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You are right.
Hmm, I was not aware I was "insulting the original posters thread". Thanks for the advice, I'll be absolutely sure to consult you when I need to know what other people's feelings are!
And to Babis, if you're going to try and make me look bad on the internet, the least you could do is have the decency to not come off as such an ass. I never once directly flamed you in my previous post, like you just did numerous times. I'm not trying to have a pissing contest with you, but apparently, being arrogant and bad-talking everyone that disagrees with you is in your gene pool, as well.
My God, you people remind me of the interesting fellas over on Blueline.
To those posters who are dubious about Accutane's ability to induce long-term sexual dysfunction, I can unequivocally say that it most certainly, 100% can, and does.
Your posts are not only unhelpful but are quite frankly quite insulting and hurtful. To whoever said "Stop obsessing & get some help for you ED instead of just bitching about it" - we're posting here to try and get help by speaking with others who are suffering in a similar way. You interjecting with unnecessary snide & even mocking comments is just side-tracking the discussion.
Also, I just want to say thanks to Babis, I don't really post here that often but I do follow your posts. You're very knowledgeable and I've found many of your posts helpful, most notably all the studies you've posted! I'm sure there are other lurkers who feel the same, so thank you! Keep doing what you're doing and don't late that type of negative feedback deter you.
Thanks a lot showbarka. It's nice to know someone benefits from this info. I discovered the truthfulness of these side-effects (and more) the hard way. I cannot go back and prevent my past self from taking accutane. I can only try and cope with it any way I can, and exchange info with others.
Also, after consulting
2 urologists
3 endocrinologists
2 neuro-endocrinologists
9 neurologists
1 neuro-ophthalmologist
1 ophthalmologist
in Europe & United States, and after having tests which are too many to mention, I find the statement "Stop obsessing & get some help for you ED instead of just bitching about it" a tad ludicrous. And by the above specialties you might get the hint that hypogonadism was the first problem in a very long chain of more serious ones.
To those posters who are dubious about Accutane's ability to induce long-term sexual dysfunction, I can unequivocally say that it most certainly, 100% can, and does.
Your posts are not only unhelpful but are quite frankly quite insulting and hurtful. To whoever said "Stop obsessing & get some help for you ED instead of just bitching about it" - we're posting here to try and get help by speaking with others who are suffering in a similar way. You interjecting with unnecessary snide & even mocking comments is just side-tracking the discussion.
Also, I just want to say thanks to Babis, I don't really post here that often but I do follow your posts. You're very knowledgeable and I've found many of your posts helpful, most notably all the studies you've posted! I'm sure there are other lurkers who feel the same, so thank you! Keep doing what you're doing and don't late that type of negative feedback deter you.
I just thought I owe an update. It may be slightly off topic, but tangentially related to the ED issue.
As mentioned above, about 15 months ago, I developed symptoms of hypogonadism while on Accutane. 6 weeks after stopping, I tested low on testosterone and had inappropriately normal LH or Lutenizing Hormone (LH should be elevated by the pituitary in response to low T). Short-term testosterone therapy restarted my system and resolved symptoms.
But 11 months ago, I developed several symptoms of dysautonomia or autonomic dysfunction. This time, my response to testosterone therapy was only partial. ED is one of the hallmarks of dysautonomia, so it seemed obvious that this was a second contributing factor.
When I finally had autonomic testing done, it was positive. However, I was told that there is no cure, only symptomatic treatment. I was sent home with orders to drink more water and eat salty foods such as potato chips. I replied "which brand?" and "will you give me a prescription for the potato chips?" and I got a blank stare from the doc 
But things worsened, I fainted and got injured, and my doctors prescribed symptomatic medications, that only reduced some of my symptoms by 30%.
I wanted to find and treat the cause, not the symptoms. When I asked my doctors for the cause they said "it is what it is". After reading lots of literature, it seemed that one of the few potentially treatable causes of dysautonomia is autoimmunity, so I asked my doctors if my problem was autoimmune. I was given a firm no. I kept researching and found the Autoimmune Dysautonomia Evaluation Algorithm. I requested the test from my doctors, who one after another denied. They almost convinced me that that my problem was not autoimmune. But I wanted to cover all corners so I decided to just keep going to different doctors until someone would agree to do the test.
After 10 months and 10 doctors, someone finally ordered the test. Surprisingly, the result was positive. (The funny part is, even that doctor told me the results were negative; I noticed the positivity myself when I asked for a copy of the lab report.) In any case, the result was positive for the alpha-3 Acetylcholine Receptor Ganglionic Autoantibody, which indeed suggested neurologic autoimmunity. I thought I finally had a clue, but my doctors did not think much of the result. They claimed such antibodies have not been proved to cause direct damage to the autonomic nervous system and that immunotherapy would be contraindicated. However, the Mayo laboratory interpretation of the test, as well as some literature stated exactly the opposite. This antibody is one of the few that have been actually shown to cause direct damage to autonomic ganglia. It occurred to me that I should not waste more time waiting for my buffoon doctors to get smarter. I e-mailed a neuro-immunologist at Mayo clinic, who offered to see me asap.
I just got back from that trip. The neuro-immunologist confirmed that this antibody is directly causing autonomic neuropathy and that 60% of patients respond to immunotherapy, and he provided guidelines on how to administer such therapy. Because it requires injections, testing and monitoring, it cannot be done now (since I am about to change job and continent). I hope I can find some expert in Europe willing to administer the therapy.
Accutane, the H1N1 vaccine and viral infections are all known to trigger autoimmune neuropathy. There is no way for me to tell which one of those was the culprit. More likely than not, it was all of the above plus genetics.
By the way, since I have been in a catabolic state for months, I asked my neuroendocrinologist to test my IGF-1 level. (This peptide is secreted by the pituitary and stimulates the liver to produce growth hormone.) It just came back low. This is a second strong indication for a pituitary problem, in agreement with articles posted above, notably
Effects of chronic retinoid administration on pituitary function
Short-term isotretinoin treatment decreases IGF-1 and IGFBP-3
Isotretinoin influences pituitary hormone levels in acne patients.
15 months after symptom onset, I finally have clues for some of my problems. Now the question is what to do about them.
