Survey Results: Information about Drug Taken

[awor]

The following tables and charts provide an overview of drugs taken and associated timelines. You can hover your mouse over charts to see more details.

An interesting insight is that almost 40% of all respondents developed “PFS” (used interchangeably for PAS/PSSD) after only 3 months or less. The curve flattens out considerably for longer durations. In the past some doctors have suggested that the risk increases with duration of use. This is turning out to be wrong.

Please support this project by participating in the survey if you have not already done so.

Return to Survey Basics Category for overview

[Mcbbould]

Hi awor - I wonder if this is because of duration of use or because of susceptibility to PFS. My theory is that some of us get harsh reactions pretty quickly, which then causes us to cease the drug. If you can take it for a long time maybe that just means your body can handle it. For me, I wouldn’t have dreamed of continuing because of how harsh my reaction was.

[holyhead]

I got one set of symptoms while taking the drug then another different set of symptoms after stopping…

[awor]

@Mcbbould

I wonder if this is because of duration of use or because of susceptibility to PFS

Yes, it makes a lot of sense that the two are linked. Down the road I will be doing some clustering to detect if guys who only took it shortly have higher symptom scores than those who quit after years of use.

[awor]

@holyhead

I got one set of symptoms while taking the drug then another different set of symptoms after stopping

Will keep this in mind when proceeding with the analysis, we should be able to detect this in our overall data if it is common.

[axolotl]

@awor

An interesting insight is that almost 40% of all respondents developed “PFS” (used interchangeably for PAS/PSSD) after only 3 months or less. The curve flattens out considerably for longer durations. In the past some doctors have suggested that the risk increases with duration of use. This is turning out to be wrong.

This is just so great. So much stuff we knew but could not illustrate before, and stuff that could not be calculated outside of having this data, is emerging in clear terms. Very powerful stuff. Thank you so much to everyone participating. If you haven’t: Please do!

[Mcbbould]

Also - to increase participation, I know we all have”buddies” on the site that we communicate with through PM or other means. I think it would be great for folks to reach out to their “buddies” and remind them of the survey and it’s importance. We can hold each other more accountable

[orthogs]

I’m eagerly awaiting the therapeutic section of this. Would be fascinating to correlate successful treatments with symptom profile and time of onset, etc. Just finding correlations between variables could yield some interesting or even useful insights. I do, of course, understand any motivation to avoid releasing this with haste, as it may lessen the incentives for others to complete the survey as well as potentially cause risky experimentation which otherwise wouldn’t occur.

[awor]

@orthogs

Would be fascinating to correlate successful treatments with symptom profile and time of onset, etc.

The main challenge at this point is the manpower required to roll out all this stuff. Remember we still have the GWAS project ahead of us as well, where an objective would be to correlate case profiles with treatment responses (as you said), but also 23andMe data in the sense of “personalized medicine”. All of this I am currently doing all by myself, while @axolotl is working on his paper, which is also super important, his health permitting.

On the other hand we have too many in the community who are not even prepared to invest one hour of their time into filling out this survey that Axo and I literally invested over 1000 hours into creating. Our response rate currently is under 15%, despite all who got the invite being active forum users. But some of the same people seem to find the time to invest countless hours into discussions about theories and what not, probably assuming that the cure is just around the corner and directly linked to the number of people they can convince about their ideas. This kind of thing has been going on for over 16 years now, with a pretty modest learning effect it appears. Btw, I am not bashing diy experimentation or anything like that, just the one-sidedness of some mindsets. I understand, many are in panic and want to get out of here cured asap. Though, as I said many times before, putting all the eggs into one basket is never a good idea. Hopefully one or two will reconsider his/her priorities, and participate in the survey when possible.

Since the relaunch of propeciahelp, I had the intention of turning this into a more of a “open source” type community project, with the hope that more people would help shoulder the work load so we can advance faster. So once again: If someone who is reading this would like to contribute to these projects in a meaningful way, and has any of the following skills:

• strong background in statistics
• moderate to good SQL programming skills
• experience with the statistics software package R
• experience with the PLINK software or GWAS in any context
• background in bioinformatics and/or biology

Please drop me a line. If no one will, this project will continue advancing at a pace determined by the time I can invest, which will continue being slow in terms of progress.

[Northern_Star]

Ha, for the first time ever I wish I had paid more attention to my statistics classes in university.

In the spirit of cross community collaboration, I also quoted your post on the PSSD forum. I hope you don’t mind.

[awor]

@Northern_Star

I also quoted your post on the PSSD forum

Yes, please do, and keep that flow of PSSD’lers going. With each PSSD submission the overlap is getting increasingly clear. I just wish we could also get more isotretinoin folks to participate as well. If we can get enough cross-drug data together through this survey, the days of ignoring and downplaying our disease will hopefully soon be over.

[Tzinkman]

@awor

On the other hand we have too many in the community who are not even prepared to invest one hour of their time into filling out this survey that Axo and I literally invested over 1000 hours into creating. Our response rate currently is under 15%, despite all who got the invite being active forum users.

This is utterly scandalous and makes me question whether half of the users of this forum even have this affliction; and if they do, theirs must be so mild in effect that they can afford to ignore this incredibly easy to fill out survey. If you find this statement controversial and offensive, I’m open to hearing your explanation as to why you think filling out the survey isn’t worth your while.

If you have any interest in having this issue genuinely progressed, by real scientists and not the speculations of forum quackery, TAKE THE SURVEY. You can even fill it out in ten minute increments and it will remember your responses.

Thank you @axolotl and @awor for first developing the survey and now reporting some of the results in this easy to read format.

An interesting insight is that almost 40% of all respondents developed “PFS” (used interchangeably for PAS/PSSD) after only 3 months or less. The curve flattens out considerably for longer durations. In the past some doctors have suggested that the risk increases with duration of use. This is turning out to be wrong.

In the “Doctors and researchers speaking out” section of the foundation’s website, the second quote featured is this:

We are certainly very cautious, because we see the side effects. We wouldn’t recommend that any man take [finasteride], especially not young men. The longer they take it, the greater the risk of experiencing persistent side effects, including after they’ve stopped.

In light of the emerging findings, I think that quote should be demoted down the list of quotes. Its prominence as the second quote, and its content, suggest that finasteride is more dangerous with longer duration of use when it is seemingly the case that if you are predisposed to pfs then duration of use is irrelevant.

[Ukguy82]

@awor

Our response rate currently is under 15%, despite all who got the invite being active forum users. But some of the same people seem to find the time to invest countless hours into

Major thanks to @awor and everyone working on the survey. Come on guys a 15% response rate is rubbish. It hardly takes any time to complete so get filling in when you can there’s no excuse, what have you got to loose.

[dj91]

I am an epidemiologist so I may be able to help in some capacity. What is needed?

[awor]

Thanks, I will pm you.

[awor]

We currently have 9 Saw Palmetto cases. If we can hit 20, I will list SP as one of the main substances covered alongside with Finasteride, Anti-Depressants and Isotretinoin. In other words, they will get their own data set. Saw Palmetto needs more exposure, because this poison is commonly peddled as a natural (therefore safe) remedy to BPH and other problems. I am pretty sure that the damage that Saw Palmetto Extract based preparations is doing out there is huge, without the affected people making the link.

[Sawproblemo]

I’ll do the survey soon. It took me two years to make the link

[axolotl]

Thanks @Sawproblemo - please, please try and get it done in the next couple of weeks if you get a chance.

[anacleta]

Could I know the frequency of the various ssris and snris among the surveys on antidepressants?