Brother, how much fin did you use? Is it correct you also did one single dose?
Im praying for you that you’ll bounce back from this hellhole.
this disease is just so cruel, sorry to hear that this is happening to you, was there anything that bought it on?
I agree with what others have said times like these you just have to be strong and realise that it won’t be this bad forever. Good luck dude.
Same here. Be strong. Maybe you could see a rheumathologist, no way you can talk about PFS, but just explain your symptoms. Tried and drugs were no help, but it can be different for you.
Can’t move guys I’ve never felt pain like this in my entire life my whole joints are clicking and popping even the bones in my fingers hurt. Does anyone know if sodium butyrate increases testosterone? The anxiety has also increased to unparalleled levels heart rate is constantly elevated.
2 Likes
Hi, Papasmurf.
Do you have osteoarthritis?
I think so damn those recommending butyrate thinking they have Post Finasteride Syndrome worked out. I think it must have raised testosterone too high and the little androgen receptors I have that actually work have clearly got overwhelmed and shut down now my entire skeletal frame is collapsing, my body can’t support its own weight all I’m hearing is “click, pop!” the tendons and ligaments feel as though they have disintegrated completely even my teeth and jaw are excruciating. My pain level right now is sitting at about a 9 for the first time since I have got PFS I started looking up ways to commit suicide. My life is over
3 Likes
I know you are in hell mate but suicide is not the answer. 
I hope and pray it settles down a bit as I know supps etc make you worse. Your with me in my thoughts daily.
2 Likes
Hey buddy,
its very sad to see what You are going through. I know what getting worse is like because I messed myself up after some reckless antimycotics treatment and I was left in a very severe state. So severe that I had to call an ambulance and actually spent over a month in a hospital in total in two terms. I saw no light at the end of the tunnel as well. I dont even know how I managed to survive through that nightmare for almost a year without any real improving. First glimpses of hope came only after almost a year and today is over two years when all this happened and I almost fully recovered from that worsening. Its a distant memory now, I survived that horror. I write this to give You the very needed strength and hope through the nightmare You are currently going through - to let You know and remind You that there is light at the end of the tunnel. Please, try to tough Yourself through this period to see Yourself that things can get better. Life is something that cannot be brought back - but Your health is. I will say a prayer for You (I know its being ridiculed by some, but I will anyway). Please, try to hold on my friend, life is not over, its worth it to survive through these times - trust me that bad times wont last forever. I wish You lots of strength, patience and good luck
4 Likes
@Papasmurf How long ago did you try sodium butyrate; is that what precipitated the worsening you describe in the opening post of this thread? What caused you to try it; did you see a recommendation or was it your own research?
I’ve also had the same experience with sodium butyrate multiple times (until I singled it out as the culprit). It gives me that unbearable «dried out» feeling, and also seems to make me colder. It feels like it’s either affecting androgens or thyroid.
The only thing I’ve found that can consistently give me quite quick relief is strained celery juice - the more the better. I’ve tried for 6 months to figure out exactly why it helps without success (current clues I’m investigating points to apigenin and estrogen receptors among other things).
Been fighting this thing for 3 years now after overdosing on zinc in an attempt to lower estrogen.
Stay tough!
2 Likes
I seen it mentioned here by Ozeph, then on the androgen deprivation paper and finally that YouTube video and thought I’d give it a go. I used it because it’s a HDAC inhibitor and thought maybe there was histone acetylation that was blocking the receptors and that was why 3 individuals here had success with it but I now realise those 3 cases were mild. I didn’t know SB raises has an affect on hormones I believe it’s caused further receptor desensitisation, I think Douglas Mitch had the same thing although his was from an AI. Out of all the time that I have had PFS I have never felt more sick this is something different and I’m 100% debilitated now; I awoke last night with terrible heart pains. The roof of my gums feel all irritated and have significantly recessed, when I eat the jaw bones are clicking and hurting I had this before in hospital but not to this severity, entire back muscle disappeared leaving no support for spinal column, face completely dried out like a raisin with no subcutaneous fat whatsoever it’s paper thin now forming lines and indentations in my face overnight. Now I can happily say that I might be the worst case of PFS on this sites existence with severe hyperacusis coupled with severe PFS it’s just a cocktail of pure unimaginable suffering all from one pill and experimenting with supplements recommended here. I don’t know what to say anymore my days are numbered this is extreme torture.
4 Likes
Mate it just sounds awful, beyond!!!. Im lost for words. Hang in there is all I can say,/offer up. While your alive there is still hope.
It’s just shocking the state this drug can leave a person in. I can only echo what LazarusRy has said there, please hold on and hope you can get to a more bearable baseline. When patients have tried new substances, accounts of temporary (sometimes dramatic) worsening followed by a return to baseline are not uncommon on here. You’re an incredible person with the heart of a warrior. Please keep on fighting.
4 Likes
I agree with you. When I try to rub my teeth up and down, It seems like there is no link
My entire hip bones have shrunk, jaw bone decreased, knees feel like someone has took a sledgehammer to them, my back feels like all the disks have popped out in so much agony and now I need primary care. I’m now sure I have body wide osteoporosis and arthritis. This is absolute hell I’m completely disabled in so much pain
4 Likes
Sorry to hear about your condition, @Papasmurf. This should be a warning to all people who claim “things cannot become worse than they already are”.
I did not follow your story over all this time. What are your doctors saying? We know doctors are useless when it comes to PFS, but surely your condition should raise some eyebrows? Do you have any clear evidence of your osteoporosis and arthritis (e.g. X-rays, MRI, or whatever). It would be good to document your case.
I hope you will experience improvements soon! Stay strong!
The doctors refused to do any examinations and asked me had I been in contact with the mental healthcare team. Also have extreme anxiety had a friend come over to check up on me and had one of those Iwatches and my heart was completely irregular spiking all over the place compared to his. This is absolute hell it feels as if I’ve been in a car accident
1 Like
it hurts me to read and hear this brother. ive seen your pfs video…
i can fully understand you wanting to commit suicide, but you gotta stay strong. Dont know if you believe in God or a Creator but pray and ask for help!!
ill do prayer for you
1 Like
Thats amazing. I planned to write today to Papasmurf and one other person something very similar and now I see this message. I can only confirm Casuals words.
I actually wrote (although a bit lenghty) post that can be found under the name “Reconnection” on this (in my own words and thoughts).
I wish You good luck Papasmurf, please take all this at least into Your consideration. I will also say a prayer for You
1 Like
Update can’t walk at all this is a total nightmare, I have most definitely lost significant bone mass from hips and have been totally bedbound. Also to note that my MPB itch came back after a year and a half with PFS and hair loss has massively increased despite having no hair loss since having PFS and Testosterone being last measured at 18nml so I’m unsure of the reasoning behind this. I don’t know what’s happening to me but I suspect receptors have upregulated again in certain tissues and other site specific tissues that are still epigenetically downregulated have gotten worse due to increase in androgen DNA transcription or it could have just raised my Testosterone to higher levels and this has caused further downregulation.
1 Like