Accutane And Infertility (Page 23)

I took accutane almost 14 years ago as a teenager. I am now a 32 year old woman who has just been diagnosed with infertility that they believe is linked to autoimmune issues. I truly believe that accutane is the cause of this; from the research that I have done it seems that accutane has been linked to other thyroid-related diseases, but that they have not yet been able to prove a link between accutane and infertility. There are, however, actually more people like me out there than I originally thought. Being diagnosed with ovarian dysfunction has been a horrific, horrific blow. And while there was plenty of information about accutane and birth defects, no one ever mentioned a possibility of future infertility. I was a teenager! This is a tragedy and I believe something should be done about it. If you too have been affected diagnosed with infertility and have taken accutane, please email me. There are plenty of suits against accutance. If there are enough of us, we can come together to do the medical research and get the help we now need.

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Hi Sara,

I recently became aware of the link of taking Accutane and premature ovarian failure. It is a very potent drug. I heard it was taken off the market, but I was not sure why. I took a 3 month course of Accutane when I was 28. Same as you, I knew about the severe birth defects that could occur if one was pregnant while taking it. I was fed up with still having acne at 28. I started going through peri-menopause at age 34. At age 35, I got pregnant, but my baby died in utero at 36 weeks.. After this, I only had four more periods and then my periods stopped completely. I was diagnosed with POF. The devastation was overwhelming. I was only 36. This happened many years ago so the statute of limitations may be up for me. I am 55 now. My husband and I decided to adopt and I now have two beautiful daughter's. They are 13 and 17. It took me a long time to get over the fact that I could not have a biological child and my only bio-baby had died.

Going through POF is very difficult and other people don't understand your grief. It was hard too, because family members and friends that were older than me, where able to have children and it was not fair. Accutane did not cause my baby's death. But indirectly, the pain of that loss combined with finding out that I would not be not able to get pregnant again with my own egg, was devastating. There is hope to heal and form a family after POF eventhough of course, its not your first choice. I chose adoption because I just could not get comfortable with donor egg. I hope this helps. Good Luck. As far as a legal suit, its been many years for me, and I don't want my daughters to feel like they are not enough.

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I would like to be informed if any legal suit is going to take place. I also took Accutane and have infertility. 35 years old. Thank you!

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Accutane has been off the market in USA since 2009, so the statute of limitations has run out

New legal suits would not be possible, in fact that is why Roche left the US market.

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The most important question is whether all these issues are more common in severe acne patients treated with isotretinoin than in comparable patients not treated with isotretinoin. It may even be less common in isotretinoin treated patients.

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I also took Acutane as a teenager and ended up having to have ivf to get pregnant....

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The ONLY question that needs to be answered regarding Isotretinoin/Accutane and infertility is "Can Isotretinoin cause, or contribute to, infertility in certain patients?" It either does or doesn't. The answer won't be found in statistical reports.

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The answer will never be known. Can it cause infertility in some patients, can it cure infertility in some patients?

How will anyone answer that question?

All we can go on is statistics unless the mechanism is known and there is a test for whether one is susceptible.

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Doing a survey is a good idea. I will keep that in mind as a possible project. I am a researcher at university but I work in an entirely different field. Perhaps there is someone on this forum in a medical field who would want to undertake a survey to see if there are is an obvious relationship in terms of numbers of people affected by fertility issues and those who took isotretinoin.

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I personally know 5 people who have taken Accutane. All of them are infertile. The two males have very low sperm count and motility. The three females are infertile due to premature ovarian failure. Oh, and the males are completely bald and the females have very thin hair. All of them noticed losing their hair either while on the treatment or within one month of ending treatment. Coincidence? I think not. I cannot believe this drug is legal and dermatologists are ignorant for handing out such a detrimental drug for something as mild as acne. Wake up derms! You are ruining so many lives.

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All 5 sound like they have severe androgen excess and that causes the hair loss, ovarian failure and of course caused the severe acne that required Accutane.

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The question of whether there is a causal relationship between Isotretinoin/Accutane and infertility could easily be answered if there was incentive to look. The technology exists to do so, but the potential harm being done is ignored and downplayed. If you are someone who believes they were rendered infertile by the drug, then raise bloody hell over it.

Notice the data from a large pharmacogenetic study has suggested a link between certain variations of the retinoic acid receptor gene and certain adverse effects: - "THE EFFECT OF GENETIC POLYMORPHISMS OF RARA GENE ON THE ADVERSE EFFECTS PROFILE OF ISOTRETINOIN-TREATED ACNE PATIENTS"

It's a cop-out to continually be told "the effects of Isotretinoin are beyond comprehension; therefore, a causal relationship cannot be established and one does not exist." Let the whole of dermatology put their abundance of money where their mouths are and disprove the causal link through solid science before refuting the claims of post-Isotretinoin patients.
Until then, it might just be the Isotretinoin.

Bottom line:

-It is possible to determine if there is a causal link. There are already multiple observations of significant hormonal antagonism in a majority of patients and evidence of a negative influence of Isotretinoin on female reproductive cells.

-It is possible to develop (relatively inexpensive) kits to check for individual susceptibility to certain adverse reactions.

