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Author Topic: Pain from experience  (Read 190 times)

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madscientist

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Pain from experience
« on: January 09, 2022, 09:33:26 PM »

Hey gents,

A way of distinguishing between inflammatory and neuropathic pain is requesting to go on a short course of prednisolone - this is irrelevant from a acute/ stable phase of disease designation (which is an antiquated AF definition and quite frankly not categorized well enough/ at all). Inflammatory pain subsides with steroids, neuropathic doesn't.

Quite often, the pain in the stable/ latter phases of the disease can be inflammatory (due to some persistent sub-acute inflammation). Chronic neuropathic pain (in my experience), is typically associated with distal/medial plaques (closer to the glans and urethra).

Hope this helps

Madsci
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Blatant

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Re: Pain from experience
« Reply #1 on: January 11, 2022, 11:21:17 PM »

Thanks for this interesting perspective/hypothesis. My onset started 16 months ago and painful erections and sex have persisted consistently all this time. I also have an autoimmune disease and when it has flared (before I had Peyronies Disease) I've had to take a short but intense course of Prednisone corticosteroids which is super effective at getting even severe inflammation under control. I think I'll ask my urologist about trying a short course of Prednisone now to see whether that will reduce the local inflammation in the shaft. Have you had any success with alleviating pain during erections or sex? Or are you saying that you haven't been able to treat your neuropathic pain with steroids?
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madscientist

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Re: Pain from experience
« Reply #2 on: January 12, 2022, 07:28:24 AM »

Hey Blatant,

- At the outset of the disease (Aug 2017), up until late 2020, I managed to control the pain with steroids. I tried short  of prednisolone (1-4/5 day high dose then stopped, in the realm of 1mg/kg or so). Very effective. But relapse-able.
- Long term courses of steroids, like on a tapering schedule - which is typically what you’d use for an autoimmune flare up like UC for eg, works too but the symptoms pretty much reverted back within a week of stopping vs the autoimmune disease remitting for longer (months at times - even without maintenance therapy like DMARDs or biologics).  Peyronies seems to relapse quicker than a think like IBD in my experience (sadly). Side effects of long courses are concerning (incl osteoporosis and insulin intolerances) so I’d be wary of this.
- I also tried Dexamethasone and Prednisone mini-pulsing, sorta like taking for a day or 2 a week. This seemed to work well for about a few months during the pandemic. But like I said, I stopped out of osteoporosis concerns.

Atm, prednisone no longer relieves my pain.
I wouldn’t go ahead and go as far to say it’s neuropathic pain immediately. I noticed counter bending, and then allowing the penis to relax increases it, this could be very well due myofibroblast contraction - hard to say.

Neuropathic pain is classically cause by nerve damage, which is based on the Sunderland classification system and can be in many cases, depending on severity, irreversible.
Traumatic vs inflammatory nerve damage is different - actively severing a nerve vs inflammation demyelinating a nerve (think of this as the difference between cutting a wire with scissors, and of a mouse chewing the wire covering).

Peyronies neuropathic type pain is most def the latter, and therefore the pain can (and should subside) once the sub-acute inflammation does. The thing is, this later sub-acute inflammatory stage is probably not cause by white blood cells (which is what causes the early inflammation and what corticosteroids shut down very well), but rather the fibroblasts themselves (which can act as inflammatory cells and do not respond to corticosteroids in the same way).

Please let me know if this helps.
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