Forum Replies Created
May 2, 2017 at 1:44 am #2137
Thanks for this. Great information all-around. Especially in regards to the second study you cited.
There was a post-Finasteride study published last year, which included brain imaging, showing similar alterations in brain function.Not sure what interest Bremner may have in performing further studies on Accutane patients. Roche put him through a hell of professional harassment over the study. The head of the psychiatry department at Bremner’s university, Charles Nemeroff, is also rumored to have come down hard on him for publishing.FYI- One person I am in contact with had luck with PT-144, but he said it worked more like Viagra, rather than something that actually boosted libido. He goes by “dave22k” on some Accutane-related forums. Think he may have posted his experience on All Things Male.
April 26, 2017 at 3:47 am #2119
Assuming the risperdal recovery you are speaking of is Paulo, he later admitted to going on a bit of a rant during some stressful times and that the risperdal didn’t help in the long run.
Also, if you haven’t done so yet, please report your side effects. You don’t have to go through a doctor to do it. There is a link to the FDA Medwatch reporting system on the “report your side effects” page on this site.
April 25, 2017 at 9:01 pm #2117
The stigma of having sexual problems prevents many people from discussing or reporting them. Doctors find it unbelievable since it is so rarely discussed. This is also likely to be a rare side effect among a small percentage of those who use Accutane.
I have used dopamine agonists. The benefit was minimal. I also have normal muscle mass and body hair growth.
There is the possibility that the effects of Accutane that lead to sexual dysfunction are focused on the central nervous system in many of us. The same has recently been discovered of post-finasteride patients with side-effects similar to ours:
April 25, 2017 at 8:08 pm #2115
Hello. Thanks for commenting.
I have been the same as you since quitting Accutane 17+ years ago. Tried several different types of hormone replacement therapy and none worked. There have been a handful of anecdotal recoveries from Accutane-induced sexual dysfunction, from several different types of treatments, but not one appears to be reproducible. Most of the recovery stories come from people who have only suffered side effects for a few months to a year, so they are more than likely natural recoveries. …When long-term sufferers try those same exact treatments, it never works.
The most talked-about remedies have probably been water fasts, cannabis, and finasteride (would strongly advise against finasteride).
This site is dedicated to finding scientific explanations for why this happens to some of us. Hopefully, once we know what went wrong, we can do something to treat it.
February 12, 2017 at 10:21 pm #2027
Thanks. Another interesting bit is the column on the far right of that table denotes the presence of RAR and RXR response elements in the regulatory regions in many of the genes being studied. Nice that the authors presented that in the info.
Besides 5-a reductase type-I, it is also worth pointing out the 6-fold decrease in HSD3B1 (encodes the 3b-HSD type-I enzyme) during Accutane treatment. This enzyme is responsible for conversion of pregnenolone and DHEA into all other steroid hormones. These include androgens, estrogens, progestins, and gluccocorticoids (“cortisols”). It is a critical step in the pathway of steroid hormone biosynthesis.
There is a second gene encoding a second isoform of the enzyme that is not included on the table in the study. Not sure if it was ignored, or not found to be influenced by isotretinoin. Type-II mRNA is more highly expressed in steroidogenic tissues and the type-I is mRNA more pronounced in peripheral tissues, including skin, retina, and prostate.
mRNA expression and estimated protein expression levels can be found on these pages:
There was also a 4-fold decrease in HIST1H1C mRNA. This encodes histone H1.2, which is a DNA scaffolding protein thought to link DNA-wrapped nucleosomes together. But its role in regulating gene expression is unclear at the moment.
January 17, 2017 at 3:34 pm #1980
Editing time has been adjusted from 5 minutes to 1 day.
Also, the activity stream will be removed if a fix cannot be found.
September 8, 2016 at 6:26 pm #1954
Thanks. This has been brought to the attention of the head admin along with a solution. Should be fixed in the next couple weeks.
September 6, 2016 at 10:02 pm #1951
forgottendreams said on acne.org regarding Dr John Santmann:
Right, I completely understand he isn’t our “friend” and that the only solution is to form our own initiative, like they have done.