Babis- That is great that you found doctors who would do theese tests. I had many symptoms of Autonomic disorder...Things got better for me some, Though I might just have my Internist do theese blood work. Oh and if you get immunotherapy please update and what is done
Keep hanging in there
Greetings, i signed up to this board for the sole purpose of making this post in this thread to share my experience with any men or teenage males who may be considering using Accutane.
I am now 27, but used Accutane for a small period of time when I was 17 and experienced sexual dysfunction for many years. I wouldn't say i am fully recovered now, but i am more function-able now 10 years on.
I started masturbating at a young age, approximately 9-10, and this was partly due to the highly frequent amount of rock-hard erections i would get day-in day-out. Once i 'figured' out masturbation, it became consistant and part of daily life. By the age of 15, internet was becoming more widespread and accessable, so along came porn and more sexual investigation. I had engaged in sex at 16, and was still a frequent masturbator and played masturbation games (how quickly i could make my already hard dick cum, how hard i could get my dick, how long i could stay hard etc). While i wasn't having frequent sex at all, sex drive was no issue and i was the owner of a rock hard, decent sized member.
I started getting moderate acne at 14, going through all the 'Chemist's shelf' cleansers and creams from 14-16 to no avail, then sought medical advise at 16. The doctor was skeptical at giving me Accutane, so i was firstly placed on a lesser acne medication (do not remember the name of it). After 6mths of that treatment and no significant results (side effects: chapped lips, dry palms) I returned to the doctor. I was then given a prescription for Accutane (do not remember Mg amount).
Hoping not to take 'credibility' away from my experience, but where the line was drawn between my intense sexual decline and Accutane is hazy. This is due to the fact that i had spent much time with both doctors going over Accutane side effects, and what i was experiencing was not something i was aware of, so it took me some time to draw a feint time line between the events. When it did click that it could be a possibility, a search of the internet and a topic on this site confirmed my suspicions. Side effects i was aware and noticeable of was depression and emotional 'blankness'.
Basically, approximately a few weeks into treatment, i was noticing that porn pics and videos i had that would 'instantly' make me hard and be able to cum in a matter of seconds, were no longer having that effect on me. It first started with my erections still being full, but rather than rock hard, they were hard in the core of my penis, but the outside of it was spungy and soft. Soon this turned to only the base of my penis was seeming to gather blood and the hardness lessened down my penis towards my head. I could still manage to orgasm at this stage, but it was not what i was used to and had done 1000's of times before. It was getting incredibly hard to hold any blood in my penis, and i would (and still often do) strain and stretch my body as i am masturbating to "increase" blood flow. My ejaculation had gone from spurts with pressure and force, to slow drips. If i could explain the connection between my brain and penis, it felt like my brain would recognize something that i found attractive sexually, but it was unable to communicate with my penis. My penis felt almost not of my body because i had lost so much control and feeling from it. To put it in a % form compared to by best being 100%, my lowest point of erection was about 20% at its worst.
Further to this ED, i also noticed inline with these effects significant changes in my urination. Much like having a very strong erection previously, my flow of urine was very strong and i 'project' my urine a fair few feet in the air if i pointed it upwards and put some 'push' behind it. Now i was going to the toilet and getting no pressure behind my urine at all. At its worst it was just dribbling out in a very thin flow and i would be lucky to be able to shoot it 2inches in the air by holding my penis upwards when urinating. On top of this loss of pressure, i wasn't able to finish my urination properly. This means that when the main flow had come out, i would still feel urine in my penis, but was unable to use pressure to 'squirt' these remaining drops out. What this resulted in was urine usually dribbling out of my penis 5 minutes after finishing urination. Further to this i also noticed that my bladder was no longer holding urine as well. In the past i could hold on large amounts of fluid for a long time, but now it seemed sometimes i struggled to hold a glass of water in my bladder. My bladder felt at about 20% compared to a healthy 100%, and my urine pressure felt like it went down to about 10% of its original pressure capacity. My penis had also decreased in size.
I made the link to the start of the Accutane treatment, about 3mths into it and stopped immediately as soon as i came to that conclusion. I sat, waited and monitored the damage for about 1 year before looking for actual help. In this time, i was becoming increasingly depressed and mentally destroyed and confused being a 17/18yo male who was unable to masturbate or have sex. The social effect this has is completely devastating and those who haven't experienced it could not fathom it. This is where i believe this side effect is it's most evil, as what starts out as a physical effect quickly develops a strong mental partner.
At about 18, i was too embarrassed to tell my folks, did some internet research (as mentioned before, found topics on this site regarding the issue) and booked into a Urologist. I had explained the above cycle to the Urologist, explained my suspicions and he advised me that if the side-effects weren't listed, that it was highly unlikely to be linked to Accutane, and that i was just going through a phase as a young red-blooded male. His advise was to hand me some sample Viagra and go bang some girl to get my confidence back. This was no help, my brain was still attracted to females i met, or porn i was watching but no connection to my penis. This went on for about another year until i got found out by my parents. My mother had noticed a payment reminder letter coming from a Urologists office to our house and confronted me about it. I eventually had to confide in my parents, who were sympathetic but i didn't rate as very understanding of the impact of the situation on my life. Regardless, we booked into a 'highly regarded and award winning' Urologist.
By this stage (approx 2 years after treatment), i had experienced some recovery in all the above concerns. Erections were at about 40%, bladder 50%, urine pressure 30%. I had re-advised the new Urologist of my history above, and he pulls out a medical book that lists all medicines and their listed side effects. He advises Accutane has no recorded history of sexual/penile dysfunction. He proceeds to test my blood and testosterone to find nothing unusual. Then after many sessions advises me that there is nothing wrong and it's something in my head and i should perhaps see a psychologist. I don't argue the point that my Dysfunction is now a big part mentally, but he doesn't agree that my issues were first caused by physical damage. That's the last time i see a doctor regarding this issue ever. I decide that i will just have to live with it and hope my body recovers in time.
Over the years, it has been a slow recovery and things have improved, but not to what i remember things being. If i had to state how each part of me feels i would say erections are 80%, libido at 75%, urine pressure is 70% and bladder is 80%. It is incredibly hard to gauge how i really am however. Its been a decade since i first noticed these effects and its hard to remember what it was like at it's worst, and more importantly what it was like before when things were normal. I can say however that these bodily functions will always feel tainted to me. I just haven't felt right since i first noticed these effects, i definitely wasn't right when i was on Accutane and i don't think i will feel right ever again.
