't affect the drug"? That's not my understanding. There used to be warnings all over the place recommending that you not consume alcohol at all when on Accutane, or at least significantly reduce your alcohol intake. This doesn't run toward alcohol affecting fat storage, but neither did the nurse's comment. He just said "alcohol doesn't affect the drug." I don't believe that.

I totally understand that you don't want to go off the drug before you have to, and neither do you want to endanger your future children (once you start trying to conceive), but I personally wouldn't find the information from this nurse particularly reassuring. Not to say that he was wrong, just that he didn't come off as being very expert in this area, to me.

Are you going to be in Seattle for FIRST's conference? I think that would be the best place to ask the question, of how Accutane and Soriatane differ on this issue. I'll see if I can have any luck getting it on the agenda ahead of time.

Laura

[This message has been edited by Laura Phillips (edited October 10, 2006).]

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#15157 - 06/19/01 07:08 PM Re: Accutane Long-term Side Effects
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Okay, this was really buggin me, so I went out to Roche's site and read the full prescription info for both Accutane and Soriatane.

Much to my wondering eyes, NO mention of alcohol was made in the Accutane materials.

However, in the Soriatane materials, the following appears: "Females of reproductive potential should also be advised that they must not ingest beverages or products containing ethanol while taking Soriatane and for 2 months after Soriatane treatment has been discontinued. This allows for elimination of the acitretin which can be converted to etretinate in the presence of alcohol. " And later: "Alcohol intake can cause Soriatane to be changed into a related drug, etretinate, which may not leave the body for many years."

Also, the Accutane literature said you could donate blood within a month of stopping Accutane. Soriatane says you have to wait three years. (Same for pregnancy--wait a month for Accutane, 3 years for Soriatane).

So, seems to me like there must indeed be some significant chemical difference between Accutane and Soriatane (though I'm still not smart enough to have found exactly what the difference is). However, based just on the above factors, seems like I would still choose to take Accutane and not Soriatane (how is it safer when Roche's materials make it sound like alcohol effects Soriatane but not Accutane)?

I think I'm more confused now than ever. [img]http://www.ichthyosis.com/ubb/rolleyes.gif[/img]

Don't listen to me, Lisa Marie! I don't know what I'm talking about!



[This message has been edited by Laura Phillips (edited June 19, 2001).]

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#15158 - 06/20/01 10:56 AM Re: Accutane Long-term Side Effects
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Laura,
I've decided to go off Accutane for now. I have never been off it in 13/14 years, so I think it's time.
As for Roche - they told me that Accutane isn't affected by alcohol and that I only need to be off it one month before I try and conceive. The papers that were sent to me didn't say anything about alcohol at all.
As for Soriatane - it stays in the body forever somehow. My doctor told me I would never be able to conceive then because it would definitely harm the baby. I could only take it after I'm finished having children. Something to that effect.
I'm curious and very nervous to see how my skin becomes without the medicine, but I think it is for the best.
Thanks for all your advice.
Lisa

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#15159 - 06/20/01 12:13 PM Re: Accutane Long-term Side Effects
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Well, clearly, most lay people have a hard time distinguishing Accutane from Soriatane (count me in!). Somehow Soriatane, maybe just because it's newer, has the reputation as being "safer" than Accutane (some kind of improvement over Accutane).

I'm wondering if Soriatane isn't really meant to be an improvement over Tegison (and actually have much more in common with Tegison). Roche took Tegison off the market. Tegison was etretinate, which is fat stored in the body for ages (I don't remember what the half-life is, but the thinking was that women who ever wanted to have children shouldn't take Tegison as no one really knew for sure how many years it would take for the etretinate in your body to degrade to a low enough level not to effect your baby...if ever). Roche's materials and that study refer to Soriatane being metabolized as etretinate in the presence of alcohol (essentially, your body would convert your Soriatane into Tegison). Maybe that's what your doctor was linking together when he said that woman shouldn't take Soriatane if they ever wanted to have children (assuming that the overwhelming majority of people do consume some alcohol, however little that might be).

