Accutane And Infertility (Page 11)

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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.

635 Replies (32 Pages)

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201

Actually everyone here is a woman with severe acne and infertility.

The number of women who have exactly the same problems and have not received isotretinoin is a 1000 times greater than those who have.

Everyone is entitled their own opinion, but not to their own set of facts.

The rooster is absolutely certain that the sun rises because he crows.

I am sure that everyone here believes isotretinoin is responsible for their infertility.

The tragedy is that this belief prevents them from getting their infertility diagnosed properly. Even worse, is the unnecessary treatment with Accutane, when an anti-androgen like Aldactone, a simple diuretic would produce even better results and possibly help with the infertility.

I understand the "My mind is made up don't bother me with facts" mindset, but this discussion is actually hurting women.

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202

Please! your being obtuse, firstly not everyone on this site is female. Read the posts, men are suffering too. Secondly, this forum is what it claims to be "a forum" which allows people to discuss their views and opinions.

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203

WOW! I wonder how much research and studies outside of a rep giving you information you know about accutane. How much of Hx from the begining do you know about accutane???/ Very insensitive as if you would have read this entire thread you would know that many have had infertility tx with NO sucess.
I mean Accutane is a very toxic drug and Willam Bollag M.D. the inventor even has stated that and I could go on, but I won't. By the way have you acutally read the 500 side effects that Accutane/Chemo causes, many of them are found in hormonal and autoimmune disorders.

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204

I've been prescribing Accutane for 33 years. I have treated several thousand patients and never seen the side effects described here.

By simple chance, with 50,000,000 people having been treated even a side effect as rare as i in a 1000 means 50,000 people.

It is comforting to blame your problems on Accutane. How many of the people in this forum have had a complete workup that has ruled out EVERY OTHER diagnosis but Accutane?

There is absolutely no reliable evidence that Accutane has any effect on male fertility.

Again, ,you are missing the beam and snatching at the mote. The most likely cause of severe acne and infertility in men is anabolic steroids. Of course, why take the blame on yourself when you can attribute it to a non-existent evil beyond your control.

How many posters here have had a complete endocrine workup BEFORE they were treated with Accutane.

PCOS is thousands if not millions of times more likely to be the cause of infertility and severe acne in women than some bizarre side effect of Accutane.

BTW, there are no Accutane reps in the US and haven't been for many years.

I read the peer reviewed evidence based scientific literature, I don't glom on to someone who has no evidence but a gut feeling or whatever.

The measles vaccine scandal is an example of how one man planned to replace the current vaccine with one he held the patent on and make billions licensing it. His work has been entirely discredited and we now have measles epidemics among non-vaccinated children with deaths and brain damage.

If there is peer reviewed medical literature that supports these bizarre claims, post the references and let everyone judge for themselves.

The tragedies are real but the cause is not.

The benefits of Accutane are overwhelming in teenagers depressed and suicidal over severe disfiguring acne. Even if you told them there is a 1 in a million unproven risk of future infertility, they would all take the Accutane.

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205

I hear what you are saying, and to some extent agree with you - we cannot 'blame' accutane without evidence. However this site is collecting a reasonable sample size of people with similar problems and history of medication. When I went for fertitlity treatment I was never asked "have you been on accutane?", nor did I contact my dermatologist and say, "hey, guess what? 9 years after taking accutane, I'm now infertile, do you know if there is a connection?" So I'm not surprised that given your 33 years you are not aware of a link. But all good doctors, and I'm sure you are one, need to be open minded to considering these co-incidences. We actually need doctors like you to investigate to ensure that there is not a link. My step son also used accutane and suffered depression. We were unaware of the links to this for 2 years. Co-incidence? Maybe, but it all needs to be investigated with a good sample size. This forum is at least generating a sample size of one persuasion. Worth thinking about before writing it off as nonsense.

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206

Just another thought: perhaps you could do a study of your patients over the last 33 years? You could post them a survey to ask about fertility issues and compare this data to the length of time they were on the medication. Would be interesting! Then you could share this survey with this forum as a good convincing argument in your favour.

