I feel I need to get this off my chest, when I first crashed because of Finasteride within a few days I landed on propeciahelp seeking advice but nobody here had warned me to stay away from Ketoconazole a known 5 alpha reductase inhibitor which was prescribed to me by my doctor that I had been using for about a year with no side effects but this eventually lead to a much worsening of my condition as I remember vividly being in the shower using it and my hands and feet went numb that eventually lead to the most severe neuropathy a human could imagine. I had all the hallmarks of Guillain barre syndrome except doctors said it wasn’t so something deep inside at the cellular level was going haywire; a microglia cell dysfunction of some sort and eventually I crashed a few days later while eating in a Cafe. Moving on I was sent to a Psychologist who prescribed me Sertraline and yet no warnings were given to me about it being a 5alpha reductase inhibitor from anybody and at 6 weeks I felt no beneficial effects whatsoever and stopped cold turkey, during this period my pain amplified 10 fold, I was crying for hours every single day, I was curled up in a ball in my room with my parents continuously keeping me on suicide watch and even had neighbors complain to a family friend they had never heard cries like it that’s the type of physical pain I was in just torture. Months on I realized that I had lost the entire subcutaneous fat from my face and the hard layer from the soles of my feet every step now feels like I’m walking on bone, my entire physiology has changed from an athletic build to someone who is frail and weak with bulging disks in my back. I guess what I’m saying to people here is that you have NO idea just how bad it can get I promise you, I have seen people take their lives for much sinister issues here but in my current state I’d doubt there would be anyone alive on this forum.
If this is going to be a refuge for people who have been hit by Finasteride then there shouldn’t be any mention of supplements whatsoever and past History of them should be deleted, you have people coming here who are in critically vulnerable states who are desperate and will use confirmational bias to try something out of desperation that could inflict serious untold damage and these people are in no states to be influenced by previous users. Two supplements that were recommended here by individuals absolutely destroyed me causing me to loss hearing in both ears and as a consequence I now have debilitating hyperacusis, extreme tinnitus and vestibular damage drastically reducing my hopes of at least being able to cope with PFS in fact it was the reason I ended up in a psyche ward for 3 months because I was going to take my own life.
When I got hit by this drug from a single pill I did everything in my power to get the word out that meant making personal videos, statuses on social media and contacting every newspaper, politician, radio stations I could find even going onto hair loss forums and telling my story despite the abuse from people who were pro Finasteride but that didn’t matter to me I was saving life’s and young men from the destruction that I had faced with many who were on the fence about taking it thanking me personally. If I had of known there was individuals who were hit by one pill of this poison before me there isn’t a hope in hell I’d have touched it so apart of me does feel resentment because there was people here before me that were hit with one pill and yet their stories were hidden away from the public in the dark corners of the internet and that is why I’m reluctant in partaking in community projects when mods aren’t as forthcoming to do the same and look lads I really do like some of you but that’s just honesty speaking.
Another thing, I do feel that there is an unrealistic view in acquiring government funding for this disease, I started a group that now has 10k members with many being injured from pharmaceuticals, you soon realize the complexity of the issues and seeing the amount of scandals and government cover ups with other medications is so shocking that I don’t believe they would willingly hand over millions to undermine regulatory agencies like the MHRA who are fully funded by the pharmaceutical industry through licensing fees. For hearsay if a grant was issued and scientists soon uncovered that Finasteride did in fact cause a mutation in individuals leading to permanent damage this would soon leave Merck and Co open for liable action and that just isn’t going to happen I’m afraid. The only way is through private funding, perhaps pooling resources and starting fundraising campaigns instead of waiting on the unknown. Also there is lack of awareness on social media of which I have stressed before, why is this of significance? because it has over a billion users and it much easier to reach the masses. With my story alone I had people reach out to me that aren’t on this website one was a young man from my local town with a tiny population and another was a women who took two pills and was displaying an array of symptoms months on so to me I’m thinking there must be a boat load of others suffering and not connecting the dots, I just think limiting yourselves to one website is detrimental to the cause.