Not necessarily true. I only say that I cannot put words into his mouth because I haven’t spoken to him directly about it. Pete, Awor and I had a discussion a couple years ago about the potential to set up a separate fund for scientific research into mental/depressive symptoms caused by Accutane and for that fund to be managed by the PFSF. We simply cannot expect the foundation or anyone involved to actually put up money for our cause because the donations sent to them thus far are not intended for that. That does not mean they have refused to help us in some way.
That was a couple years ago though, and we may need to stand on our own at this point.
I literally sent out hundreds of emails to doctors, universities and researchers – almost no response. A researcher in Brasil who has researched Vit A toxicity got back to me a few times (his articles scare the hell out of me) but expressed concerns about the difficulties in researching such a drug as accutane; the fear factor re the pharmaceutical companies – I kid you not!
There are 4 charities in the US who invite applications from people who are suffering from rare/genetic disorders. They have doctors that research the conditions. I got no response from any of them.
You would think Doug Bremner would take up our cause but I got no response from him either. (Only see him discuss depression and brain damage from accutane).
We should all bombard David Healy – I at least got a response from him but only to say that no research was going on. He said that my situation was very grave but that he couldn’t help me because he gets hundreds of emails from people like me every day and that there is nothing that he can say that will help. I was in a bad way when I contacted him and I did not find his response helpful. However I do think he is in a position to speak out in the media if enough pressure was put on him. He knows the damage that accutane causes and he should be doing more to help!!
If we had representatives from this forum that was able to put forward a case we might actually get more response.
I think you, Dubya or Indigo would all be great for this. I wish indigo would do more youtube, but be more aggressive about getting the message out there about accutane and the long lasting side effects. I wish in his pod casts he would act as a spokesman for all the stories that he hears and knows about, not just his own personal experience. I know this is a big ask but I really think he would be a great representative for us all.
He would need a lot of help of course.
If we could build up enough credibility and media attention it would eventually lead to some research being done.
What we need is one of them daytime shows to interview someone like Indigo and then ask people who have taken accutane to get in touch and give their stories. I though there were quite a lot of shows in the US that do this type of thing.
Some of you must have seen the interview that Paul gave about propecia on the ‘this morning’ show UK, it garnered a lot of media attention which will certainly help him with his claim for compensation.
I know a group of parents set up a action group but they no longer exist and it’s hard to get info on them as all their websites were shut down.
That’s what we really need again but it takes man-power, money and commitment.
I really like the way you are thinking Accuity – keep driving things forward!
Thanks for going through the trouble of contacting scientists. As you mentioned, there is fear among researchers of “biting the hand that feeds” when it comes to adding supporting evidence of drug side effects. This was said to be a major concern when the PSFS was soliciting scientists to help. The drug companies give generously to many universities and the universities would not be happy about one of their own doing anything to jeopardize that relationship. Not sure what we can do except keep trying.
Dr. Bremner’s focus is on Accutane’s effect on the brain and it makes sense that he would not have much interest i n sexual side effects alone. Nevertheless, he is currently making a movie parodying his clash with Roche that is to be released in the next year: The Goose That Laid the Golden Egg. He is on our side and we can hopefully share a mutually beneficial alliance with him. When that movie comes out, it will give us an opportunity to make some noise again.
Same with Dr. Healy. He is on our side. He believes those of us with sexual dysfunction from Accutane suffer from a form of PSSD, but can only do so much to help. He has done quite a bit to publicize the horrors of drug side effects and featured several stories about Accutane, Propecia, SSRIs, and Lupron on the RxISK site over several consecutive weeks.
They will both be approached regarding this site once we gain momentum.
Like your idea about posting our Accutane stories on youtube. Some of us must maintain our anonymity because of our careers, but it doesn’t matter much to me any longer. I will post a video sometime this fall. Would only encourage anyone who wishes to do this to take their time in planning and preparing for their video.
September 6, 2016 at 9:43 pm #1950
Hi Pete, Hi Crank.