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207

Excuse me Dermatology Doc, I don't mean to be rude, but your constant need to prove yourself correct in the forum has become a bit repetitive. This forum is a support for women as well as men suffering from infertility who all have something in common. According to my Endocrinologist who happens to be the best in my state, many of the women who took Accutane in their teens are in just recent years in the childbearing years. It is too soon to tell if there is any correlation between Accutane and my diagnosis.

I was diagnosed with Premature Ovarian failure at age 27. Imagine my devastation when I was told that I could only conceive via in-vitro fertilization using donor eggs. Is it just a coincidence that many of the women are like me and have been diagnosed with this disease at such a young age? Maybe, but maybe it really isn't coincidence. My doctor did say that it is rare to see this of a women in her 20's, but concerning because just in the past 5 years, they are seeing it more.

You have made your case amongst all of us so please, ENOUGH with the constant need to be right. You may be a Dermatologist, but does that make you a fertility expert? Why don't we just leave it up to the experts. This forum has become a support group for those of us suffering from infertility, please leave it as that. We don't need someone constantly badgering on here do to your need to have the last word.

Thank you for your information in your area of expertise, I hope that some may find it helpful.

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208

Kaye, I absolutely think this would be a great idea! I think that is what many of us have been hoping to see happen. I wish there was a doctor out there who would conduct some type of a survey and maybe see some research. I would be completely fine to be proven wrong because it would rule out one of the possibilites. I just want to know why I've lost so many eggs, why are my ovaries all dried up? We all just want answers.

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209

Regarding Accutane and depression, we have huge studies showing the rate of depression is higher in people with severe acne who are NOT treated with Accutane. Severe disfiguring acne is in itself a cause of severe depression. In fact, all of the data point to a DECREASE in depression in severe acne treated with Accutane. The warnings about depression are in the first Accutane pamphlet from 1980.

It would be bordering on malpractice NOT to treat someone with depression who has severe acne.

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210

I understand that this a support forum and I am a huge fan of support forums.

However, have you researched the incidence of infertility in women with severe acne who have NOT taken Accutane? Is it any different than 50 years ago before Accutane was even discovered.

Another issue that you might want to consider or research is whether there is a common link between severe acne and infertility such as inflammation?

The same severe inflammation in the skin that arises at puberty may also arise in the ovaries and lead to premature ovarian failure or scars in the ovaries just as in the skin.

This seems to be the case with inflammatory bowel disease. It's not caused by Accutane, it's caused by the same inflammatory process that takes place in the skin.

The same thing happens with psoriasis, not only are the skin and joints inflamed, but blood vessels in the heart and brain, leading to a greatly increased rate of premature death in psoriasis from cardiovascular events. Treating the psoriasis with the new biologic medicine not only clears your skin and saves your joints but also your life.

I expect everyone treated with Accutane was first treated with a tetracycline class drug (also includes doxycycline and minocycline) These drugs have profound effects. Perhaps it is the longer treatment with the tetracyclines in people with severe acne that causes the infertility.

How many of the people in this forum were treated with tetracyclines?

The rise in infertility may be linked to the earlier onset of menarche. In 1850 when all they had were whale oil and wax candles menarche was at 16-18 years old. Now it is down to 9 years old. Maybe the extra 100+ menstrual cycles from 9 to 16 cause the premature ovarian failure. Maybe ovaries are good for 300 cycles or 25 years, so if you start at age 18 your ovaries are good until age 43 and if you start at age 9, they last to age 34. Maybe the effect of ovulation on immature ovaries is 2 or 3 times as bad. Then there are all the hormones and estrogen like chemicals in our food. Even the groundwater is contaminated with hormones from birth control pills flushed down the toilets.

This forum will never reach the people who have the exact same problems but never took Accutane.

If the only purpose of this forum is to vent, then my posts are useless. If you truly want to find out what is happening with your infertility, consider the possibilities that I have mentioned, these barely scratch the surface.

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211

I went on accutane for 8 months when I was 20 and now at 24 I have a low egg count. My gynechologist who is one of the best in Western Australia said he is pretty confident that this was caused from accutane. I don't have PCOS and there is no track of infertility in my family and I am extremely healthy. Please don't keep promoting accutane as if it's a good thing, it really isn't and its not worth the side effects and suffering caused later on in life. My gyno put me on aldactone which has helped my skin alot with no side effects. You are only a dermatology doctor not gyno or fertility expert so your "opinion" is irrelevant here.