I'd totally trust the Roche literature and your doctor, if they say you only have to be off Accutane for a month before conceiving. Especially in our overly litigious society today, none of them could afford to make a mistake on that!

Best of luck when you try going off Accutane. You might be surprised--your skin might not be as bad off Accutane as you think it might.

Laura

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#15160 - 06/22/01 02:21 AM Re: Accutane Long-term Side Effects
5297 Offline
Member

Registered: 09/28/00
Posts: 21
Loc: janesville Wi USA
hello boy everyone is scaring me about soriatane i have been taking it for 6 months now i have EHK and two children one that has it and one that does not! I was'nt sure if i ever wanted another kid i sort of do but now i'm scared to death with what everyone is talking about that you can't have kids ever again! The alcohol thing is really confusing also i have drank with this medicine but not much i guess i just don't understand. I was on accutaine before but that just mostly did my hands and face soriatane does my whole body you can bearly tell i have a disorder and before i was covered in very thick scales from head to toe. I feel so good when i look in a mirror now but not i'm so scared and nervous to what everyone is saying!


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#15161 - 06/22/01 05:20 PM Re: Accutane Long-term Side Effects
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
5297--

Please don't be scared to death about Soriatane. Did you read the study that I posted about Soriatane and alcohol? It said if you had consumed alcohol while taking Soriatane, a two year wait would be sufficient before trying to conceive. Roche's literature says wait three years, which seems appropriately conservative (a study indicates two years is adequate, just to be safe, they recommend three years?). I've not seen anything that says you need to wait any longer than three years with Soriatane.

If you're worried about it, talk to your doctor about it, or call Roche and talk to them, or do both. Please don't rely on things that are posted here as your only source of information (I for one have already said I really don't know what the difference between Accutane and Soriatane is...I've never taken Soriatane, only Accutane).

But again, I've not seen anything authoritative that contradicts in any way the 3 year wait that you said your doctor originally advised you of.

Laura

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#15162 - 07/03/01 04:15 PM Re: Accutane Long-term Side Effects
Helene Offline
Junior Member

Registered: 07/03/01
Posts: 1
Loc: denmark
Hi all!
im new here, and from Denmark, so please dont
take any notice of the spellingmistakes!
I have been taking neotigason for the last ten years, and i have not eksperienced any sideeffects. My skin feels softer and the scallings is not so bad. I have spoken to my docter, and he ecsplained to me that women have less sideeffects, maybe because of the fatlayer... so it can actually come in helpfull...

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#15163 - 07/07/01 04:14 PM Re: Accutane Long-term Side Effects
ali Offline
Junior Member

Registered: 07/07/01
Posts: 1
Loc: San Francisco, CA USA
Hi,
Several of you have posted that you took accutane in the 80's as part of a trial. I am hoping you might have some information I need. I, as are many other people, am experienceing dramatic hair loss after taking accutane and am being told it is heredity by my dermatologist. I have lost about 70% of my hair all over my head. A lot of people are struggling with this and we know we are just the unfortunate 'rare' cases of hairloss that the package mentions. I am looking for anyone who has taken accutane years ago and experience hair loss AFTER stopping the drug. If you had this experience, please let me know what the outcome was. Did you ever grow your hair back, did the shedding ever stop? Did anyone (women) lose enough hair to need a wig or hair piece? I am hoping my hair will straigten itself out eventually (I've been off accutane for a year), but if that isn't going to happen I'd like to be realistic. Thank you very much in advance. If you don't want to post here, let me know and I'll give you my email address.
_________________________
Ali

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#15164 - 07/08/01 07:44 PM Re: Accutane Long-term Side Effects
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
With regards to what Laura mentioned about donating blood...Roche says in all their literature you can eventually donate blood after being off the drug, but I have yet to find a blood donation center that will take blood from you if you have EVER, even once, taken Accutane or Soriatane.
I know you were just quoting, so don't think I am jumping you [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
I just find it an interesting conflict that Roche thinks it's ok to donate blood, but no one wants it.

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