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No, I did not have androgen excess and the two males did not either. I guarantee you that the other two females did not have hyperandrogegism. I had three pimples and was given Accutane. Also, the other four people had mild acne as well. The dermatologists prescribe this drug way too often. Heck, one time of prescribing this drug is way too often. The dermatologists are clueless and don't know how this drug works. My derm just said it will clear up pimples by reducing sebaceous glands and basically it is just like vitamin A and no side effects will be permanent. Well, 5 years later and I guarantee you that my side effects are permanent. My hair is dry and falling out like crazy. I have low libido, genital numbness, dizziness, joint/muscle pain, GI tract problems, deep skin wrinkles, tinnitus, back pain, and a whole bunch of other issues. Do not tell me it is not isotretinoin. Most of these symptoms started during the course while the rest hit me one month after stopping the drug. It is unbelievable that this drug is given out for acne. This drug damages your health. Acne does not.

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It seems statistically unlikely that 5 of you received Accutane for 3 pimples and all suffered the worst possible side effects. And that you all found a dermatologist willing to prescribe Accutane so far off label that no insurance company would cover it.

And severe acne does kill, suicide for example. Severe acne scarring can be psychologically devastating.

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Wow, I smell a dermatologist defending Accutane like it's her baby. You don't seem to understand. I had 3 pimples, the others had mild acne, and I am the one suffering with so many permanent side effects. The four others are just suffering from infertility and hair loss. We all were prescribed the drug for mild acne and yes, the insurance did cover it for all of us. I didn't say anything about acne and suicide. I said the drug damages your health not acne. But if you want to bring up suicide, Accutane causes a very deep depression. It messes with your mind and body in a way that is so difficult to understand unless you experience it yourself.

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I do understand, I just don't believe it.

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OMG, I am shocked. I am 23 and just found out I am going thru premature menopause. I took this crap 4 years ago. The endocrinologist asked if I ever took Accutane, and said he sees this happen in young patients who took it! WTF, I still have the side effects booklet and it says nothing about menopause. I would much rather have acne than to have to deal with this! It feels like my life is over. I can't stop crying about this. I had no idea it is being used for cancer. Acne is not cancer!

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You don't believe it, which makes it untrue?

I can recall meeting face to face with 3 other former Isotretinoin patients, who are unrelated to my online activity.

-One young lady began vomiting and excreting blood during Isotretinoin treatment in her senior year of high school. These symptoms lasted for a few years after she stopped. She suffers from arthritis in her late 20's, a symptom which also began during treatment.

-The second young lady developed severe depression soon after initiating treatment, which persisted for at least a year after cessation of treatment. Her mother stated that she is unresponsive to antidepressants.

-A young man who who took Accutane at 12-13 y/o and had problems with erectile dysfunction at 14 years old. He dated an ex-girlfriend of mine prior to me meeting her. She said he was the only other man she has been with with, with the exception of myself, to have this problem.

-I developed erectile dysfunction and severe depression within the first month of starting Accutane and was left completely impotent for 4 months after stopping. I was 18 years old, with mild-moderate acne. I haven't been able to conceive a child and have a low sperm count, low motility, and poor morphology. I was also DX'd with hypogonadism at 20 years old. No explanation for why this happened to me has been provided by my doctors, except that there is a possibility Isotretinoin caused it.

Of course, I have almost certainly met others who took the drug and experienced no side effects, or mild side effects, but have yet to meet someone in person who has come forward to tell a success story.

You mentioned that you never used Isotretinoin. So, what vested interest do you have in debating what we have said about the drug? If our hardships are in fact due to Isotretinoin, then you are a true monster.

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I don't know why you continue to undermine the statements made here (except that i suspect you are working for a pharmaceutical company, or a dermatologist), but all the effects mentioned here have been documented as post marketing adverse effects of isotretinoin, and some of them are mentioned (or alluded to) on the drugs printed info sheets. "menstrual changes", reduced sperm count, hair loss, and many other things are documented effects of isotretinoin. There are hundreds (if not thousands) of people who experience these effects long-term after discontinuation of the drug. I'm really tired of you trying to discount everything people write here.

Not all the effects have been proven to be caused by isotretinoin, but they have been associated with it's use and some have a possible association and some have a probable association, and yes even some have proven association.

Yes, there are thousands (maybe millions) who do NOT experience long term adverse effects from this drug, but that does not mean those who are should be discredited, minimized, or condescended to. Rather, they should be empathized with, directed to others with similar experiences, and to published information/studies re the problems and their possible association with isotretinoin.

Anyone who reads your "name" knows you are trying to undermine reports of associations, you really do not need to shoot down every comment that is made.

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Then you might as well (dear It might not be isotretinoin) quit reading and posting here.

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The best outcome for this group is to warn people that isotretinoin is a potent drug and should not be used lightly.

I don't know how you found a dermatologist willing to treat 3 pimples with Accutane at least 5 different times. Was the doctor an actual board-certified Dermatologist?

The tragedy is when Accutane is used outside of the indication for severe cystic acne which didn't respond to ANY other treatment.

It is a requirement for every Accutane patient to read all the warnings. If you just relied on the doctor's word, and ignored the written material and the Internet, you probably bear some responsibility for your situation.

Follow the money. If you find a fertility specialist who wants to blame everything on isotretinoin, consider a second opinion.

Does anyone have any peer-reviewed well documented evidence for isotretinoin and infertility or is it all just a series of anecdotes with no study of co-morbidities or concomitant or pre-existing conditions?

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