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212

Regarding Accutane and depression. I was one of those teens who suffered from depression, not before or after taking the drug, but while taking it. At the time, my dermatologist had told me that it was not known to cause depression. Years later, we find that it does. Please don't act as if you know each and every one of us. For you to tell us that we were depressed because of our acne is insulting! You do not know any of us personally so therefore, you should not be lecturing us on why we were depressed. While on accutane, my face was as clear as ever and I was pleased with the results. I have never suffered from depression otherwise.

This is an infertility discussion/support group and your recent posts are insulting and inappropriate for this forum.

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213

June 1985 ** DEPRESSION ADDED TO THE LABEL WARNING**
Roche amends Accutane's package insert under 'Adverse Reactions' to state:
"The following CNS reactions have been reported and may bear no relationship to therapy - seizures, emotional instability including depression, dizziness, nervousness, drowsiness, malaise, weakness, insomnia, lethargy and paresthesias."

August 1986
Roche amends Accutane's package insert to state:
"Depression has been reported in some patients on Accutane therapy. In some of these patients, this has subsided with discontinuation and recurred with reinstitution of therapy."


1996
An FDA physician noted two cases of suicide in a listing of recent adverse events associated with Accutane. FDA began a re-evaluation of the drug's potential link to suicide. Because suicide is the most serious consequence of depression, the FDA reviewing division enlisted the help of specialists in the FDA epidemiology division to try to determine whether the cases could possibly be related to Accutane use. The division undertook a systematic analysis of the published literature, previously reported cases entered into databases, and incoming safety reports. Some of the reports, however, included important details that did suggest the possible involvement of Accutane. Some reports described a consistent pattern of symptoms in patients with no previous history of such symptoms and no other identifiable reason for their occurrence. Other cases were described in which the symptoms began during the Accutane treatment and then resolved soon after the medicine was stopped. In a subset of these cases, Accutane was then restarted and the same symptoms returned. While these findings do not prove that Accutane causes psychiatric illness, they are suggestive of a possible link. [Source, JONCA BULL, M.D - DEPUTY OFFICE DIRECTOR, FDA- Statement Congress Hearing 2000]

FDA initiates a MedGuide program to provide patients with drug information leaflets (also known as "patient package inserts" or PPIs). In the past, FDA had established PPIs through independent regulations or through voluntary manufacturer agreement. Where public health warranted, MedGuide would have permitted FDA to develop PPIs without manufacturer consent.
In response to industry objections, Congress enacts an appropriations rider limiting the MedGuide program. Congress permits FDA to develop MedGuides for 40 drugs with serious side-effects, including Accutane.

Roche unsuccessfully seeks in Federal court in New Jersey to suppress public availability of extensive Accutane documents, including adverse event reports, marketing plans and clinical data, relating to Accutane's risk of birth defects.

According to a 1996 press account of FDA documents, "More than 90 percent of females treated with Accutane did not have severe cystic acne."

May 1997
Dr Kathyrn O Connell, Medical Reviewer at the FDA, issues memo to Dr Jonathon Wilkin stating that depression should be added to the boxed warning for Accutane. The database contained 51 patientss on Accutane therapy who had committed/attempted suicide. Only 11 had documented previous psychiatric illness. Dr. O' Connell stated that "..the overall impression from these sources is that Accutane may precipitate serious psychiatric disturbance and suicide".
- Supporting Documentation- Memo from Dr. O’Connell to Dr. Wilkin about suggested addition of depression to box warning
FDA Memorandum dated 23 February 1998

August 1997
FDA issues a warning letter to Roche for failing to submit serious adverse event reports in a timely manner.
Roche claims its computer systems are responsible for delays of up to eight years in complying with the law.
February 25, 1998
FDA requires Roche to add the following new bold-face warning to Accutane's physician package insert. FDA is still unaware of the new French warning.
"WARNINGS - Psychiatric Disorders: Accutane may cause depression, psychosis and, rarely, suicidal ideation, suicide attempts and suicide. Discontinuation of Accutane therapy may be insufficient; further evaluation may be necessary. No mechanism of action has been established for these events. "ADVERSE REACTIONS - In the postmarketing period, a number of patients treated with Accutane have reported depression, psychosis and rarely, suicidal, ideation, suicide attempts and suicide. Of the patients reporting depression, some reported that the depression subsided with discontinuation of therapy and recurred with reinstitution of therapy." In its press release, Roche claims there is no proof of causation and that "teenagers are at particular risk for depression."
- Supporting Documentation- FDA Talk Paper dated 25 February 1998

March 1998
The U.K. and Ireland require warnings of Accutane's risk of psychiatric disorders which are similar to those in the U.S.


