LazarusRy's PFS journey

Auto immune updated my last post to reflect this. Aromatose are potentially v dangerous sorry should have been clear @Taw

1 Like

For what it is worth, I was given a drug commonly used for autoimmune conditions to treat an unrelated issue. I sometimes wonder if that had any influence on symptoms.

1 Like

Thanks mate it makes for good reading and I think it well could have. I’ve been on AI drugs for years and pfs would remain in a much lesser active state even though I didn’t know I had it just knew I was experiencing all of these unexplainable symptoms. When I started new drugs the Rheumatoid would improve along with all of these other things I’m not currently on any AI drugs and pfs has never been as bad.

2 Likes

It’s so hard to read what’s going on with you dear friend. Two decades you fought this shit. I saw the pictures from your neck and the dents and your current state.
Your house, job, stunning wife, lovely son, super body, social connections everything for a nice and comfortable life as anybody dream of.
And all this destroyed to a state you have to take your head with the hands to the pillow. Not by a natural disease, only because of a cosmetic drug and the producers lied in the clinical trails and in the gaslighting leaflet.
That makes me rather agressiv. Because this company and the criminals who developed the drug live their healthy life’s from the money they earned by the murder drug. Hope they suffer all in hell for eternity.

4 Likes

Been to the skin clinic today and the clinician told me that women generally lose 6 mils of facial volumel between the age of 35 and 55.

She stated that I’ve lost half of that amount since she last saw me 3 months ago. That’s on top of the damage that’s already been happening.
She also commented on more visible loss of muscle.

My situation is so worrying, acceleration and deterioration in so many domains. Unable to dress, brush teeth, lift a kettle , constant excruciating pain everywhere, connective tissue disintegrating no abatement.

All of my physical strength has gone where as even just a few months ago I could still feel rare moments of firmness in what was left of my muscles.

I haven’t been to the toilet for over 4 weeks and my GP wasn’t the slightest bit concerned

3 Likes

When was the last time those so-called “benign” tumors were evaluated? I’m trying to make some sense of this all.

It’s disturbing that your body would allow healthy tissue to deteriorate while allowing hostile tissue like tumors to lurk. What is this, friendly fire?

So, so saddening this is to read.

I think the insulin resistance kicks off cortisol then in turn causes widespread inflammation which causes the damage to healthy tissue.

My urine is also very dark after eating which I think is linked to bilirubin leakage which is in part causing the chronic constipation. These issues seem to be related to SRD5A1 and 2 disfunction.

The Dr is ambivalent to my worsening issues and clear visible deterioration.

The liver results were in the last few months, I’ve been eating omad to try to pull back some of the NAFLD

It feels like this candle has almost burned out.

1 Like

I thought cortisol blocked inflammation. I was given corticosteroids to treat something else. That is what I referred to in an earlier post in this thread.

Wow, so the doctor is failing to put together a care plan? That’s like hiring an exterminator for them to say they are ambivalent to rodents/insects in the cabinets, appliances, furniture, and etc despite the visible chaos. That’s like an electrician who is indifferent to sparking wires. Do your job that we hired you for or get a new job! (Examples were hypothetical, not based on actual events).

2 Likes

When cortisol is working that’s what it does but when it’s not it has the opposite effect which is what’s happening in many cases / symptoms it’s upside down because of over expression of the said genes. The doc simply sends eferrals but no one will entertain me citing no knowledge of pfs. It is unbelievable that this can be given as a reason

However @Taw cortisteriods also helped me years ago before things became so fucked up!

See below re what I mean

Cortisol is a potent anti-inflammatory hormone, and its dysfunction is likely to result in widespread inflammation following the reactivation of an acute proinflammatory stress response. Studies have shown associations among inflammatory cytokines, stress-related chronic pain, and salivary hypocortisolism.17 Jul 2014

But to high cortisol is pure stress.

Everything is in the flight or fight Modus and you cannot bring the energy on the street. It’s like a motor with 12.000 rpm but there is no bottom to let the power work. So the brain is on the run and the body is weak.

So we high cortisol PFS guys are running up and down with regret and time machine thoughts day in day out disconnected from the reallyty we need the energy to perform our life

1 Like

Well I still haven’t been to the toilet, saw the doc yesterday I’ve lost close to a stone since I saw him 4 weeks ago .
Skin is even looser
I’ve lost another 3 inches off my already wasted bicep muscles have all but stopped working.
At my request he performed a rectal examination and confirmed no build up waste but mentioned my prostate was enlarged.another one to thank Finasteride for.
He’s prescribed fibrogel and is going to check my PSA.
I enquired about other interventions which he side stepped.

I suspect my colon has stopped working and waste is backed up/ not moving to the rectum and I am suffering from malabsorption as a result. The wider hormonal deprivation will also be contributing to my physical demise , lipodystrophy etc as well as probably being the reason why the .colon has siezed.

He acknowledged the abnormal physical changes, eg thinning of limbs/bones , facial changes, loose skin, loss of collagen, connective tissue, masculinity but said he can’t to anything about those

I wish I’d asked for a scan to identify where the last 5 weeks worth of food is. My GP should have suggested this considering what was being presented to him.

I’m starting to look very ill this is unsustainable more people are commenting on my weight loss and look…

4 Likes

I’m in the same boat as you I’m getting much worse now and there isn’t a single thing I can do about it. Its like I’m fighting everyday just to stay alive I have no energy or strength of any kind anymore. I look back at the photos i have from when I was bodybuilding and I’m not even the same person I’ve completely changed physically.

4 Likes

Sorry @AaronF that you’re also going through this level of deterioration.

1 Like

Sorry to ask this mate but no bowel movements for a month is extreme. I’m surprised your doctor was so blasé, I can only assume that they somehow thought you were mistaken somehow. Did they discuss laxatives or anything else to get things moving?

I’m not convinced a rectal exam would give them the info they needed, if there is a blockage it would undoubtedly be further up, so finding nothing there would merely indicate further examination necessary, I would have thought.

2 Likes

Yeh @Greek we know we’re not listened too mostly . I’ve come away feeling very worried. I suspect it is the colon which is further up, close to a stone of weight loss in 4 weeks should have been enough to warrant further investigation. Given my answers laxatives were deemed unsuitable. I know some on here have reacted badly to them. I’m going to push him on Monday for a scan and will provide an update. Cheers mate

6 Likes

Yeah, they need to do something. They can’t just leave you like that.

2 Likes

Last chance hotel, pray for me:=

5 Likes

@Taw my mother said that and I didn’t believe her but found out she was on the money/bang on.

1 Like

I had very bad constipation when I crashed. Laxatives helped a lot. I managed to get things going again with macrogol sachets, high dose (like 4-5 a day for several days).

1 Like

Medical facilities use prune juice as a laxative because it works. It also has a pleasant taste.

1 Like