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General Discussion
#1

Hi there,

Ive often wondered how many people actually visit this forum. Despite having 1500 odd members, it seems that there is typically a core group who post. Mew might be able to actually look at the stats, and i think they would be interesting.

It seems that many users sign up here and just make one post. Many here are not true post fin sufferers, and are just people who are taking fin / recently quit and are scared. Dont get me wrong, i think these people deserve help and reassurance, its just that they skew things. When i read the recovery section, it seems that 85% of them are normal recoveries. People who took the tablet for 5 days, quit for 5 days then say they feel better and dont come back. That is a little disconcerting for those of us with lingering effects, like me who took propecia for 11 years, and sides for almost 2 years. I will admit its somewhat annoying. The recovery section is the section i watch with great interest. I think there would be a number of people that cannot handle comming to this forum and i can understand this. I find if i read here a lot, it can upset me and cause greater mental anguish.

Anyway, please dont take this as an attack on the forum. I actually think this forum could save lives. I mean that in its literal sense. People come here, are educated on the effects and quit, perhaps before long term harm is done.

#2

I agree and am considering “pruning” the forum in the near future of inactive users, as well as implementing a different registration system which will help resolve these issues.

#3

Also: I believe I have noticed that persons who may have taken FIN for a ridiculously short amount of time later post their miraculous recovery regiment, and I don’t mean to knock them or I don’t know that they did not experience the syndrome or not, but we must assume that some number of people are experiencing the power of suggestion. Especially if the LABs are not coming back with wrecked levels. I would hope that the resilient human body can tolerate any attack that is only inflicted on it for a few days or weeks. (i would hope)

I also think this site saves lives and some of the posters sound like mensa level geniuses’ (such that I sometimes cannot follow all the scientific lingo)

I have tried to document some of the things which resonate over and over again in the more enlightened discussions like: lowering E and boosting T with all the natural supplements and also pharmaceuticals. It seems like this forum and Doctors Shippen, Goldstein and Cysler are all that that is right now.

#4

I can admit that this forum has been a HUGE life saver for me. I know I don’t post much, and it’s because I have nothing to constructive to add overall, and don’t want to scew results, which is already occurring to a large degree, especially as noted in the recovery section. As stated, some of the members are freakin Mensa genius, and I read this site 5-10 times EVERYDAY. I can only thank people like Mew for creating such a place, and even though it’s great, I must humbly admit too that some of the people with easy, natural recoveries after only using the drug for a couple days/weeks does become slightly annoying. At any rate I do love this site and all the great contributions the “core” team makes. I would be truly lost without them.

#5

It is definitely misleading to suggest we are a group of 1600 sufferers, since at least half seem to have not posted or disappear after they recover, decide to quit or not take the drug etc. There is probably only around a third of that with genuine problems, and probably an even smaller percentage who are badly messed up.

I think you should be wary of cutting off inactive users who do not post though as there seem to be lots who disappear for long periods but have major ongoing problems, while some of the regulars here are barely affected to any real degree.

Going by other websites like askapatient, health forums etc there are plenty others affected who don’t post but it’s quite galling to think there maybe aren’t too many of us. I think my long lasting sides must have about a 10 000 to 1 chance happening to the average fin user after stopping. I can’t believe anyone else with similar problems wouldn’t be on here constantly.

I also agree the recoveries section is annoying and needs trimming, even if there are only about five bona fide ones left.

#6

Well the only thing I have to say is that I hope everyone who has contributed to this particular thread has participated in the study by Dr Irwig.

Every single comment here would have taken longer than filling out the consent form and questionnaire.

It probably took me about 40 seconds to do both.

As a bona fide sufferer who has given every ounce of effort in the fight to get better (other chaps have as well), I would gladly punch in the face regular contributors to this site who haven’t. Really.

JN

#7

If you look at the study thread you will see that three of this thread’s contributors have taken part and one of the other two took dutasteride.

#8

Keep in mind that theres prolly alot of ppl who would love to contribute and take part in this study but dont meet the criteria, including myself.

Hope all of you that do meet the criteria get of your lazy asses and fill out the damn form so we can all get well!

Thanks :slight_smile:

#9

Keep in mind that theres prolly alot of ppl who would love to contribute and take part in this study but dont meet the criteria, including myself.

Same here

#10

I’m always surprised how many views my profile read has gotten, upwards of 4000. I think there are a lot of people out there with sides of some fashion but either don’t realize the effect or are trying to ignore it. There may be some users who created an account and abandoned the site but I think there are many more who view the site and have yet to create an account.

#11

I wonder if there are 14 people on the planet (let alone this forum) who fit the criteria of the study. The age range and the “no other medications” rules out an awful lot of people. Especailly considering that we are talking about a deomographic of humans who knowingly took a pill that alters their endrochronology to fix thier hair. There are people who are catious about taking pills, but regretfully we are not amonst them.

There are way more sufferers than on this forum. If you go to a side effects or hair loss site you will see a new post daily about someone questioning the sides. Also: the reason the doctor asks you what medications you are on everytime you go in is becase the adverage person always fails to connect the dots when it comes to the side effects of meds.

If there was no forum, how many of us would have attributed brain fog and fatigue to FIN, years after discontinuing the drug?

ED? GYNO? yes. but vision issues, anxiety, fatigue? probobly not.

Its like lead in the aquaducts or mercury in the hats. People might know “something” is up, but it can be tough to solve these things for yourself.

#12

Martin,

I agree with you. I believe this, because I was one of those guys. I came on the website about 2 years before I joined. I read a few of the posts and I thought these people are just hypochondriacs. I guess I didn’t really look at things very objectively. Sometime after that I got much worse and then quit the drug.

I do beleive the amount of men that even have slight hormonal problems caused from this drug is extremly large number of men. Most of them don’t want to admit they have a problem.

#13

I’d be cautious of deleting too many people without ensuring they don’t have a genuine reason to access this site. I probably fit the bill of someone who doesn’t post here very much (practically never), but I’m constantly browsing the site and am in communication with a few posters by way of PM. I’ve also used the odd resource posted here to show to the doctors that I have visited. I don’t post for the major reason that, at this stage, I have nothing meaningful to contribute. Also, I tend to browse as a guest (not deliberately, I just forget to log in). Anything that restricted my access (or that of any number of other people in a similar situation to me) mightn’t be a great idea as we’re trying to spread awareness & collate information related to this condition on one site.

QFT. I only come here when I’m down about the condition. That isn’t a slight against anyone here, & I’m absolutely committed to helping out anyway I can (& will be moreso over the coming months), but I try not to let it interfere with my life too much & the reality is, most long-term users here have a pretty depressing story to tell.