In recent months, several patients have contacted us about a significant and seemingly permanent worsening of their condition. We have also seen an uptick in other such reports on our platform and elsewhere, including one report of suicide. Sadly, each of these reports occurred after further therapeutic intervention, many involving apparent disruption of androgen signalling.
We would firstly like to remind patients to exercise an extreme degree of caution when engaging in such therapeutic interventions, whether either directly or under the care of a physician. One of the key features of this disease is that many patients exhibit a marked susceptibility to further worsening. The clinical record shows this is particularly notable when anti-androgens are involved, or when there are perturbations in androgen signalling.
Some of the worst reported cases involve patients going back on finasteride or other potent anti-androgens. These cases can report feeling much better at first - in some instances, experiencing full symptom relief - before quickly entering a state which is catastrophically worse. Many of these events preceded suicide.
We have also seen an uptick in reports proposing very dangerous interventions, such as the following:
“microdoses” of 5-alpha-reductase inhibitors, such as finasteride and dutasteride (https://pubmed.ncbi.nlm.nih.gov/10495374/)
progesterone (https://pubmed.ncbi.nlm.nih.gov/1828548/)
sulforaphane (https://pubmed.ncbi.nlm.nih.gov/19805354/)
calcium d-glucarate (https://pubmed.ncbi.nlm.nih.gov/9101079/)
sodium valproate (https://pubmed.ncbi.nlm.nih.gov/29940375/)
cyproheptadine (https://pubmed.ncbi.nlm.nih.gov/7387003/)
spironolactone (https://pubmed.ncbi.nlm.nih.gov/166833/)
ketoconazole (https://pubmed.ncbi.nlm.nih.gov/6291475/)
lupron (https://pmc.ncbi.nlm.nih.gov/articles/PMC3278745/)
bicalutamide (https://pmc.ncbi.nlm.nih.gov/articles/PMC3099172/)
histone deacetylase inhibitors, HDACi (https://pubmed.ncbi.nlm.nih.gov/33195208/)
“temporary chemical castration”
The above list only contains dangerous items that we have seen gaining traction recently, and is by no means a conclusive list of substances that should be avoided. If you are unsure whether a substance is anti-androgenic, or whether it is harmful, we advise to err on the side of extreme caution.
There is a clinical record spanning decades (mostly contained within propeciahelp.com) which shows that anti-androgenic re-exposure is highly dangerous, and that it is not a way out of this condition.
A reminder of our platform policies
A rule exists on our platforms to prevent patients from prescribing such interventions to other patients. It is simple: Describe, don’t prescribe.
We take this incredibly seriously and it is our number one rule for a reason.
As a charity pursuing meaningful progress towards scientific understanding, we are duty-bound to patient safety. While investigation is underway, we understand this disease affects patients acutely and there is a desperate need for symptomatic relief.
Our group has managed patient platforms for almost eight years and we are usually responsible for dealing with the fallout of such interventions. Every member of our team has personally encountered multiple suicides. We often see our prescribing rule lamented and ignored by patients, who feel they are adults and can make their own decisions. There historically has been a common sentiment of “things can’t get any worse”, although it has been heartening to see more patients aware of the risks in recent years.
A reminder to take care of each other
While scientific progress is our primary focus - and well underway - our second focus is trying to keep everyone in one piece.
We have all been unfairly burdened with this disease. Living with it, without symptomatic relief, is something that none of us should have to endure. For that reason, we ask you to be kind and take care of each other.
If something has worked for you, that is great, and we are truly thrilled for you. But please be aware that it may be catastrophically damaging for your fellow patients, and act accordingly.
Please take care of yourselves & each other.
Mitch & PFS Network team