I can't say i have done anything to regain my function, i got no help in regards to that from Medical Practitioners. The only help i guess i gave myself was to try and keep masturbating in the hope that the act of doing so would help the body build (much like weigh-lifting to build muscles). The biggest part in my recovery was a understanding girlfriend and relationship i had for 2 years from 22-24. This was the first time i felt comfortable and confident enough in my abilities to be with someone sexually since 16/17. There were issues during the first time, and on the odd occasion about the 2 years, but for the majority of the relationship i was sexually functioning on an acceptable (not quite feeling normal) level. Anyone that has had these side effects, as daunting as it may seem, i cannot promote this any more as one of the best forms of healing for you. The relationship didn't return everything to normal, but it did significantly quell alot of the mental trauma i had built up over the years. The most important thing was having sex and having sex frequently after the years of impotence, knowing that you are capable of having sex again and not doomed entirely to be asexual your whole life. It is also important being able to have someone to be able to talk to about it.
Looking back over the last 10 years, i can say that the social side of this side-effect is life-changing and destroying to a certain extent. This post is large enough without me going into this side of things, but hopefully people reading the above will be able to grasp a picture and fathom what it is like for a male 16-27 to suffer from unknown Erectile Dysfunction issues for this long of a time. It has changed my personality, my social circles, my social skills, my social confidence, my relationship skills and view on life. Life is not terrible for me so much now, but i am still affected on a daily basis in someway, the effect Accutane had on my bodily functions. If its not physical, it's mental lingerings that have developed as of the firstly physical issues. I am now at the point considering psychological sessions to discuss these last 10 years in more detail to someone. It's baggage i have that still haunts me, even though life has returned to an acceptable warped post Accutane normality.
I just wanted to share my experience with those out there who have either gone through the same thing, or alternatively as a piece of information for any teenage males who are considering taking Accutane for acne. At 27 i still get acne and blemishes, but it really is of no concern to me at all anymore and does not carry the same mental weight as it did in high-school. After the effects i experienced, i realized that acne really is nothing bad in comparison, and when you leave high-school, no-one really gives a f*ck if you have acne or not except for yourself.
That is part of my story and experience with Accutane. I am sure there are millions of users out there that have had successful and happy Accutane treatments, but this is my experience. Take from it what you will and make your own decision. If i was asked if i would recommend a teenage male Accutane for his acne, even with the slight chance this "rare" un-listed side effect could happen, i would heavily suggest its not worth taking the risk.
Thanks for those who took the time to read. I hope it was somewhat insightful or assisted you in someway.
Man you described my experience exactly. I took Accutane when I was 18 and am now 28. I have recovered maybe to about 75%. I agree with you that sexual encounters will never be the same. My orgasms and stamina will probably never be close to what they used to be. I also experienced the same urination problems as well. I don't really have a purpose to this post other than to say you are not alone. I can relate to your story very closely. My problems occurred right after finishing Accutane and have persisted since then. That fact combined with the numerous posts I have found on Accutane and ED have led me to believe Accutane is indeed the culprit of my problems. Anyway, good luck in the future and keep us updated.
Hi Abcabc,
Thanks for your reply, i was hoping you could discuss in a bit more detail some of your experiences.
- 75% Recovery: What did you do to assist this, what action did you take to 'heal' yourself?
- Urine problems: Something that i haven't seen much of regarding Accutane. I have found links of Urinary Tract Infections, but I personally was tested for things such as this long ago, with a negative result. I haven't found anyone really describing what i have regarding Urinary function and Accutane. Could you please describe your experience in more detail? What you first noticed, what it was like at it's worst, how you are now?
- Psychological state: I am curious to know your psychological state after all these years. The first 5yrs for myself were incredibly depressing, and had some of my worst depressive moments. This depression mostly cycled around my ED and it's total effect and change on my life. After my relationship i have been significantly better mentally, however, the still always feeling tainted and daily memory/reminders of years past and of 'what used to be' is never too far out of my mind (im sure you can understand and relate to this). These days i am either in a state of resided and numbed-out acceptance of the long-term effects and long-term partial recovery and continue to try going about life normally or I am subsided by bouts of depression contemplating if I actually know who i am physically or mentally anymore. The latter is the lesser, but there is always a level of lingering 'depression' day-in, day-out. This i don't attribute to being caused by Accutane anymore, but i attribute it to being caused initially by Accutane then pro-longed by the developed mental-counterpart caused by said Accutane-caused permanent ED side-effect.
- Emotional state: Another side-effect i believe is first physically caused by Accutane, but a mental counterpart is then developed and takes over as the stronger. I read a post by a user on another topic describing the 'emotional blankness' he felt on and after Accutane dosage. He tied this in with an example of no longer feeling his heart flutter or butterflies in his stomach like he used to around girls he was attracted to. This is the same for me, it has improved from its worst stage but it's lingered on enough that i consider myself partly 'robotic' in emotion and feeling. I don't know how to put this shortly and accurately (and in a way that doesn't seem ridiculously crazy to those who haven't experienced this), but the general emotions that come with attraction, sexual attraction and general human interaction are quite dulled now. Joy, sadness, anger, surprise, fear, anticipation, i know and feel all of these on a daily basis, but in a way i am always feeling non-plussed and monotone. I struggle to find a word that describes my emotional level better than 'dull'. If the average-person's happiness could be described at its peak as a lamp with a 100watt bulb, my happiness at it's greatest peak is that same lamp and bulb, except with a towel draped over it. You can still see the light and luminescence, you know its there and you know the lamp is on, but it's not as bright and it's effect is significantly duller. This is hard to elaborate on and explain, but i figure you will get it.
