Arthritis of the dick?

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Glassglue

I'm not a doctor but I've been forced to play one in real life far too often lately. And if I was I would say that if a penis was to develop rheumatoid arthritis it would look a lot like peyronies. I suppose this would fall into the category of autoimmune disorders.

Does anyone know of instances of using rheumatoid arthritis drugs to try to treat the acute phase of this damned curse?  I am seeing a rheumatologist next month to try to tease out any related connective tissue disorder since I also have developed Raynaud's and a few other possibly related symptoms, and I'm sure I will be discussing this with her.  

kuaka

It is more of a fibrosis disorder.  While it may be partially in response to inflamation, and may be arrested by reducing inflamation...

Let us know what your Dr. has to say.

lonelyboy

I'm convinced it is related to my RA and other issues as it all happened at the same time +/- year, I mentioned it to my rhuematologist and she told me it was nothing to do with rhuematology and to go back to GP (she got a bit grumpy)
I did manage to get on Hydroxychloroquine (seeing a different dr in the same clinic) which was mentioned somewhere as being helpful but I cant say I've noticed.
I'd be interested in what your dr has to say too.
Good luck

artguy1

I started seeing a rheumatologists and taking prescription anti-inflammatory meds about a year before my Peyronies onset.   I have no idea if there is any connection -- good or bad.   --artguy1
artguy1

skunkworks

RA is an auto immune condition. There is some evidence that Peyronie's is also auto-immune Pathophysiology of Peyronie's disease

This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Glassglue

Yes autoimmune disorder sounds right to me.  My entire urinary tract feels inflamed and there is no apparent cause. I read your thread from last year Skunkworks saying much the same as this one (I should do searches more often before posting, like most people). Did you ever get anywhere with the sulfasalazine or any other drug?

My appt isn't until July 1 it turns out but no matter as I doubt much will come of it. I am trying to suppress my loathing and disdain of doctors right now as I have actually spent the last two years prior submerged in anger and depression after a surgeon messed up a torn tendon repair in my arm (yes I know connective tissue problem alert) and lied his ass off about it delaying action such that it can never be fixed right.  And now I'm reliant on this group of fools yet again. I digress. I have to learn to work with these people.  

kuaka

Unfortunately, the medical "profession" is largely only still "practicing".  They have a real tendency to be protective of their "status" more than of the patient's health.  My daughter is now dealing with impending liver failure due to "practicing" surgeons and excessive anti-biotic use...resulting in...no less...an autoimune disorder known as autoimune hepatitis.  She is now halfway through a stem cell treatment which is intended to help her "heal" her own liver.  

Scarring is a response to (biologically) perceived injury.  Whether the injury is real or not is not really at question.  How to manage the response when it is excessive/errant...as in Peyronies Disease scarring...is a big question.  

In the larger question, how to prevent the response in the first place needs to be answered...but that is a general medical question, not expressly or specifically related to Peyronies Disease.  

NSAID use may play a role, as I have been on Celebrex in the past, and more recently Diclofenac, myself.  While "Arthritis" might be a "too specific" term to apply here, inflamation and the immune system response is the larger, more general category under which "Arthritis" falls...so there may indeed be a relationship.  

Most professions have a "language", and if you don't use their words the way they use them, they tend to assume you don't know anything.  

Good luck.

Glassglue

Kuaka that sounds horrible and I wish you all possible luck. My stress response to what happened to me has apparently turned my whole body inside out and very probably lead me to my current problems. But I don't have the luxury of ruminating on that at this point. I just need to get fixed somehow.

We are on the same page regarding my reference to arthritis, which is essentially a misguided response to inflammation either due to real injury in the case of osteo or autoimmune response in rheumatoid. I have severe osteo (supposedly) of the shoulder and have been on anti inflammatory meds in one form or another for most of my life due to a ruptured disc and other issues and continue to take meloxicam currently. I never really thought of those meds a potentially part of this problem.

So to me peyronies would be a just a different form of response to inflammation in a place different from a joint. I'm not really adding anything to your posting here as you said it well. But the real issue would seem to me to be preventing the inflammation in the first place.

As for doctors, and possibly this applies more to surgeons, I realized that your well being is firmly in the third tier below making money and covering their asses so they don't lose that money. At least in the United States.  

kuaka

Terminology specialization is not peculiar to the medical field.

I was working at a small company back some 34 years ago.  The toilet in the bathroom was not working...as in "not going down".  The building owner sent a maintenance man.  I told him "it doesn't flush"...so what does he do?  Promptly pulls the lever...causing an overflow.  His answer "it flushes fine.  Flushing is the dumping of the water out of the storage tank when you lift the flapper valve".  

We made him clean up the mess though.

What we have here manifesting as Peyronies Disease is the body's repsonse to a perceived injury in the tunica.  Getting the tissue to loosten back up to its designed "slackness" (think of the cheese cloth tube I wrote of elsewhere) so that engorgement of the erectile tissue can expand to the natural size and shape should be the goal of all Peyronies Disease treatments.  I consider the Nesbit Plication neanderthalic as an approach myself.

