Lost in Medication. Ask your doctor about the sexual side-effects of your meds. Based on Adam and Eve painting by Lucas Cranach the Elder in 1526. © Billiam James 2014
The title for the post comes from the W Allen movie Everything you Wanted to Know about Sex * But were Afraid to Ask. Not a title that has worn well with time.
We have things we don’t know about sex. You may be able to help a lot of people with any answers you can find.
The word researcher here means someone who has sexual problems on or following isotretinoin. It does not mean university folk. You rather than anyone in a laboratory have skin in this game and, as a result, more motivation to find answers.
Is there any hint of a dose response link between isotretinoin and sexual dysfunction – is the problem less likely with lower doses and more likely with higher doses? In the cell systems in which we are exploring p 63 and ACE2 isotretinoin in higher doses kills cells. SSRIs can do this too but it kicks in earlier with isotretinoin.
One complication is that this may be linked to the metabolic pathway for isotretinoin – two people given the same dose might have very different blood levels if they are fast or slow metabolizers of this drug. So we need to know the pathway through which it is broken down. Do metabolic enzymes affect isotretinoin blood levels?
If metabolic enzymes are playing a part, we also need to know what other drugs affect this system and might cause isotretinoin blood levels to rise.
There are very few dermatologists who acknowledge the existence of isotretinoin induced sexual dysfunction. They should be the obvious people to ask about these issues. If anyone knows a friendly dermatologist, could you ask them – otherwise we need citizen research to answer these questions.
We also need to know for sure if those with post isotretinoin sexual dysfunction had sexual problems on isotretinoin before stopping it and finding they had enduring sexual problems.
Close to 100% of people on SSRIs have sexual changes after their first pill.
We want anyone’s sense as to how many from 100 people who start isotretinoin will have no sexual problems on or after the drug and how many have problems on it. If you don’t have grounds for a hunch on this one – don’t just guess for the sake of it. The real answer will need a study – but in the meantime we need informed guesses – are there any readers with post-isotretinoin syndrome who had minimal or no sexual problems while on the drug?
We need the same questions answered for finasteride.
Metformin is one of the dark horses in the race to find an answer to PSSD and related conditions. It appears to act on p 63 and ACE2 systems in the same way as SSRIs, isotretinoin and finasteride.
It could be that lots of drugs act this way, which would undercut our current research ideas, but it seems that metformin can cause sexual dysfunction and possibly an enduring sexual dysfunction also.
It may contribute to the peripheral neuropathy found in diabetes.
We need people who have been on metformin who can report on its sexual effects to us – RxISK has metformin reports with SSRI-like adverse effects but not for sexual dysfunction.
We need to know things in detail – such as whether there is genital numbing and muted orgasm and whether the problems endure after stopping and even get worse after stopping.
Apart from this, Metformin is a wonderful drug. Perhaps the only major drug discovered in Ireland – 101 years ago. There are probably some people in Ireland though who might not tell you it was discovered in the Protestant University and not the Catholic one.
We need input on possible visual problems people have following isotretinoin, finasteride, or metformin. In a recent vision post we outlined that many people on SSRIs and some with PSSD describe visual problems that are quite PSSD like in that they start on treatment or after stopping and in either case can endure for months or years afterwards.
It happens that there are retinal cell lines we may be able to explore for PSSD like effects.
It also happens that there is a line of cells on the margin separating the Iris and the Pupil of the eye and these contain p 63 proteins and act as Stem Cells. If you have had scarring of your pupil, these cells can be used to repair the scar.
This approach can also be used to cure babies born with Epidermolysis Bullosa – literally giving them a new skin.
Google Michele de Luca or Gene Therapy for Butterfly Babies for more on this extraordinary story..
We have had some amazing input from people sending links to work on prokineticin and kisspeptin and other research which could well link to Sexual Dysfunction.
We now need people to research drugs labels and other data for answers to the questions above.
We need research on FDA, EMA and MHRA databases to find if there are reports of sexual dysfunction on metformin and if there is anything similar to PSSD on other drugs.
There will be lots of sexual dysfunction on other drugs, but we need to know if there is something similar to PRSD, PFS or PSSD – or PGAD.
Above all however we need people who have a metformin or other drug induced sexual dysfunction to send us reports of what happens to them that would enable us to work out the extent to which this resembles PSSD and then test the drug in Luisa Guerrini’s system to see if the physiological effects are also the same.
My forecast is sadly that in 5 years and 10 years nothing has been solved, since not everything can be cured.
Even finding causing factors is difficult and efforts are erratic (I intentionally say FACTORS because the drugs are most likely just one piece in the puzzle, that can have variable pieces to cause same outcomes)
The best lead to VALIDATE is neuropathy, but it seems that all efforts are chaotic regarding that too.
Over confident psychotic home scientists come up with new theories like always before, and the clueless poor people go into a hype about them, until nothing happens and the theory and its maker disappears.
Regarding warning about the risks and informed consent there is no change and l dont see it coming. The EMA label is a vague mention and doctors say nothing about it.
New cases flow in as always before.
I am afraid my prediction will hold true in 5, 10 and any number of years.
Well we are lucky to have large reddit group, looking into a 99k Diabetes group i just found 2 weak evidences of sexual problems :
I did not contacted them to make sure they didn’t taken any AD before. Seems like it’s way harder to find people having sexual issues along Diabetics. It’s known Metformin affect sex but not nearly as strong as AD’s do in my opinion.
Thanks for this. Very helpful to get this input
I think you should consider my theory of isotretinoin forcing cells to divide extremly fast causing aging like side effects. This is supported by the fact that i got my wisdom teeth at 14 ( which is when i took roaccutane) and also my growth plates on my knee fused around the same time.
Also the typical side effect of roaccutane worsening acne at first can also be explained by this.
There is a lot to agree with on this. Isotretinoin may be a little more severe than SSRIs and finasteride in this respect. Just as thalidomide is.
But we need to establish what the roots of the problem are rather than look at the worst cases where the damage is far more extensive
There is a call to action, but where can we submit our findings? I do know a dermatologist who I can speak to about this.
Good if you can post your findings here or is a more formal letter then email to David.Healy@RxISK.org
Thank you, I will reach out after my next visit on March 22nd.