Thanks for dropping in. On vacation for the first time in years this week, so don’t have much time to put into the site till I return.
As you can see, we’ve had several new members join lastingsides.org in the matter of a couple days last week and start posting. For some reason, the conversation was carried over to acne.org.
Glad to have some people on board, but we need to get to the bottom of why this site isn’t being used. If there are technical difficulties, they need to be made known and addressed. Report them in this thread. If it is the core message of androgen deprivation being an overlapping component of the MOA and many side effects of all drugs featured on the site that is turning some people off, the message needs to get out that people won’t be restricted from using the Accutane forum simply for not supporting that particular hypothesis and that we only ask that any theorizing be supported with information directly from journal-published sources. (If you can find it on Google Scholar, it’s probably good.)
August 29, 2016 at 8:52 pm #1932
Thanks. Noticed Prof. Peter McCaffrey was one of the authors. Pretty certain he spoke at one of the congressional hearings regarding Accutane and performed that study you posted with funding provided by Liam Grant of the Roaccutane action group. May be a bit of a conflict of interest, but that never seems to come into question when an industry-funded study is provided to the FDA or published in a dermatology journal.
Two more studies showing that Accutane causes a “functional dissociation” between serotogenic cells in the raphe nuclei and the hippocampus without altering the number of hippocampal cells:
K. C. O’Reilly, J. Shumake, S. J. Bailey, F. Gonzalez-Lima, and M. A. Lane, “Chronic 13-cis-retinoic acid administration disrupts network interactions between the raphe nuclei and the hippocampal system in young adult mice,” European Journal of Pharmacology, vol. 605, no. 1–3, pp. 68–77, Mar. 2009.
Previously, we showed that chronic administration of 13-cis-retinoic acid (13-cis-RA) induces depression-related behaviors in mice and that 13-cis-RA alters components of the serotonergic system in vitro. Work by others has shown that 13-cis-RA reduces hippocampal neurogenesis in mice and orbitofrontal cortex metabolism in humans. In the current study, we measured cytochrome oxidase activity, a metabolic marker that reflects steady state neuronal energy demand, in various regions of the brain to determine the effects of 13-cis-RA on neuronal metabolic activity and network interactions between the raphe nuclei and the hippocampal system. Brain cytochrome oxidase activity in young adult male mice was analyzed following 6 weeks of daily 13-cis-RA (1 mg/kg) or vehicle injection and behavioral testing. Chronic 13-cis-RA administration significantly decreased cytochrome oxidase activity only in the inferior rostral linear nucleus of the raphe. However, covariance analysis of interregional correlations in cytochrome oxidase activity revealed that 13-cis-RA treatment caused a functional uncoupling between the dorsal raphe nuclei and the hippocampus. Furthermore, a path analysis indicated that a network comprising lateral habenula to dorsal raphe to hippocampus was effectively uncoupled in 13-cis-RA treated animals. Finally, cytochrome oxidase activity in the dentate gyrus of 13-cis-RA treated mice was inversely correlated with depression-related behavior. Taken together, these data show that 13-cis-RA alters raphe metabolism and disrupts functional connectivity between the raphe nuclei and the hippocampal formation, which may contribute to the observed increase in depression-related behaviors.
The following by the same team of authors appears to contradict some of the statements in the first study
These data show that apoptotic actions of 13-cis-RA do not occur in vivo at drug concentrations that induce changes in depression-related behaviour and functional uncoupling of the DRN and hippocampus. The potential pro-depressant behavioural and molecular effects associated with chronic administration of 13-cis-RA may result from changes in serotoninergic activity rather than changes in the number of serotoninergic neurons.
