Survey Results: Comparing Symptoms from Finasteride, Isotretinoin and Anti-Depressants

#1

This is the first of a set of analytic tools which is looking at the comparison of symptoms between the drug classes/substances Finasteride, Isotretinoin and Anti-Depressants. At this time we did not include other substances because there currently is not enough data.

This first table covers the questions we specifically devised to assess our condition. We also had a number of standard scientific inventories, which will be processed next.

Even though some symptoms vary considerably between drugs, the overlap is striking.

Overview by Domain

The following graph shows what proportion of survey respondents reported at least one side effects in the respective domains (mental & emotional, physical & neurological, sexual):

The next chart shows how severe the respondents reported their symptoms to be on average per Domain:

In the past, certain literature and many news articles have focused primarily on the sexual side effects, particularly in the case of finasteride. In reality though, our numbers clearly show that mental & emotional symptoms are just as frequent, but even more severe than the sexual ones. Additionally, physical and neurological problems are seldom mentioned. However, our data shows that these are just as bad. Here we are making a clear statement to journalists but also scientists, who are often painting an incomplete picture of PFS et.: Do your homework, and represent this syndrome correctly please!

Details by Question

How to use and interpret:

  • Fin=Finasteride, Adp=Antidepressant, Iso=Isotretinoin
  • C=Counts, %=Percentage of Respondents, S=Avg. Severity (score 0-100%)
  • All columns can be sorted by clicking on them
  • Scroll right with scroll bar inside table
  • Use the page controls to page through the data
  • If you want to filter only those above certain min. score, put your value in “Min. Score” box
  • All data can be downloaded with down arrow at bottom of table

Overall respondents per drug for above questions

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

Return to Survey Basics Category for overview

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#3

Were there any side effects listed that are not typically associated with PFS as a type of control? Or do we have any people without PFS taking the survey? I wonder how a non-sufferer would compare to us. I feel like just seeing a side effect listed increases the rate at which people report that side effect. I wonder if you put something silly like “itchy ears” how many people would report experiencing that side. For example, it says that 56 percent of people experience derealization, yet if you look through the forum the number of people who actually have DP/DR is much lower. I use this an example because I have this symptom so I ravaged the site looking for others who share this symptom.

#4

Perhaps I didn’t get this across correctly. The number you are looking at is:
sum(score of all respondents per drug) / number of respondents
score varies

I will do another chart shortly that shows number of reports per symptom, irrespective of severity (which is what you thought you were looking at). In any case, thanks for critically looking at these numbers.

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#5

I’m still confused - it’s my fault not yours. Is this saying “56% of survey participants reported experiencing DP/DR?” Can you fix my statement?

#6

No, my first table reports average symptom severity, which I understand might be somewhat misleading. Symptom severity for each response is scored between 0-100%, the higher the number the worse the symptom. The thing to consider here is that many people may report a very low severity, while fewer may each report a very high severity. Which is more significant? Well, both are, they just represent different viewpoints on the same data.

Over the next days I will provide a second table which will answer the exact question you are asking: What proportion of respondents reported a symptom, regardless of the severity. The analysis of our survey data is very complex and challenging, and so is the interpretation. It is through questions like yours, and challenges to the methodology, that we will arrive at a coherent interpretation which we all can agree on, and which makes sense. In essence, this is the scientific process. In any case, thanks for your interest.

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#7

Absolutely - also selfishly interested in the amount of people who reported my symtoms at x threshold. Meaning I don’t really care about the person who experienced DP/DR for 20 minutes when having a panic attack. I care about the number of people who reported it chronically and indicated a level of severity at high or significantly high. This will shed light unto the number of people who are actually suffering the symptom like I am. Also I’m not asking for a customized report :slight_smile: just showing you where my head is at because you seem interested. Anyways, just like I reported weight changes right after the crash, but I don’t think it was a direct result of my pfs - it was a result of me being scared out of my mind and not eating. Same thing happens when a family member is in the hospital. For the people truly suffering with weight issues, my data point is noise at best, and at worst it skews the data in an unrepresentative way.

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#8

An unusual characteristic/symptom like you describe might skew the data, but this will certainly lose significance among a greater number of respondents, becoming nothing but noise, as you say.

If not, then it may be considered to be part of the wider syndrome.

