How many people suffer from PFS and do you think there will be a cure soon?

General Discussion
#54

Absolutely! It does make one wonder how many cases of this are attributed to “psychogenic” origins. Without physical symptoms, one could easily be convinced of this because of a combination of depression and ED, and this seems to be the most commonly used catch-all diagnosis by doctors who hear of these types of complaints occurring together in the absence of very low hormone levels.

The “post-Accutane” case mentioned did sound like a very mild case and probably doesn’t know to this day. I am no longer on good enough terms with the person who informed me of his problem to get into contact with them, and it would be too awkward of a situation since they confided in me of his problem. The sensitive nature is another hurdle of spreading awareness to those affected.

Agree in regards to “PADS” as a more comprehensive, but still technically accurate, reference to PFS, but I think this needs more discussion on when and what the impact of doing this may be.

1 Like
#55

Eh, I don’t think anyone will care about flying to another country.

1 Like
#56

I’ve got my passport ready.

In reference to awor’s suggestion to start using the term PADS… How does using “PADS/PFS” sound until they are easily recognized as one in the same?

btw- Hi borax!

1 Like
#58

PADS sounds not right. Fin fucked us and was developped by M. Thats the fact. We dont need any distraction from that. PSSD, POIS, PAS… do not have their root in deprivation of androgens. So, pfs is the right expression. And once again: M.do not admit pfs is existent. Bum, thats it. End of story. They give a shit about US, you have to know. A shit. They even might think about US how stupid we were or are. They will do it AS long AS they make money with that. Periode. You can wait until your death - no cure will occur. Thats the point. And unfortunately, we know it, feel it. The foundation is good for psychological support.

#59

Noprop, your meltdown is not helping. I understand you may be in a bad moment. Many of us have been there. But this is not productive. I don’t care about Merck. I care about getting better. Maybe we won’t ever get better. But we don’t know yet. There is still so much we have to do and can do in terms of research. Let’s focus on that. Then maybe we get lucky and find treatment or a cure, or maybe we hit a dead-end that we cannot overcome. We don’t know. But let’s find out first, before we give up. I’d rather go down with a fight and the knowledge that we tried our best, then give up like that.

2 Likes
#60

Saying “end of story”, “no question”, “we know it” doesn’t actually make it the end of the story, unquestionable or something we know. I don’t agree with any of that except the statement merck developed finasteride. All those drugs, along with leuprorelin, dutasteride and the fruit of the saw palmetto plant (I somehow doubt grew in a conspiracy to destroy a tiny amount of men - perhaps I’m wrong) sharply reduce intracellularly available active androgens. I am not aware of another significant similar pharmacological property between these substances. You posted in another topic:

We do have helpful results. Most importantly immunohistochemistry has proven a persistent and significant overexpression of the androgen receptor, so something important is happening in the androgen pathway - something nearly every cell line depends on - and is causing a range of systemic effects that vary quite wildly in severity and tissue specificity between sufferers. This has led to more detailed investigation, through which I’m hopeful we’ll soon learn more of what is happening and have a clearer route to follow. If you’re not interested nor hopeful of any progress, I’m curious as to why you’re making a lot of posts filled with negativity regarding the hard work of others alongside saying we need helpful results. Suggesting it is heroic that people publicly commit suicide is certainly a deeply irresponsible thing to be posting; some here are in a very serious and fragile condition. It would not be heroic. It would be completely strategically useless and another tragedy, so please don’t post such things again.

6 Likes
#61

I’d support changing the name to PADS, and anything that helps tie in all the people that have been affected by this is a good thing.
I don’t know about other people but even if I had to take a drug like Sage 217 for the rest of my life to have improvements I’d be ok with that.

1 Like
#62

Easiest choice ever (if safe). Afterall, I was ready to take a pill everyday to combat hairloss. I’d to worse things to get my life back.

1 Like
#63

“Nothing is more important to Merck than the safety of our medicines and the people who use them. Merck stands behind the demonstrated safety and efficacy profile of PROPECIA (finasteride), which has been prescribed to millions of men since its FDA approval in the U.S. in 1997. Merck conducted well-designed clinical trials on the product and stands behind the results, which were reported to the FDA and regulatory agencies around the world.”

1 Like
#64

I’d happily take a pill everyday if it could regulate my androgens body wide, for me I’d rather the physical stuff fixed before the mental as the physical will always effect my meantal state, my hope is that our underlying blueprints, genes have most likely not been damaged, so it’s just getting the body to repair itself, i know that’s probably very hard since my skin is extremely decayed underneath, lipodystrophy, thinner dermis I’d say etc, but technology is increasing very rapidly, imagine 20 year’s ago thinking the whole world would be connected by something you can hold in your hand, you can search for any type of information abd get it instantly, nobody would of believed you, they’d say your insane. I believe stuff we think now is impossible, will turn out to be very very possible indeed.

2 Likes
#65

There is clear scientific evidence that proves otherwise, at least for certain SSRI’s and isotretinoin. At some point I will start a new topic to discuss the similarities of those drugs at a biological level. However, we will not continue discussing this subject in the current topic, as to not derail it.

1 Like
#66

Unfortunately it seems from my other threads nobody can help me with my saliva gland dysfunction that’s ruining my life.

#67

have u tried drinking tons of water? think I read somewhere DHT regulates the glands producing tears and saliva on this forum

1 Like
#68

It doesn’t work. It never solves it. There just be someone with the same problem. Have they recovered? It’s been almost a year :frowning:

#69

Why wasn’t I told this when it was recommended to me? I wouldn’t have taken it. Can function be restored?

#70

I’ve started seeing Dr. Alan Jacobs, a neuroendocrinologist… he’s been supportive of the PFS community for years… he was the first doctor (in the string I’ve tried) to get the right type of testosterone test where it showed my free T levels vs. total… going by the total, some other doctors thought I didn’t have an issue. Right now my T is below normal and estradiol is beyond the high limit… thought i was going to give birth soon! Well… I’ll share anything that I find out though him.

1 Like
#71

Do not lose sight of the importance temporary recoveries signify. Since I got PFS in January 2017 I have had six recoveries where everything which ails me returns to normal, including full erections, libido, clarity of mind and motivation. Others have reported similar patterns.

How could this mechanism even be possible if we were permanently damaged? Perhaps it’s transiency is due to compensatory feedback taking over in the body to readjust some hormone or neurotransmitter level, and for that brief period where levels are ín range’’, normalcy of function returns.

But the very fact that this is possible indicates the real possibility that a pharmacological solution may be within reach which enables such a state to persist.

5 Likes
#72

Orthogs, good and interesting post. What did you do or intake before having relief?

#73

I think Orthogs is right too. I’ve had a couple of ups and downs that have been complete reversals of my situation, where the change has been so complete that I assumed that I was done with this.

1 Like
#74

A good question. I wish I knew… I know with one of my recoveries (Dec 2017) I was with a friend at a Lebanese restaurant and drank a few cups of aniseed tea, which I’d never had before. Within an hour I felt sleepy and then much better. Lasted for two days. According to my research aniseed, like licorice may may have mild anti-androgenic properties. Whether that was enough to bring about a recovery, I don’t know.

1 Like