Another study in that series:
In addition to their established role in nervous system development, vitamin A and related retinoids are emerging as regulators of adult brain function. Accutane (13-cis-retinoic acid, isotretinoin) treatment has been reported to increase depression in humans. Recently, we showed that chronic administration of 13-cis-retinoic acid (13-cis-RA) to adolescent male mice increased depression-related behaviors. Here, we have examined whether 13-cis-RA regulates components involved in serotonergic neurotransmission in vitro. We used the RN46A-B14 cell line, derived from rat embryonic raphe nuclei. This cell line synthesizes serotonin (5-hydroxytryptamine, 5-HT) and expresses the 5-HT1A receptor and the serotonin reuptake transporter (SERT). Cells were treated with 0, 2.5, or 10 μM 13-cis-RA for 48 or 96 hrs, and the levels of 5-HT; its metabolite, 5-hydroxyindoleacetic acid (5HIAA); 5-HT1A receptor; and SERT were determined. Treatment with 13-cis-RA for 96 hrs increased the intracellular levels of 5-HT and tended to increase intra-cellular 5HIAA levels. Furthermore, 48 hrs of treatment with 2.5 and 10 μM 13-cis-RA significantly increased 5-HT1A protein to 168.5 ± 20.0% and 148.7 ± 2.2% of control respectively. SERT protein levels were significantly increased to 142.5 ± 11.1% and 119.2 ± 3.6% of control by 48 hrs of treatment with 2.5 and 10 μM of 13-cis-RA respectively. Increases in both 5-HT1A receptor and SERT proteins may lead to decreased serotonin availability at synapses. Such an effect of 13-cis-RA could contribute to the increased depression-related behaviors we have shown in mice.
There is some more info on how neurosteroids may be involved in this but that can wait for another day/post.
August 29, 2016 at 5:24 am #1929
Understood. After so long, all the fine details become lost and the events get “unstuck” from when they occurred.
Now I can only remember some of what happened because I wrote my memories from 1999 down back in 2010. I still get small glimpses of feeling somewhat as I was before Accutane but these moments keep getting further apart as time goes by.
August 29, 2016 at 4:46 am #1927
Everything I feel, good or bad, is a watered-down version of what I used to feel….
…The best way I can describe it to a healthy person is to think about how you mentally feel when you have a bad cold or the flu.
I also thought it was simply an illness such as a long-lasting flu at first because that was the closest thing I had ever experienced to the post-Accutane state before.
There are probably many of us with both sexual dysfunction and blunted emotions who are 50/50 on which they would rather have remedied if it was a choice between one or the other. You mentioned having loss of libido from Accutane in addition to pre-existing ED. Do you feel as if that was part of the altered emotional state of mind, or something separate?
btw- Welcome to the forum friend.
August 29, 2016 at 4:04 am #1925
Hi Crank. Never heard your full story in one go before but your pre-crash period does sound very similar to my experience. I had the intense upsurge in libido and energy levels before crashing; although, my only gastrointestinal symptom was constipation a few weeks into each course, rather than diarrhea. Even shit a bit of blood when I would use the bathroom from about the 3rd to 8th week of my first course. Only time in my life I have experienced that, but it subsided while still on the drug and hasn’t been a problem since.
Speaking with a PFSer recently about how high intensity exercise makes him feel worse. One of the post-tane guys said the same. On the other hand, I noticed I will almost consistently have brief wood the morning after doing squats and it’s a rare event for me to have morning wood these days. Tried the cannabis oil at high doses for a couple months and it did nothing for me though, just the typical “side-effects” of cannabis.
Glad to hear you are doing relatively well compared to a few years ago. Looking forward to you finishing med school and having another sympathetic post-Accutane doctor with first-hand experience with dealing with this condition.
May 21, 2017 at 12:59 am #2183
Done. Posted a link on solvepfs.
May 12, 2017 at 7:24 am #2152
Hi Bigmum. Welcome to the forum!
Moved your post from the RxISK database discussion to here since you brought up a good point.
My GP prescribed Sertraline after I sought help to treat ED from Accutane, which makes no sense. This made it almost impossible to orgasm and worsened numbness! In addition, I went through some of the worst depression in my life while on it. Thankfully, these effects mostly wore-off around a month after taking the last dose.
It’s pretty common for people who got hit with side effects from Propecia or Accutane to have antidepressants pushed on them that make the situation worse.
I have also heard several unfortunate anecdotes from people who used Propecia or Saw Palmetto to treat hair loss that resulted from Accutane.