Cheers
Antisexaccutane,
I could write a novel on my past 10 years experience involving Accutane, but I'll try to keep it as short as possible. I started feeling my side effects about a year after taking Accutane. My side effects got increasingly worse up to years 3-5 post Accutane. At this point I had a list of side effects I had never experienced before in my life. Sexually, I could barely keep an erection even during masturbation. Getting hard ons from just looking or thinking about girls was a thing of the past. My orgasms became increasingly less satisfying. My ejaculate went from being strong, thick, and creamy to basically a water like substance. My urination problems were also during this time. I never had any pain or urinary tract infections, but my urine stream was about 20% of what it used to be. Also, when I was done urinating I would have to stand at the toilet for a couple of minutes to let the final drops of pee drip from my penis. In addition to this I also had insomnia. I swear there were weeks when I could only sleep about 20 hours despite being incredibly tired. My hair was falling out at a rapid rate. I had many nosebleeds. I became sensitive to the sun. Every time I went out into the sun a rash appeared on the inside of my elbow. Maybe the worst of my problems were joint, muscle, and back pain. I could probably think of other problems I had, but these were the worst. All of this led to depression to the point where I didn't care if I lived or not.
During years 3-5 post Accutane I tried a couple things to heal myself. I went to my doctor and told him about my struggles. He put me on an anti depressant (Lexapro) which made things even worse. I then went to a naturopathic doctor. She put me on many supplements and remedies. This was very expensive because insurance doesn't cover naturopaths, and the healing I received from this was definite but minimal. Then, about 5 years post Accutane I discovered fasting.
I tried a 35 day all water fast. I felt significantly better after this. I was not cured, but my side effects had improved a lot. I have done a total of 3 of these fasts in years 5-10 post Accutane. Every time my side effects got better. This is where I got my 75-80% health back. Fasting is not an instant cure, but it speeds up your body's recovery. It is difficult to do, but not as impossible as it sounds. The hardest part for me is finding the time to do it. If you even consider doing this I'm sure you will have many questions. I will try to answer questions you have, but there is an ABUNDANT amount of information on this subject on the Internet. As far as the sexual aspect, I have seen improvements there. My ejaculate is now thicker, and I can get better erections now than previously. My pee stream is a lot better than it used to be. Overall, I am about 75% fully recovered. I'm not back to the way I used to be, but I feel like I am on the way. I hope this helped.
Thank you for your input and support abcabc, oligirl, antisexaccutane, showbarka and Babis.
I recently finished my 6 month course (no real problems except for dryness) of isotretinoin (Claravis) on March 03. After finishing, my semi-brain fog wore off and my emotions and hormones were on steroids.
Then approximately 1 month after I completely crashed. It felt like part of my brain had shut down. My dick and brain were completely disconnected and I could no longer experience strong emotions. My dick felt numb, detached from my body, my libido went from off the roof to zero, orgasmic sensation dramatically decreased, erectile dysfunction, no more nocturnal erections, no more morning wood and no more spontaneous erections (This all happened basically overnight).
I am young and in my early 20s, I practically thought I was invincible before taking accutane. I talked to my Dr. about my concerns before starting the drug, about the studies that show decreased neurogenesis in the hippocampus, hypothalamus and inflammatory bowel disease. He just brushed them off as hearsay and claims he has treated hundreds of patients with no problems (this is probably because the most severe side effects don't appear until after treatment). Of course, I was stupid and listened to him.
Some of my emotions have come back, however the sexual side effects have persisted for 5 months after my crash. There is a direct study linking how isotretinoin (accutane) is linked with erectile dysfunction, but it doesn't receive much credit because it was done in Mexico.
http://www.ncbi.nlm.nih.gov/pubmed/16447596
Sorry, BB Code isn't working for me so this is the only way it would let me post my links! It is also noted in Wikipedia that erectile dysfunction and decreased libido are not rare, but infrequent side effects of isotretinoin therapy. It also notes that these side effects can persist long after treatment and can be permanent.
http://en.wikipedia.org/wiki/Isotretinoin
It's good to hear that some of you have recovered some overtime. There are many other sufferers who experience very similar symptoms over at
. It is believed that isotretinoin and propecia (finasteride) have near identical modes of action when it comes to the sexual and neurological side effects of the drugs. I plan to post more on this in the future. The mechanisms of action of isotretinoin are just beginning to be understood. A meta-analysis study has just been published on how isotretinoin works on an epigenetic level, potentially causing many side effects that persist long after its use.
https://www.landesbioscience.com/journals/dermatoendocrinology/MelnikDE3-3.pdf
Guys, in order to help others, please consider reporting your side effects to the FDA MedWatch program:
http://www.fda.gov/S...t/ucm053074.htm
The online report system is obviously the easiest. Just submit a short and concise report, and keep your medication boxes because they need the LOT numbers. (You will also need the boxes in case you seek legal help in the future).
Remember: you do not have to prove that your side-effect was caused by Isotretinoin. That is the FDA's job. The FDA wants you to report any side effect you experience while taking a medication. They will then compare the side-effect incidence rate with baseline rates and decide whether the label must be revised. If your problem is persistent, then make sure you mention that. Serious side-effects must be mentioned on the label even if causation cannot be yet established. Permanent neuroendocrine dysfunction is certainly serious.
If no-one reports this side-effect, the label will never be updated.
Updating the label (as the folks at propeciahelp.com achieved for finasteride) will accomplish several things:
1) Future patients will be given informed consent, so they can decide whether it is worth the risk or not
2) Patients that develop listed symptoms will recognize them earlier and stop the medication earlier
3) If the side-effect is on the official label, patients with persistent problems will be taken more seriously by their doctors and will get more thorough testing. This is critical and noone I have spoken to seems to be getting sufficient labwork.
4) If one does go on accutane, he should check his hormones before, during, and after treatment. You only have one pituitary gland and one hypothalamus, and isotretinoin has been shown to damage them. The current practice of just checking the liver is not enough.
Despite seeing multiple specialists at Froedert hospital for over a year, my hormone deficiencies and dysautonomia kept worsening.
Yet, in each visit, the doctors would only listen to 10% of my symptoms before stopping me. From that they could only explain 2%.
Ancient philosopher Plato used to say "I know one thing, that I know nothing". But not Fraudert doctors. They know nothing, not even that they know nothing. Despite my worsening symptoms, they confidently told me that (a) my problem is a very mild dysautonomia, (b) it is not autoimmune, (c ) I am exaggerating my symptoms (d) my symptoms were mostly psychological.
