I crashed on Olanzapine after having PFS and now my life is over. I was put on them in the emergency ward when I didn’t understand what could happen. Every second of my life is pure torture now. Completely lobotomised, and on top of that my body is now completely wasting (skin, muscle, bone, tissue). I am bed bound and in extreme torment.
I’ve seen multiple cases now where a PFS patients crashes from antipsychotics and then commits suicide. Two examples are Zadig777 and Conall (from the PFSN YouTube). We need to get the word out that antipsychotics are even more damaging to PFS patients than SSRIs. This is because antipsychotics act as agonists for not only dopamine receptors, but for many others too. They cause both PFS and PSSD symptoms, and maybe even dopamine receptor issues too. It’s like getting hit across every front.
I don’t know how much longer I can hold on. My only wish is that someone else does not share this fate.
Keep holding on. You’re more than likely in the roughest part of this as you are still VERY early on. You have a lot of time to recover even though it doesn’t seem like it right now. We’re gonna get this figured out, but we need to come together as a community. You’re becoming a modern day warrior by going through this. Make this pain worth something. Use it to make a difference in the lives of thousands of men and women by being a part of the movement that finds a cure.
As bad as my physical symptoms now are (full PFS wastage / AR silencing), it’s the mental symptoms that are suicide inducing. If I could somehow improve in that aspect it would go a long way in keeping me here. However, I don’t know if that will be the case given this is a severe second crash (maybe even a third, I feel like it hit me twice).
The brain is plastic. That means it has the ability to change, modify its connections, and rewire. It’s an incredible organ. Most people see a lot of progress in the mental/neurological symptoms overtime. There’s a high likelihood you will too. I know this forum can be a source of support, but there’s also got a lot of negativity that I personally think needs to change. It becomes a self fulfilling prophesy when all you read about is how peoples lives are destroyed. When you hear that, it becomes easy to just wanna give up and assume there’s no reason to fight. Take a deep breath, try and relax, and believe in your body’s ability to recover. I know the crashes suck. I’m sorry you’re going through this, but stay strong.
hang in there brother. there’s alot of progress being made in science. not even just directly related to our initiatives
for example, prostate cancer therapy research is related to our situation and progress in that domain also helps us out. theres new solutions made and being studied to restore AR signaling. we just have to be patient
i know its really hard for you but just think of it as a challenge to build resiliency to endure the worst hell on earth. when you come out on the other side you’ll be tough as steel. reframe everything youre going through as a challenge to overcome
im in a rough spot as well, not nearly as bad as you but bad enough to be miserable every second im awake and i keep myself going by reframing everything. it has to be done repetitively over and over but eventually you’ll find yourself having more strength (at least i did anyway.)
How long will we have to wait? The severe cases are on a timer, physically (deteriorating) and mentally (snapping). I want to use hope to get me through this but our disease isn’t even recognised yet. If someone told me there would be a cure in 5 years, then I will hold on. But how do we know there will be a cure within that time? CRISPR technology is moving along fast which is promising, but insight into our condition is severely lacking. I pray for some sort of revolutionary advancement that can detect deregulated genes and help all sufferers of post drug syndromes.
The timeline is arbitrary, which I understand can be discouraging, but it’s dependent on us. My personalbelief is that with a solid team we can find a cure for this within 5 years. Seems impossible for some, but overcoming the impossible is the part of the human spirit. It starts with figuring out the mechanism though. There’s great things happening behind the scenes right now. If you’d like to talk, DM me and I’ll send you my Whats App number. Hang in there, brother.
Good point. I believe the mechanism behind all post drug diseases is the same, so I imagine that, in the future, treatment will be highly customised to each patient. Hopefully the overlapping mechanisms will speed up the whole process. I think we need some way of mapping out a person’s genome to see what the damage is and what to target for methylation / demethylisation.
I do hope we’ll eventually observe real practical implementation of such kind of treatment. But as we don’t know, when exactly anything like that will be available, we still need to hold on at the moment. I know how hard it could be sometimes, but we need to keep going. So please, don’t give up.
when it comes to the tools that can potentially cure us, that timeline is moving really fast. everything from CRISPR to compounds that revive AR signaling
the question remains which ones will help us and how, and that part is dependant on us. the faster we get our research done the faster we can start matching potential solutions.
good news is we’re pretty close to start 2 studies on PFS
and coincidentally, the word is 5 years to find a cure is pretty realistic for some potential solutions, but that depends on us.
listen bro, the point of reframing your mental state is so that you’re not dependant on a hail mary-esque news/breakthrough in science.
you should build the mental fortitude so you can endure hardship for a lifetime if it comes to that.