March 5, 1998
Just two weeks after Roche is compelled to strengthen warnings of Accutane's risks of "depression, psychosis and, rarely, suicidal ideation, suicide attempts and suicide," the FDA is forced to issue a warning letter requiring Roche to cease "false and misleading" advertisements which promote Accutane as an "effective treatment of severe acne... [that] minimizes negative psychosocial effects such as depression and poor self-image."

FDA adds, "This claim is particularly troublesome in light of information recently presented in a Dear Doctor letter that Accutane may cause depression, psychosis, and rarely, suicidal ideation, suicide attempts and suicide."

FDA charges Roche to "prominently disclose information about the psychiatric disorders described in the warnings section of the revised labeling" in Accutane advertisements.

July 1998
FDA becomes aware that French authorities had already required the addition of an Accutane "suicide attempt" warning in 1997, of the 1992-94 French study associating Accutane with depression, and of Roche's failure to disclose this information to the agency.

I Can post more of a timeline....I believe on the FDA website Roche got in trouble for having a commercial back in the day promoting Accutane helps depression. Ignorance is bliss! Coming from a physicans wife

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214

Chemotherapy can cause infertility, well Accutane has been used as Chenotherapy agent so who says it can't cause infertility. Why don't you tell the many of boys and men and Dr. Kevin Pezzi (he suffered himself) that Accutane can't cause infertility or sexual dysfuction in men....
Roche itself and generics include abnormal menes which could mean alot of things when it comes to infertility.....and in studies Testicular atophy was noted hmmm.....Since you have soo much time on your hands doctor why don't you go and study up on the biochem of Isotretinoin/retnoids! I guess you say my severe osteopenia and loss of height documented while on accutane is can't happen either.

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215

Thank you Oli Girl, I was just about to say something very similar to your post. Why is this Dr harassing people on here anyway? I came here to have a discussion with others who may give me some incite on the topic at hand, not to be bashed on. You are correct, this medication is chemo in a pill, and I have started to get my medical records together from 13 years old on. I am a college student studying Human Development who loves to research, and I WILL come to the conclusion of my health once I receive and review my records. I plan on constructing a timeline of symptoms and diagnosis of them. And as far as the remark from the Dr himself...I am assuming most of us do know the reason for miscarriage! My OB had NO answers to give me when I lost my baby,. she said I was completely healthy and didn't know what to tell me. Not the answer I wanted to hear. Well, I'm out to find my own answers!

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216

I'm sorry but Accutane isn't chemotherapy or used as chemotherapy. And chemotherapy can cause infertility by different mechanisms. Another straw man or woman fallacy.

The point about Aldactone is perfect. Women should not be put on Accutane if they can be treated with a harmless anti-androgen instead. The only caveat with Aldactone is that it will block testosterone in a male fetus resulting in all sorts of deformities from hypospadius to complete feminization.

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217

Do you mean that males shouldn't take this? Or it causes deformities for women as well?

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218

Definitely not for males. Aldactone would be like a chemical castration.

It's a great drug for women with acne, hirsuitism, androgenetic alopecia.

Must not be taken by women who are pregnant or planning to become pregnant.

It will treat acne without the clotting side effects and possible infertility from OCPs.

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219

Hi my name is Tom and I have low testosterone since accutane and sexual dysfunction. I am willing to participate in the class action suit. Please someone do something.

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220

Low testosterone. Did they test sex hormone binding globulin? SHBG is the body's transport protein for Testosterone as well as estrogen.

Body fat also plays a role. Too little body fat and your body can't store enough testosterone or estrogen and you get infertility and low hormone levels.

Too much body fat (which can be seen in PCOS due to insulin resistance) and all your hormones wind up stored in the fat and you again get infertility, etc.

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