LazarusRy's PFS journey

The last few weeks have been particularly brutal. This disease has a canny way of pulling u further down than you think is possible. Skin lesions like Aids, further deterioration, emotionally lower than ever, eratic, irritable, nightmares, screaming tinnitus, allergic reactions to everything, pain everywher, weaker than piss, looking like someone 20 years my senior with bulimia, mal absorbtion, resulting in global cellular death. Unbearable trying to hide this all the time for fear of further invalidation from everyone (exhausting and upsetting).

I’ve held back doing a Will as not having one stopped me from allowing my mind to accept the inevitable. At least I get to have the final say in this. With pfs I became a nothing, an outcast to everyone, even those who I thought loved me. They weren’t interested in understanding pfs at all. I hope I can forgive them on my journey home.

So after all this time it feels like I have no choice but to yield to this suffering. As said in the past I’ll mark out an amount for the cause.

DONT ever see this as your destiny. Every one on here has a lot more fin to take and many more years to catch me up So hang on in there you’ll all get your lives back.

Please don’t post please dont reach out, some on here have been my shoulder at times. I’ll never forget you. I’ll take your leave gentlemen (thats what you all are) . I now have some thinking and planning to do.

Please inform the MHRA when I’m gone.

Finasreride took my life nothing else. Inform the papers too and strive for a frank write up.none of this depressed bullshit.

Its been one hell of a ride, unfortunately not one that i was warned about. Not once!!! There were many missed opportunities.

I hope all of those involved pay a heavy price one day for what theyve done to so many innocent lives…cruely and needlessly destroyed, for what… corporate greed

If my son comes looking for me on here tell him how hard I fought. I think he knows.

17 Likes

I just don’t know what to say。。

2 Likes

Only thing that gets me through those moments is tramadol… the doom subsides long enough until next time…which is really what we are doing is buying time…I’ve taken two a day for years or would done be dead…

2 Likes

Well after the worst fears I just ain’t got the balls, I’m a coward, the worst possible existence (beyond comprehension) remains more favourable than snuffing out my own life.

I appreciate the kindness from everyone.

I am going to low profile it for a while (ive said that before too) to try to reach some sort of stable line

Sorry for the worry guys, u are family to me the only ones who relate/understand any of this.

You’ll have to put up with me for a while longer. God willing.

:heart:

23 Likes

:heart:

1 Like

:heart::heart::heart:

1 Like

Hang in there my friend !

3 Likes

I was tempted to reach out earlier but bit my tongue when I read this:

So I complied with the request. I was a little disappointed that others disregarded the request for whatever reason. I am sure they had good intentions though. Now that the request appears to have been waived, I am showing my support.

3 Likes

It’s almost always better to let each other know that we care when the chips are down, imo.

Ryan’s an absolute legend in my opinion, there’s not a lot I can do to help right now, I know it and he does too, but I absolutely had to send a message anyway.

Would recommend everyone tries to support one another here. We all need it.

12 Likes

Candida and pathogens taking hold, white thick phlem, crust on face, jello coming out when going to toilet, fungal nails infections huge haemorrhoids that came on a few months ago, looks like a baboons arse, sand coloured ribboned stools, more weight loss, jaw and limbs thinning further, allergies and food intolerances are very bad. Cracks appearing on ankles now too. Piss frequent and like tea. Was at hospital wednesday for RA check up urine showed high levels of ketones and trace protein. Nurse asked if I had diabetes. (Bloods don’t show anything diabetic related) but its very concering as is all of this. A new Dr saw me (read my notes) and said he knew about pfs and said its a real problem. He was aghast at the changes when I showed him photos from just a few years ago. CRP has recently climbed as been off rheum drugs for 13 weeks in the hope candida would recede. Inflammation/crp is colon related and not RA. They talked antibiotics and various antifungal drugs which I initially declined. They then came up with nystatin which I’ve reluctantly started. My biome is fucked no lactobacillus, biffidus and v low butyrate which leaves me at the mercy of these invaders. Tinnitus screaming from the 1st day of use, feel some increase in androgens (oily nose) but also extremely giddy, suicidal and self harming urges along with constant nightmares arythmia Iis becoming more frequent and chronic inflammation is very apparent/painful, trigger finger has returned and swollen knuckles, elbows come on as soon as i eat , guts are a complete mess., limited absorbtion/nutrition, hot gas, groaning and abdominal, back pain, red skin stains on ankles and feet "liver’ New lows just getting this recorded.

2 Likes

@LazarusRy
My friend, you have endured such trials. Thanks for being here. Jim

3 Likes

This is what it came too in the end.

My mind was ravaged aswell i no longer recognised myself Nothing on Earth compares to the potential ruthlessness and destruction that this causes. Nothing in my life was left untouched

6 Likes

Fucking brutal. My limbs are headed in that direction, I can’t even look anymore.

2 Likes

This disease is just incomprehensible

Lazarus have you ever tried DHT treatment or was it ever suggested to you by your Endo?

Have you ever had your DHT levels tested?

I know you describe collagen loss on your face as invisible thumb prints and how certain foods can suddenly make a new dent appear

I experience this and wonder should some day I try DHT eventually as I know anti DHT food makes me worse

Stay strong mate

1 Like

@LazarusRy I have no words you haven’t heard before, but know I pray for you.

Also, did you have gastroparesis? This article suggests using erythromycin, in case it is new to you. Jim

Please respond whenever you can Lazarus. The brevity and incomplete nature of your post worries me.

2 Likes

I’m being sent for scans to rule out cancer, last year when I’d put weight and muscle on I should have looked to heal the gut … a huge opportunity missed… now it all seems to be out of my hands.

1 Like

The dramatic worsening has stepped up a level. Had to leave my wifes again this morning very hard, suicidal, irritable, i feel she cant deal with it, well she cant as i get worse, i lay there after springing awake @ 1am this morning massive urination, extreme anxiety weight loss, everything pain, destruction of my body, guts etc etc horrific, feels like everyone is pushing the phyciatric card at me. Realised the hair is coming back in on my scalp. Ive looked into tocilizumab the drug i recently restarted for RA to help with the pfs, to find reports it possubly helps with hair loss. The explanation for why ive only got worse , feeling of doom inside me (always) its just how much horror i can take before this kills me sitting in the car staring at my childhood home knowing only a miracle will save me. :pray:
Never feel this path awaits you the repeated years of exposure brought me to this point

3 Likes

Wdym they are pushing the phyciatric card on you? You clearly had physical symptoms, what do they want to do?

1 Like

It feels like no matter what I say or provide there’s a degree of scepticism and belief most of it is in my head. Recent xrays confirmed bone loss from the last ones taken less than two years ago.

3 Likes