Anyone, is this the correct way to view this?

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#9

Yes, that is why a large number of respondents is so important. The more people participate, the more representative the numbers will become.

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#10

This was the first thing I noticed, it seems like the lowest inclusion of symptoms is around 66% for all finasteride users surveyed. If we included an objectively non-related symptom and still had such a large “yes” for all users I think the first thing someone would say is that you’re dealing with a bunch of hypochondriacs. “Did your dog start working out after finasteride?” - 66% users said yes! Like oh okay…makes sense

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#11

There you go. Reworked the report to (hopefully) be easier to understand. You were interested in “how many” and “percentage of survey participants”, while I was focused on severity. Now I included both. For how many, check out the “C” columns, while percentage of participants is in the “%” columns. Your threshold x you can enter in the min. score box. So for example, if you are interested in how many people reported a severity of 70% for the listed symptoms, just enter 70 in the box and then you can read the counts in the “C” columns.

Does that make more sense now?

Of course there might be some suggestion bias here. But after all the same methodology was used in other PFS related clinical studies, so you can consider the data to be at least as valid. Note that we also included a number of scientifically validated inventories in the questionnaire. Those will be analyzed down the road. That data is even more precise because the basic questionnaire has been validated through many studies, but the scope of the questions is more limited. In any case, we did our best to follow best practices where ever we could. For example, all scales that we have used are scientifically validated for the type of questions we are asking.
In any case, the quality will improve as we get more participation.

I hope you will find surfing the data interesting.

#12

this is awesome, thank you so much. So now the %Fin column represents the number of people who experienced the symptoms while the “S” column represents the average severity? This makes perfect sense - was it just a coincidence the %Fin column for derealization stayed at 56%?

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#13

Almost. The “C” column represents the number of people, the % column what percentage of those who took the survey (basically C divided by the total in the second table below). And correct, “S” is severity. It would appear that frequent side effects also tend to be more severe. I will need to look into that some more. But there are examples where this is not true, take “Abnormally low resting heart rate (Bradycardia)” for example. Only around 8% of FIN users seem to have it, but when they do have it, it’s quite severe with over 60% severity.

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#14

Wonderful work Awor.

One interesting observation is that muscle weakness seems to be much higher with isotretinoin than finasteride or anti depressants. Perhaps if a teen is exceptionally skinny that would then give an indication of possible usage of this drug that the teen may have not thought was influential. The https://www.rxlist.com/accutane-drug.htm#side_effects page also lists mylagia and arthalagia as rare side effects, but does not list muscle wastage and weakness.

#15

Thanks. Muscle wasting is much more similar and at a fairly high level.

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#16

Indeed, percentage wise it is remarkably lower in occurrence among finasteride patients, but the severity of those affected is close among all three classes of drugs.

#17

For ssri and isotretinoin there are also women, while in finasteride no, I think. This can lower the percentage of symptoms for pssd and post-isotretinoin as male symptoms like erectile dysfunction, premature ejaculation, low semen volume etc…?

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#18

Good point. This was lingering in my mind, but you are of course right regarding percentage of respondents figures. I have now filtered the results to include only male respondents. Once we get a few more female respondents, I will create a separate report for females. Thanks for catching that.

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#19

If I was a woman I probably wouldn’t be bothered much by my PAS. Or at least, I would have probably moved on with my life by now and be hardly ever thinking about it anymore. In fact, I once dated a girl who had never had an orgasm in her life and last I talked she still hadn’t, yet she always was very happy and has gone on to have a great marriage, children, etc. Sexual dysfunction is a life show-stopper for men but can practically go unnoticed for women. In a literal sense it prevents men from being able to be fathers and husbands, however for women it is not a direct obstacle to those life ambitions at all. It’s terrible for both men and women, but it’s worse for men. So I wouldn’t be surprised if there were far fewer female respondents than male respondents.

#20

Well, that’s you and I have heard from almost all women with PAS how terribly they miss having a strong libido, romantic connection, and sexual pleasure by its own right. One of them said she never had an orgasm but still enjoyed sex greatly until PAS hit.

Sort of reminiscent of someone saying we don’t have it that bad because most of us can get hard with viagra, so it’s not as if we have a right to complain about not being able to have sex.

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