WTF? 
Not only were they confident, they also yelled at me for reading literature (as if it is their exclusive privilege, never mind that they do not bother reading it) and for going to a another doctor to get the antibody testing and the PET scan that they had refused. When the results came back abnormal, they got even more mad. The told me I was going on a wild goose chase. Well, I obviously want to find out what is causing my problems and treat the cause, so I chose the wild goose chase. The antibody test was positive. My PET scan was done at Fraudert hospital and was interpreted by Froedert radiologists as normal. Since I had no faith left in them, I asked the doctor at Mayo clinic to have my PET scan re-interpreted. The interpretation just came back and it is completely different. The Mayo radiologists used special software (called neuroQ) and here is the result.
Glucose metabolism compared to the mean:
Right associative visual cortex: -5.2 standard deviations below the mean
Right primary visual cortex: -2.9 standard deviations below the mean
Left associative visual cortex: -5.0 standard deviations below the mean
Left primary visual cortex: -2.2 standard deviations below the mean
Right superior lateral temporal cortex: -2.9 standard deviations below the mean
Cerebellar vermis: -2.4 standard deviations below the mean
Left cerebellum: -2.1 standard deviations below the mean
The pattern of abnormalities does not fit any classic neurodegenerative disorders.
The possiblity of a subacute neuroinflammatory or encephalitic process cannot be excluded.
These abnormalities correlate with my symptoms, but were completely missed at Fraudert hospital. I regret wasting a year of my life trying to get help from them. Never mind that Fraudert doctors misdiagnosed me, ignored me and insulted me. Most importantly, they failed to realize the urgency of the situation:
First, autoimmune dysautonomia is associated with a 30% cancer rate: some people have cancer and their body makes antibodies to fight it. Sometimes, even with the cancer gone, these antibodies hang around with nothing else to do but attack the nervous system.
Second, in the remaining cases, the antibodies were created as a mistaken response to a viral infection or vaccination. (Drugs like accutane increase the likelihood of autoimmunity, which is why you should not get vaccinations when taking it. Conversely, you should not take accutane if you have had a vaccine in the previous year.) As mentioned here, many such cases respond well to early immunotherapy.
This video on
by a Mayo Clinic neuroimmunologist illustrates the key points (cause and treatment are similar to autoimmune dysautonomia). The new specialty of immunotherapy-responsive nervous system disorders is likely to expand further as more antibody targets are discovered. Some groups are at the forefront of research, discovering antibodies, designing essays and algorithms to detect them and methods of treatment. But most doctors in your local hospital still have no clue how to diagnose, let alone treat, such disorders -- they live in medieval darkness.
I took the world's worst legal TOXIN known as Accutane in 1997 when I was 16 and a virgin and have literally been in a living hell ever since. By far the worst mistake of my life!!!!!!! I thought the FDA made sure drugs were safe for public consumption?? Boy was I wrong...dead wrong possibly. I guess the FDA takes the wait n see approach? Can you imagine allowing a damn drug onto the market and you don't even know exactly how it works? The exact mechanism of Accutane is unknown? WTF? Prove how it works then approve it....right? Well that's what the FDA did and it ruined my life along with my brothers. In the FDA's defense nothing like Accutane was ever created so I think they were taken off guard. At least I never thought a drug could be so permanetly destuctive. Taking Accutane for me and my brother was worse than actually dying, even though I am because of my Kidney. Whoever or whomever passed Accutane has a lot, and I mean a lot of blood on their hands. Every fetus that came out deformed, every poor kid that killed themselves etc. I just hope GOD makes anyone who knowingly put profits ahead of lives pay and pay dearly for what they may have knowingly did. They actually gave an award to Dr. Gary Peck aka "SATAN" who invented/created this toxin which makes me cringe. I learned the hard way that if something is too good to be true it always is. The only reason I took Accutane/Toxin was because it worked for my mother. She would rave about it all the time when I was young. She literally said to me it's a "miracle drug" and I quote "Everybody should take it". After I heard her say that I was sold and was dead set on taking it at the first sign of acne, which I later did and regret every single day.I remember clear as day getting home and was surprised to see that Accutane came in a box, and the pills were in foil. It said pregnant women shouldn't handle or take it. Red flags went up and I was thinking this stuff is legal and easily obtained so it has to be safe right? WRONG, I underestimated greed and thought it went through a lot of testing on humans. Just thinking a company made tens of Billions off literally poisoning people makes me sick.
Now I'm 31 and I just found out that 100% it had to be Accutane that ruined me. It is the only medicine, and it should be called "The SEX KILLER DRUG" I've ever taken besides over the counter meds. After I believe a few weeks into my 6 month dosing schedule I began to not be able to maintain errections and lost almost all the feeling in the head of my penis along with a disconnected/numbness feeling, like my penis wasn't a part of me. If you've taken Accutane young and are male you might know what Im talking about. I literally went from being rock hard and horny all the time to a pathetic joke and still am at 31. I never had a girlfriend in my life because I couldn't/can't perform.....again sad but true. I tried over & over and it usually ended up with me losing my erection being embarassed and never wanting to see the girl again due to total and utter embarassment. I still remember the first sign of impotence in 1997. I was very confused and alarmed -sad but 100% true. Little did I know that's how I would stay the rest of my life. My libido has been almost zero ever since taking that horrible toxin.
My brother took Accutane in 1996 and was the major reason I took it. He had really bad acne and it cleared him up pretty well. So I didn't want to get bad acne so I went on Accutane/Toxin as a precaution, which makes my story all the more horrible. At the first sign of a few pimples I told my brothers dematologist I wanted to go on accutane because I heard it cleared acne up for life. The Dermatologist was a little reluctant but said ok. A year after my brother was on Accutane/Toxin he confided in me that he couldn't keep erections well and said he really had no feeling in the head of his penis. I was uterly shocked because I was going through the same issue. I thought it was genectic because I was so sold on Accutane being safe I never correlated the two. His friend also experienced the exact same side effects. Think about it? The only 3 males I have known to take Accutane ie.myself, my brother and his friend all started to become impotent weeks into their course and have been that way 15 years later. There is no way it could have come from anywhere else but Accutane that is why I'm so adament it was Accutane that destroyed out sex lives/lives permanetly. Ater reading postings on here I had my DHT level checked and it is a mere 14.
