@IrishLegend yeh mate unfortunately Dr Julian (I think that’s his name) is anti pfs. I have thought about it
Oh really that is a shame.
The show I was thinking of there was an Irish female doctor and two other doctors, one by the name of Christian Spencer
I remember one incident where this young guy was in such despair with his ordeal and was sent to top specialists at a renowned clinic to help investigate what was happening.
Would be great if an opportunity like that came up.
Think some from the UK recently said that a show on BBC hosted by Victoria Debryshire was going to deal with PFS but Covid got in the way.
That’s him Dr Christian were on the same page/show. I’d said to someone a few years ago I’d head for their mobile bus but got told he was a pfs sceptic.
I think Dr Christian may be willfully blind as he may be on the drug himself, but comments he’s made in the past are frankly unwarranted and unprofessional. I would sincerely hope that as a doctor he could be open to being educated and maybe came from an initial place of ignorance without investigating it at all. I’m not a fan at all of his but he probably has influence if he opened his eyes.
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& to the MHRA and their ilk. The translator to their typical response actually reads: It doesn’t matter if hundreds of men are harmed by the drug or take their lives. If the number reported don’t reach a certain level we won’t do anything to warn potential customers of the potential for harm. We only notify people if the risk is over a certain amount, even if many men are harmed or die. (Shrugs)
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That’s right, I was talking to the Victoria Derbyshire team, not long before they were axed.
Was just about to say the same, I wouldn’t expect him to be an ally.
Skin hanging over the eye bone on the right side of the face.
The left side of the face looks better. Collagen has better density and is more evenly distributed. More like the face I used to have.
My face a year before dutasteride:
Unfortunately a few of us have this. I’ve lost the collagen underneath too it looks like an invisible thumb print, too thin an area for fillers. I hope it settles for you for some it does
That is, this area is not possible to fill with fillers?
The workaround is to have it injected on the side and it plumps it there pulling the brow across. Irs the best they can do the alternative is a lift but you’re very early on and may yet bounce back. Plus some of us don’t heal very well
That’s the challenge right. Since my symptoms began in November I’ve only seen three people who I discussed my condition with and all denied physical changes in me other than ‘I look tired’. I’ve also seen doctors who document what I tell them but not their own observations beyond depression and anxiety. No ‘patient presents with eyes and skin like a decaying corpse and flattened extremities’. It’s all ‘patient reports tissue loss, refuses antidepressants.’
So others don’t perceive anything wrong with us and blood tests back it up. Then we want to tell them that what they don’t see and can’t be detected is caused by a drug we’re no longer on.
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I’ve gathered the courage to finally post my own before/after photos about the changes to my skin.
There’s no closeups of my face though but the same issues are present there as well: wrinkly, loose skin and dark circles that do not disappear no matter how much I sleep. My skin just hangs loosely on me. I don’t know many other PSSD sufferers that have these issues.
On top of that, I’ve also lost sensation in my skin and can only feel temperature, pressure and pain, so a hug for example does not feel like anything at all.
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I don’t know. It has been 1 year and 7 months and I do not see even the slightest positive changes in my face. I have not seen a single person on this forum whose face would be restored in 2-5 years. I saw only two people in whom it was restored in a year. But most likely they had only loss of collagen, without serious epigenetic damage.
I think some of the tissue loss we experience is not actual tissue loss, but rather a sign of decreased microvasculature.
Just my guess, as I’ve noticed that going to the sauna etc that open up the blood vessels brings my hands and feet back to normal.
Rapid loss of microvasculature in human prostate from finsteride.
Decreased in VEGF (blood vessel growth factor) from finsteride in human prostate.
Chart over blood VEGF in females using finasteride.
This could, in the long run, lead to many of the issues we see like lipoatrophy. Could also explain why our symptoms are similar to having diabetes, as many symptoms of diabetes is due to damaged microvasculature from the chronically elevated blood sugar.
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Six days of Escitalopram!
Dear @Gavia
Thank you for having the unbelievable courage for a young woman to show your changes after only half a year with pssd.
For all the pharma cartel members and their psycho pill devotion doctors, seeing the dark cycles under your eyes and this sadness in your face, the alterations of skin and body composition, they cannot deny that this is more than a fucking depression.
A depression or a mental disorder is nothing nothing nothing against the pain and suffering pssd or PFS symptoms.
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Our intradermal fibroblasts have their own ARs, and are fueled to some extent by androgens. Through gene silencing, ARs become overexpressed (correct me if I’m wrong). Thus, the amount of androgens available to fibroblasts is reduced. Fibroblasts begin to generate less collagen. And some of the properties of the skin are lost. So if you return to the former hormonal balance, your face will not recover, since the process is in a constantly disturbed state. And until something happens to move it back - your face will not begin to regenerate back.
There was a guy who had dramatic changes he looked like a waxwork dummy with a long pointy narrow chin. At the 2 year point he spontaneously recovered He returned to tell us then got on with his life
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Yes.
This is a theory, but haven’t been proven yet (although PFSN are working on it). Although their theory is that due to low androgen environment, AR expression increases and that leads to a dysfunction of the AR signaling which would lead to the “gene silencing” or underexpression of certain genes.
So in the official theory, the AR overexpression is the driver of the disease.
It will be interesting to see if this is true, because the amount of genes altered in the Baylor study far exceeds the amount of genes the AR “should” control.
Pretty much, but we don’t really know if we recover to our hormonal baseline. There would need to be before / after tissue specific tests to determine this.
Although there are some rat studies that show fin and SSRI can persistently alter the steroidogenic pathways in certain tissues (brain etc). This would mean that we never return to baseline, hormonally speaking.
In fact, when using something like Accutane this is the whole point of the treatment, as if you recover to baseline you’d get acne again.
This is probably also why we don’t “heal”, because we are not damaged. Just altered.
Since the alterations are always entropic I think it’s fair to call it damage.