How many people are there in the world who for the reason of 5ar inhibitor suffer from the condition of pfs?
There’s no formal figure.
We know it’s very rare.
I always try to estimate this myself. It’s hard to determine because how many suffer very mild persistant effects without even knowing it? Would those be considered PFS? As for the severe cases of “full blown PFS”. I feel it’s around 1000 or so
Which leads me to what are the odds of getting full blown PFS? Just going off feel my best guess is something around 1 in 5000
I would love to have the actual data on this but that will take being able to accurately diagnose the condition which we are nowhere close to at this point.
I think it’s best not to think about it too much, even though it’s a tempting topic to wonder about. It’s pretty common for people in unusual situations to want to find others like them, for a sense of comfort and that they’re not alone.
However, we must accept that although likely underreported, this condition is rare. The rarity is still obviously unknown, but a conservative estimate could be gleaned by using Merck’s own clinical trials data.
There was definitely 1 participant of 323 in their five year clinical trials who had stopped using finasteride who still had sexual dysfunction 66 days later. 6 others had persistent sexual dysfunction when the trials completed but it is unknown whether they had stopped the drug. 1 of 323 = 0.03%, 7 of 323 = 2.1%.
It’s impossible with the tools available to the public to get a figure of how many men have individually been prescribed the drug over 25 odd years. You can find total prescription data, but it doesn’t show you how many men individually. Even still, you can apply the percentages above to different “total population” sizes to get an estimate.
0.3 * 10 million = 30,000
2.1 * 10 million = 210,000
0.3 * 20 million = 60,000
2.1 * 20 million = 420,000
So on, so forth.
It’s much more likely that we’re looking at very low single digits of men who take the drug who develop PFS, but even still, the total population size is pretty significant. 30,000 patients is a very significant number in totality and should be seen as a source of strength not hopelessness. The degree of severity for patients likely varies from 1-2 mild symptoms that don’t really bother the patient and have never really impacted their life, and those people have probably never even heard of PFS, visited the forum, etc. For example, Axo took one dosage of the drug 5-6 years before he developed PFS and had some unexplained muscle wastage and weight problems that were never associated with the drug. Although it impacted his life, he was still able to live a life that he very much enjoyed. Then there’s a percentage of us who are moderately to severely affected.
In summary, the total number is unknown and will be for a long time, but it’s not likely to be millions at this point. The prescription of these drugs online is reaching prolific levels, so it will continue to increase, but the narrative that there are millions of us is very unlikely to be true.
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