I didn't put the two together until just recently and to say Im mortified would be an understatement.The sad part is I didn't even have bad acne. My mother took Accutane in 1983 and told me it was a" Miracle Drug".That is why I asked the dermatologist for it, and he reluctently did. He gave me 40mg for 3 months then 40mg/80mg alternating days the following 3 months.I suffered horrible depression, suicidal idealation, really bad aggession and a lot other side effects as well. I have kidney disease now and I have no family history or diabetes and never have taken any other medications so it had to be Accutane that destroyed my kidney. I never abused any drugs or alcohol either. Accutane has literally made my life a "living hell" as it has done to many. Too bad Roche didn't listen to Dr. Pezzi in 1991 or I could've been saved along with my brother and friend who also suffer from sexual dysfunction and zero libido and loss of feeling as a result of Accutane .For those unfamiliar with Dr. Kevin Pezzi he is a dermatologist who himself became impotent and contacted Roche numerous times dating back to 1991 about this horrible side effect.
But why would Roche listen? It would've literally costed them tens of Billions. This problem has to be widespread but it's exteremly hard to talk about, especially to a doctor who would probably not believe you.anyway. Roche had to know about this and knew disclosing this info would scare a lot of people away and open themselves to lawsuits. How could they not know? I hate Hoffmann-La Roche with a passion so deep that words cannot describe.I was wondering if hormone therapy or any other method could reverse this. After doing a lot of research I doubt it besides taking Viagra. Should I try hormone therapy or is that a waste of time? I wouldn't give Accutane to my worst enemy! It's literally cruel and unusual punishment. It would have been better for Roche to kill me. I literally feel as though I lived 1,000 deaths and I'm not exaggerating. I hope GOD makes Roche pay, because they had to know.I was living the dream until I took Accutane then the wheels fell off.
Before Accutane I never had a single sucidal thought, or was aggessive or had any obsessive thoughts or anxiety whatsoever. I really mean that, I was happy, now it's the opposite. There are 50 known listed side effects for Accutane and I got about the worst 10. I guess my body chemistry was just right to be affected? All I know for sure is before Accutane I was the completly normal and as soon as I went on Accutane I became extremely depressed, very Irritable ie. snapping on people, aggressive ie. got into fights my senior year, kicked off the baseball team/ school. I had crazy sucicdal thoughts a lot. And just had no interest in girls anymore. Also, I suffered from severve dry eyes which really screwed me up playing baseball before I lost my temper and got kicked off the team. I never smile or laugh anymore either does my brother and we both used to smile and laugh all the time before Accutane, this still persists to this day. If I didn't live It I wouldn't think believe it but it's what happened to me. Accutane really ruined my mind, body and soul. I guess that will happen when your pumping 40/ 80mg a day of 13-cis-retinoic acid in your developing body.Think about how ignorant my dermatologist was. He was giving a 16 year old boy who had literally a few pimples 80 mg a day of a retinoid that was proven to harm developing minds/nervous systems. My body is all messed up now, I just got diagnosed with IBS, and Kidney disease, and Generalized anxiety disorder. I just can't believe I'm a victim of corporate greed. My monocytes are low and the only two ways those are low is from toxin damage or chemotherapy ie Accutane. Thanks Hoffman La Roche for ruing my life along with tens of thousands. I hope all you corporate wigs burn in hell for profiting off hurting people!!!!!!!!!!!!!!
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My son started taking Accutane 2 years ago at the age of 16. He took it for 5 months, stopping a month early as his skin had cleared and he didn't like the side effects. Over the next year and a half I noticed occasional episodes of mild depression and moodiness in him which seemed out of character for him. He is a well adjusted, star athlete at his school, has many friends, president of his class, etc. He told me something had been bothering him but he didn't want to talk about it. Finally, he confided in me and my husband that he had started having problems with erections for the last year and a half and that it was causing his mood changes. I am a Physician Assistant, and so began questioning him and going back through anything that could be at the root of his problem. I am convinced that it was the Accutane. His ED started 3 months into treatment. I have explored all of the possible causes, talked with several doctors and urologists, and sifted through countless hours of medical literature. I found a urologist at a large teaching and research hospital near us that at least is open to the idea that it could be related. He is a urologist that specializes in ED, and told me that he has had only 1 other patient come to him suggesting that their ED is somehow related to taking Accutane.
The problem is just surfacing. Victims are to embarrassed to report, especially young men under the age of 18. Most teenage boys don't want to talk to their parents about their sex life. Also many people just don't make the connection because no one told them it was a possible side effect. My guess is that in a couple of years it will be "breaking news" that ED is a potentially permanent side effect of Accutane. As for my son, the urologist did some bloodwork which was all normal,including hormone levels. He gave him some samples of Cealis and Viagra to try, and my son said that they did help. If the problem persists we will get an ultrasound to check for possible bloodflow issues.
And by the way, I know that it is not related to drugs or alcohol use. I have been spot checking my son's urine and blood since he was 15 and able to drive! He has never tested positive.
Hang in there and don't give up. If your doctor tells you it's psychological, see someone else. I would recommend finding a urologist with an erectile dysfunction specialty at a larger hospital that is a research and teaching institution.
After a visit to Mayo clinic, a few pituitary hormone tests, and pituitary stimulation tests, I finally confirmed the source of the problem.
It is hypopituitarism. My MRI showed a relatively small pituitary to begin with, but I never had problems because it was producing enough hormones.
However, when I took Accutane, it caused most pituitary hormones to drop to low or low-normal levels. After Accutane, I had low TSH, low FSH, and low IGF-1. I also had the testosterone of a 90 year old male, with inappropriately normal LH. If testosterone is low, LH should not be normal; the pituitary should elevate LH to signal the testis to produce more testosterone. If it doesn't, then the pituitary (or hypothalamus) is not working properly. This is called hypogonadotrophic hypogonadism.