Oh, and the medical profession almost killed my wife three years ago with a symptomatic treatment of her issues when meningitis had her in the hospital for the second time in 20 years.  They gave her anti-diarheal, and pain medicine since she was having intestinal cramps and diahrea...nevermind the fact that she had a raging infection in her intestine that her body was trying to eliminate.  Yeah, my confidence and opinion of the medical profession in this country is appropriate...perhaps a little too forgiving...considering my experiences.

ledder

Hi,

regarding the rheumatoid idea, i am 34 and have been last month feeling tired and with low pain in my bones, like in a flu, but without fever and almost without headache. Did an analyisis and my rheumatoid factor is higher than normal. Doctor said rheumathoid disorders are related to collagen, so I thought on peyronie's.

Here are my guesses:
1 - My peyronie's and my rheumatoids factor have nothing to do with each other.
2 - Imflamation from Peyronie's has provoked a general imflamatory response in the body, rising the rheumatoid factor.
3 - Maybe some imflamatory disorder has triggered my Peyronie's.

Honestly I have no idea which one should be, but my guess is number 2.

Ledder

kuaka

I would start with a look at my diet, if I were you.  Many inflammatory responses are to "food"...quoted, because much of what we consume today bears little resemblance to actual food.  Start with wheat (not necessarily the wheat itself, but much of our crop these days has a mold problem.  Pillsbury products tend to use less moldy wheat...my neighbor and friend the farmer is well versed in the market).  Look also at corn, as almost all of it is GMO these days, and the BT mod adds a toxin which to which you may be reacting.  Diet is much more important than we acknowledge, and it is way more than calories and the known nutrients.

kuaka

Stabler

Here is a list of Anti Inflammatory foods if you are interested

Hugs Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

LWillisjr


Also the problem with wheat is a protein called gluten. My wife is extremely allergic to this.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

ledder

Thx for your insights and the list, they reforce my commitment to a healthier diet. I do eat quite healthy, but I can and have to do it more. I myself have to check both the anti-immflamatory and anti-herpes food, so my list shrinks a bit.

The gluten is an issue that worries me a bit. I did some tests and i am not intolerant to it, but i have come across people in the internet who clain that the intolerance symptoms may be wider that thought and go undetected in regular tests. I do not want to worry too much about it cause i get hipocondriac, but it is something that is always in the back of my mind. Also i feel it is quite difficult to completely cast out glutten from food and as far as i know it has to be completely removed from food, as only a little can trigger reactions.

Ledder

kuaka

Easy way to tell if you are sensitive to gluten.  Eliminate it for a couple of weeks.  No bread or wheat products.  It is admittedly boring, but doable.  If you experience decreased or eliminated inflammation, you have your answer.

kuaka

Helm

I have been reading this thread with interest, I too have Peyronies Disease and RA a
Throw in a recurring dose of prostatis and its not pleasant, The RA has been active longer than the Peyronies Disease.
to cut a really long story short, my RA consultant prescribed sulfasalazine which is an immune lowering drug.
I have been going down the enzyme route along with a dmso and iodine gel. Things improved not major but still an improvement esp in girth and curve , I had stop taking the sulfasalazine for a while and I felt a little change for the worse, back on them again and I feel as if its improving again not as much of as physical improvement in the curve but feels more natural and pliable  

I think there is a connection between RA auto immune problems and Peyronies Disease,  not trying to convince anyone  just sharing my thoughts I have had Peyronies Disease for over a year so I do accept it might just be it running its course

Glassglue

Went to yet another uro last week. My issue now that the plaque seems stable is ongoing pain, both flaccid and erect. He was unhelpful. However he did state flat out that he believed peyronies to be an autoimmune disorder. He based it as I did on the presentation and progression of the disease. Infuriating as ever that no one seems to be seriously looking into treatments.

As an aside he was actually less than helpful. He said well there's nothing I can do about the pain [that's ruining your life] but since you had hematuria (blood in my urine) for twelve hours a year ago just before the onset of this disease I want you to have a CT scan of your pelvic area and a cystoscopy to rule out a tiny chance of cancer. Lovely. I said no to the CT and still thinking about the cystoscopy (where they thread a camera up your dick into the bladder) as maybe it would show scar tissue or inflammation that could explain this pain.  

Lucketts


If you undergo one, they will give you a choice of in office (awake) or surgical center (out).  Do yourself a favor and choose the latter.  

Glassglue

Oh crap. I wasn't given an option. Just the in office. He said the only unpleasant part was when it went through the sphincter to the bladder. Is it bad? :-(

NeoV

I've had two cystoscopies, both awake and I think they are always awake. It doesn't hurt much but don't do it unless there's a good reason. Any urethral manipulation is risky in my opinion.

