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 
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.
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?
Yes, that is why a large number of respondents is so important. The more people participate, the more representative the numbers will become.
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
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.
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%?
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.
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.
Thanks. Muscle wasting is much more similar and at a fairly high level.
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.
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…?
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.
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.
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.
Yes it’s terrible for both but women are able to move on with their lives (get married, have kids, etc) whereas men more often can’t, so it wouldn’t be surprising if a smaller proportion of women with PAS end up represented in survey than men. If no one accounts for the greater life obstacle it presents to men then they might misinterpret the greater male response as lower incidence of PAS in females. In other words, I can see high potential for this being mistaken for a primarily male problem when in actuality it isn’t.
I can see your point @vkg1 but I wonder how helpful it is to say it. If I was a woman suffering terrible sexual symptoms that are largely unrecognised by doctors and the world of medicine, would I be more or less inclined to join a community that is predominantly male when I see members of that community saying “it’s not so bad for women”?
I might have tuned out after reading this line.
I agree with Greek and Dubya. It is an unfortunate post at best, vkg1.
Sex is not only about kids. It is also about passion, intimacy and fun. All this can go missing under this condition. Many men here can get „artificial“ boners with meds and could technically impregnate a woman. In fact, that is probably true for most of us, but here we are. I doubt many women can just overlook all that has gone missing, just because technically they can still have kids. You see a lot of women involved in the PSSD community.
The bigger problem with PAS patients is that they appear to be less organized than the PFS and PSSD communities.
While I understand your general point and understand that you don’t mean to belittle the suffering of women, your post could easily be understood in this way, especially looking at the first sentence. A lot of men here can still have sex, technically, but haven’t moved on.
We want to encourage more women to participate here, so let’s be More welcoming and let’s try to avoid misunderstandings.
Do we have similar data for post dutasteride patients that will be published?
I specifically said it’s “terrible for both men and women” so why write all this stuff about how terrible it is? It is more of a show stopper for men, because men require arousal for sex more than women do. I do hope you are able to appreciate this physical fact. As I said, the point was that we should not interpret lower female response to survey as lower incidence in females.
I was arguing that we should recognise these syndromes as just as much of a problem among women as men even if survey response from women is lower. I bet you money survey response is lower among women. It is, isn’t it? If you read my post, the whole point was that we should recognise and avoid the temptation to minimise the impact on women. I was arguing for recognition of victimisation of women.
I don’t appreciation having what I’ve written to encourage increased recognition of the impact on women being called “unfortunate”.
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