The articles I have posted above confirm that Accutane lowers pituitary hormones. In addition, my hypogonadal symptoms occured acutely while on Accutane and partialy diminished once stopping, so there is little doubt left that accutane causes hypopituitarism to susceptible individuals. What is not mentioned in the literature is that the damage may be permanent or long-term. If it causes apoptosis in sebaceous and meibomian gland cells, what would stop it from causing apoptosis in other glands as well, such as the pituitary gland?
When Crisler said in an interview that US endocrinologists know zilch about hormones, I was skeptical but, sadly, I found out the hard way how right he was. Yes, on lab reports, most of my hormone levels looked "normal", i.e. within lab range, so most endocrinologists thought my hormones were fine. Some of them suggested viagra or a penile implant (!) although I am only 33 years old. 8 out of 10 endocrinologists are not open to the fact that "normal" levels should be age-adjusted. You cannot consider the testosterone level of a 90 year old male normal for a 30 year old male. They were also happy that my LH was normal, and unable to recognize that it was inappropriately normal. It was only Alan Jacobs (neuroendocrinologist in NY city) that recognized this as a sign of hypogonadotrophic hypogonadism. But the growth hormone deficiency (due to hypopituitarism) was missed for another year, until I asked my endo for an IGF-1 test and, once that was abnormally low, a GH stimulation test. The test showed a zero GH response of the pituitary to stimulation!
I had to read hundreds of medical journal articles and see >50 doctors of all specialties before ending up in the right experts, doing the right tests, and zero in on the right treatments.
Anyway, since I confirmed the source of the problem I focused on treating the underlying cause. One can replace the missing hormones, but it is much better to restore their natural production by the body. I read guidelines on testosterone replacement therapy (such as those of John Crisler) but had to tweak them to suit my needs. I am doing well on low dose HCG + low dose testosterone gel. The usides and downsides of this protocol are detailed in Crisler's articles and interviews. Exogenous testosterone supressed natural production of testosterone by the testis, and LH & FSH by the pituitary. The upside of HCG is that it stimulates the testis to procuce testosterone naturaly, preventing testicular atrophy. However, it is still supressive to the pituitary. For this reason, I only take low doses that allow me to feel well but do not supress my pituitary too much. Moreover, to wake up my pituitary from time to time, I take a very low dose Clomid regimen for a week of every month or so. This stimulates the pituitary to produce LH and FSH. I feel much better in this regime, testis size has been restored (it was decreased for 1.5 years post-accutane) and muscle size is also beginning to be restored. Most importantly, I do not feel weak and exhausted like I did, and my heart pumps much better. I also found that Citicoline (an acetylchonine precursor) increases all pituitary hormones, which is perfect for me, and seems to have helped restore psychogenic erections (which were also lost for 1.5 years post-accutane). It increased my IGF-1 from 120 to 160, and I hope to increase it further to age-appropriate levels.
As I mentioned in other posts, I also developed autoimmune autonomic ganglionopathy after accutane. This is a potentially life-threatening autoimmune neuropathy mediated by neuronal acetylcholine receptor autoantibodies. The decreased number of alpha-3 acetylcholine receptors on my autonomic ganglia may be an extra reason why Citicoline helps me.
Hey Dubya,
The seizures were never confirmed on EEG, because I never had an episode when I was being monitored. But I do know that they stopped when I started a high dose antiepileptic drug (Oxcarbazepine).
The autoimmune dysautonomia and encephalitis have been 75% decreased, after 4 months of immunotherapy (intraveneous immunoglobulin). Each therapy costs 10000 euros and I have to do it every 6 weeks.... But it has given me my life back and insurance covers it.
As for the hypogonadal symptoms, I am fighting them with low dose testosterone gel, HCG, clomid and citicoline. I am having noticable improvement, but I am not back to normal.
Babis have your erections improved as well?
I am 34 and after one year off Accutane, my severe ED persists and my lab tests show very low total T 273ng/ml and LH.
I have seen an Urologist (a friend of mine from high school) and he suggested I start on Testesterone Gel to help with the erections which will help with the anxiety as well. However it seems TRT may effect fertility so I have not started taking that yet.
I do not suffer from any other sides.
I was on 20mg and taking accutane every other day.
I remember taking alcohol while I was on accutane on a couple of occasions.
Initially I was reluctant to use accutane. I had scalp acne and my sister (who is an MD herself) recommended I start using roaccutane which my dermatologist prescribed. She had used accutane with much higher doses and did not have any problems. I curse the day I took the first pill.
I woke up one day (during the 9th month) and my penis was not feeling like before and I realized I was not getting morning wood for sometime. I immediately stopped taking the drug hoping things will improve. My situation worsened steadily during last year and now I can not get erections without Viagra.
After reading the news about propecia causing permanent sexual side effects I started searching the internet and found [removed]. I did my first search with "accutane" and I was shocked to learn that accutane and propecia might actually result in the same sexual sides and my low T/LH and severe ED is a typical symptom. I could not sleep that night.
I am also concerned after reading in [removed] that not having morning wood and frequent erections might actually cause structural damage in the penis because of hypoxia and having low LH for long might cause testicular atrophy.
I am too scared now after reading that people still suffer with sexual sides after 10+ years.
I was planning to get married and have kids and it is depressing to realize that it might not be possible.
"The articles I have posted above confirm that Accutane lowers pituitary hormones. "
Babis which article are you referring to here?
I have just spoken to an endocrinologist and looking at my low T and low LH he told me that the problem looks like "hypogonadotrophic hypogonadism".
I will be seeing him for further tests, MRI this week.
He mentioned that he is not aware of any studies confirming accutane affects on pituitary.
It would be good if I could show him the study you mention here.
"The articles I have posted above confirm that Accutane lowers pituitary hormones. "
Babis which article are you referring to here?
I have just spoken to an endocrinologist and looking at my low T and low LH he told me that the problem looks like "hypogonadotrophic hypogonadism".
I will be seeing him for further tests, MRI this week.
He mentioned that he is not aware of any studies confirming accutane affects on pituitary.
It would be good if I could show him the study you mention here.
Well, I haven't visited the website for ages and you probably do not need my reply anymore, but here are the articles again:
Evidence for decreased androgens, neurosteroids and their receptors:
Evidence for decreased androgen 5 alpha-reduction in skin and liver of men with severe acne after 13-cis-retinoic acid treatment.