Yo estoy tomando de estos que me ha recetado el psiquiatra debido a que mis lados mentales han empeorando y claramente me siento algo peor sobre todo en la niebla mental
Eduardi, you need to taper off EXTREMELY slowly. Do not risk another crash. It will end you. Stay away from all pharmaceuticals. If you need advice please message me.
This is the most optimistic read on the situation I’ve read from a member of the moderation team in some time. Has so much really changed since Awor discussed the state of the science, pre-Baylor, back in 2009?
I know it’s easy to point to advances in the use of CRISPR, but that technology itself was an entirely unpredictable breakthrough. I personally think it’s reaching to expect that this condition will have an etiology that yields to CRISPR, and on a budget that anyone here would be able to afford. I’d be happy to be wrong of course!
I 100% crashed again two weeks after discontinuation of the antipsychotic. I went from having mild PFS to severe PFS. It was night and day. They are definitely anti-androgenic. It was as if I took Fin again.
Yeah 5 years for a novel treatment is very optimistic. That being said, hopefully with 2-3 studies we will have a mechanistic understanding of what exactly is causing the permanent overexpression/toxicity in affected tissues.
At that point we might be able to use existing compounds rather than CRISPR. The reason self experimentation has failed thus far is that we have had no idea whether the receptors are silenced, have acquired toxic gain of function or are malfunctioning in another way. When we find out, the second era of experimentation may actually yield something.
I wouldn’t be too surprised if the thing that fixes the receptors ends up being some random combination involving proviron, HDACIs or AR antagonists. But this is all pure speculation until we uncover the root cause.
To strengthen my warning that antipsychotics can cause severe PFS, let me provide some further case studies:
Gavia: She originally developed PSSD from escitalopram. Her thread mentions she started taking Olanzapine for sleep. Low and behold, she then experienced severe PFS symptoms, including whole body wastage, shortly after but no one made the connection. The novel thing here is she never used finasteride yet developed full blown PFS! Why? Because antipsychotics are anti-androgenic. It’s all in her thread, and the dots are there to connect. She hasn’t been heard from in a while.
Bringitback aka Luckfax: He had mild PFS for years, recovered, then took Quetiapine for sleep and developed full blown PFS including whole body wastage. He’s in a bad place now. Look up his post history, it’s all there. He is PFSGuy on TikTok. Luckfax, if you’re reading this, please hang in there.
Kan: Had mild PFS for years. Spoke of crashing from Olanzapine after being diagnosed as delusional in 2019. Reported full blown PFS symptoms (once again, including full body wastage). Hasn’t been heard from since.
Balph (me): Had mild PFS, was diagnosed as delusional and put on Olanzapine. Crashed one and a half weeks later and developed full blown PFS, including full body wastage.
Robin Williams: Had PFS, then was prescribed Quetiapine to deal with his symptoms (he did not know what was causing his issues). His toxicology report showed he had Mirtazapine in his system at the time of his death, which would have also contributed.
The commonality between each of these cases is that the antipsychotic causes severe PFS after a post-drug condition (PSSD, mild PFS etc.) is already established.
I am documenting this pattern because the dangers of antipsychotics have not yet been established in this forum, at least to any meaningful extent.
im not a staff member and take what i said with a grain of salt please
its just what ive heard from people in talks with doctors and scientists, but you never know how information can get taken out of context and twisted
that being said, we should be optimistic because of all the advances in the technology like CRISPR and other compounds by looking at stuff that is related to us (prostate cancer treatment research and advancements)
regarding cost of CRISPR, not saying it will be cheap, but technology usually becomes affordable over time.
Just to add to what you said. There already exist numerous epigenomic therapy companies with extremely well credentialed teams who are pioneering platforms which can precisely target gene expression and alter the chromatin landscape.
CRISPR and base editing isn’t even 10 years old and here we are with numerous epigenetic editing companies… Once the mechanism is discovered and we can successfully launch large scale class action lawsuits who is to say we can’t go directly to them and pay them to develop a targeted treatment, should one be needed.
@Eduardi Hola Eduardo, hermano, cómo va? He visto tu post de dutasteride.
En mi caso yo he caído tras solo 3 píldoras de dutasteride…:). Por el momento ansiedad extrema, falta de sudor e intenso insomnio. Por suerte el dichoso brainfrog mejoró bastante (aunque no estoy seguro de que al 100% pues no he salido apenas se casa este mes.
Tu insomnio sigue igual de mal? Un abrazo muy fuerte compañero
sobre todo en la niebla mental