J Clin Endocrinol Metab. 1994 May;78(5):1064-9.
Effect of oral isotretinoin treatment on skin androgen receptor levels in male acneic patients.
J Clin Endocrinol Metab. 1995 Apr;80(4):1158-61.
Excerpt: "The present study clearly demonstrated a decrease in androgen receptor binding capacity... The isotretinoin-receptor complex may interact with cis-acting response elements in the promoter region of regulated genes, repressing the gene transcription encoding for the androgen receptor, the gene transcription encoding for the 5-alpha-reductase activity, or both transcriptions simultaneously."
Epigenetic side-effects of common pharmaceuticals: A potential new field in medicine and pharmacology.
Med Hypotheses. 2009 Nov;73(5):770-80.
Excerpt: " The following adverse effects have been reported to persist, even after discontinuing therapy, suggesting persistent (or perhaps slowly-reversing) gene expression changes and epigenetic effects: alopecia, arthralgias, ocular abnormalities, inflammatory bowel disease, keloids, osteopenia, hyperlipidemia, erectile dysfunction, and psychiatric disturbances. Isotretinoin is postulated to have complex effects on the brain and central nervous system."
13-cis-retinoic acid competitively inhibits 3 alpha-hydroxysteroid oxidation by retinol dehydrogenase RoDH-4: a mechanism for its anti-androgenic effects in sebaceous glands?
Biochem Biophys Res Commun. 2003 Mar 28;303(1):273-8.
Isotretinoin, tetracycline and circulating hormones in acne.
Acta Derm Venereol. 1997 Sep;77(5):394-6.
Effects of isotretinoin on male reproductive system.
Lancet. 1994 Jul 16;344(8916):198.
Erectile dysfunction during isotretinoin therapy.
Actas Urol Esp. 2005 Nov-Dec;29(10):974-6.
Acitretin-associated erectile dysfunction: a case report.
In animals treated with retinoids, testicular atrophy with spermatogenetic arrest was described:
Toxicology, carcinogenicity, and teratogenicity of some orally administered retinoids.
J Am Acad Dermatol. 1982 Apr;6(4 Pt 2 Suppl):652-9.
Retinoid receptors involved in the effects of retinoic acid on rat testis development.
Biol Reprod. 2001 May;64(5):1307-14.
In humans treated with retinoids, pituitary hormones (including LH and FSH), testosterone and IGF-1 where suppressed:
Isotretinoin influences pituitary hormone levels in acne patients.
Acta Derm Venereol. 2011 Jan;91(1):31-4.
Effects of chronic retinoid administration on pituitary function.
J Endocrinol Invest. 2005 Dec;28(11):961-4.
Short-term isotretinoin treatment decreases insulin-like growth factor-1 and insulin-like growth factor binding protein-3 levels: does isotretinoin affect growth hormone physiology?
Br J Dermatol. 2010 Apr;162(4):798-802
13-Cis-retinoic acid decreases hypothalamic cell number in vitro.
Neurosci Res. 2010 Nov;68(3):185-90
By the way, after an LHRH stimulation test and a number of other tests, my endocrinologist finally narrowed down the problem and diagnosed me with partial hypothalamic insufficiency (leading to low testosterone, low growth hormone, and low cortisol). So I have hypothalamic hypogonadism. The fact that accutane damages the hypothalamus is confirmed by the last four papers in the above list. (Of course, 99% of endocrinologists have never heard of this literature because they never prescribe accutane - dermatologists do - and dermatologists do not read endocrine journals).
Antisexaccutane,
I could write a novel on my past 10 years experience involving Accutane, but I'll try to keep it as short as possible. I started feeling my side effects about a year after taking Accutane. My side effects got increasingly worse up to years 3-5 post Accutane. At this point I had a list of side effects I had never experienced before in my life. Sexually, I could barely keep an erection even during masturbation. Getting hard ons from just looking or thinking about girls was a thing of the past. My orgasms became increasingly less satisfying. My ejaculate went from being strong, thick, and creamy to basically a water like substance. My urination problems were also during this time. I never had any pain or urinary tract infections, but my urine stream was about 20% of what it used to be. Also, when I was done urinating I would have to stand at the toilet for a couple of minutes to let the final drops of pee drip from my penis. In addition to this I also had insomnia. I swear there were weeks when I could only sleep about 20 hours despite being incredibly tired. My hair was falling out at a rapid rate. I had many nosebleeds. I became sensitive to the sun. Every time I went out into the sun a rash appeared on the inside of my elbow. Maybe the worst of my problems were joint, muscle, and back pain. I could probably think of other problems I had, but these were the worst. All of this led to depression to the point where I didn't care if I lived or not.
During years 3-5 post Accutane I tried a couple things to heal myself. I went to my doctor and told him about my struggles. He put me on an anti depressant (Lexapro) which made things even worse. I then went to a naturopathic doctor. She put me on many supplements and remedies. This was very expensive because insurance doesn't cover naturopaths, and the healing I received from this was definite but minimal. Then, about 5 years post Accutane I discovered fasting.
I tried a 35 day all water fast. I felt significantly better after this. I was not cured, but my side effects had improved a lot. I have done a total of 3 of these fasts in years 5-10 post Accutane. Every time my side effects got better. This is where I got my 75-80% health back. Fasting is not an instant cure, but it speeds up your body's recovery. It is difficult to do, but not as impossible as it sounds. The hardest part for me is finding the time to do it. If you even consider doing this I'm sure you will have many questions. I will try to answer questions you have, but there is an ABUNDANT amount of information on this subject on the Internet. As far as the sexual aspect, I have seen improvements there. My ejaculate is now thicker, and I can get better erections now than previously. My pee stream is a lot better than it used to be. Overall, I am about 75% fully recovered. I'm not back to the way I used to be, but I feel like I am on the way. I hope this helped.
This is interesting, could you go into the details of this fast? Did you only drink water, no vitamins or anything else? What was your water drinking schedule?
I tried a 2 day water fast after which I started having diziness and vertigo. After a month this has improved somewhat but I am now concerned that water fasting might do more harm than good in my case.
I am wondering if water fasting is safe with low T levels as it seems to be one of the few ways helping with recovery.
(I actually remember reading something about this but can't find it now.)