Glassglue

Ok thanks. I have no idea if the risk is justified and no real way to know at this point. I have to do something.  

Lucketts



My uro said that it would be painful awake.  When asleep, you obviously don't feel a thing, bef, during or afterwards.

I agree though w/ NeoV.  Docs are real quick to RX CT scans and things like cystoscopies.  One should have as few scans as possible because of the large amount of radiation involved, and a cystoscopy could damage something down there.  I read somewhere that there was concern that a bad cystoscopy could encourage plaque formation and peyronies.  If the concern is cancer, aren't there blood tests that can determine if there is anything cancerous in your body?

Glassglue

Well there is a psa test for prostate cancer which is not very reliable. I'm awaiting results of that. I agree about knee jerk testing and the undesirability of a CT scan without more reason than "just to be sure". So I opted out of that and said yes (so far) to the cystoscopy. There is something weird going on causing my pain that seems to go beyond the normal presentation of Peyronies it seems, although it's onset was more or less concurrent with the penile fibrosis. All of which was preceded a month before by 12 hrs of hematuria. There are other factors involved including problems with a bad L5-S1 in my back and sciatic nerve pain, although neurologists claim it very unlikely they are related (I am still unconvinced).  So I do feel like I need more data. I will do the cystoscopy as the lesser risk procedure and think about the CT scan if I don't learn anything or nothing resolves.  

Lucketts



I would think that if you have a normal PSA reading and the uro doesn't tell you after a digital exam that you have an irregular or lumpy prostate, that it is unlikely that you have cancer.  And I do agree w/ you that a lower back pain/sciatica problem can cause pain almost anywhere south of the belt.  Good luck w/ the cystoscopy.

Glassglue

The digital exam was normal. I think he is concerned w bladder cancer. As he said blood doesn't belong in the urine. It had to come from somewhere. I agree, but don't know how concerned I should be. I mostly want to know if there is something that can be seen that gives me a clue about the source of the dick pain.  

NeoV

I also have hematuria, near constant pain in urethra and pelvic area, full and sore prostate, and generally sore penis, burning hands now constantly numb, and painful elbows. All of this makes no sense to me and no doctor can figure out the cause. Now every morning I wake up and my feet are numb as well.

Since my Peyronie's is all ventral, I sometimes wonder if it's all been caused by urethral inflammation which is also present in my joints. Oddly enough for a long time I suspected ejaculation itself was causing the inflammation, since I would take a week or more off ejaculating, and find a lot of relief from bending and soreness. Then since I waited so long, I would leak semen when urinating which would then trigger an inflammatory episode. I'm baffled, but I think anything is possible at this point.

It sounds terrible, but I'm actually doing pretty well these days and rarely have flare ups of any kind. I'm mostly just working on improving the deformity a bit more and having better erections and overall health.

EDIT - almost all of this cured after going keto. This post was PRIOR to treating underlying insulin resistance.

QuackAttack

NeoV,

Have you been diagnosed with Raynaud's? I have seen some forums discussing Raynaud's and Dupuytren's. Dupuytren's and Peyronies are supposed to be linked. Maybe Raynaud's is too. I have some similar symptoms too. I have had elbow pain in my right elbow for 3-4 years and have lost ~20 degrees of extension and my hands are constantly cold. I have to use a space heater at work because my hands become ice cubes.  

kuaka

For those with more generalized issues, I'm going to suggest something.  When I was in Denver a while back on work, I met a man who developed a dry method of making Buckminster-Fullerene, a.k.a. "Bucky Balls".   Bucky balls are a carbon molecule consisting of sixty atoms arranged in a globe.  Envision a soccer ball, with one atom at each "corner" of the pieces it is made of.  This molecule acts like activated charcoal at the molecular level.  They will pass through your system taking free radical elements with them at a phenomenal level.  Detox like you cannot imagine.

I credit this substance with my daughter's life, as her liver toxins are finally under control and it looks like she will recover.  She will be the FIRST survivor of a staph infection in the liver...ever.  She has made friends in the program, and so far lost four of them already.  

I don't propose it as a cure all or even a treatment for Peyronie's as it is basically unrelated...but if you have other issues which might be explained by toxic buildup or inability to process toxins (liver/kidney issues, or exposure to something nasty), it may be of use.

If you want to know more, I know where to get it.  It is not exactly cheap, but not out of reach either.  I have no financial interest except that it is saving me thousands in liver treatments for my daughter, and saving her life.

Michiganguy19

That's exactly what Peyronies is... arthritis of the penis. Just google that instead of peyronies and it will pop up. Your penis is made up of connective tissue just like your joints. When you get arthritis it damages all your connective tissue. I got this Peyronies started the exact same day I got Reactice Arthritis from a chlamydia infection. They're 100% connected. Stop your arthritis, stop the peyronies.
Peyronies Disease December 2015.
Caused by Reactive Arthritis, November 2015.
Length before erect: 7.2in
Girth before erect: 6.5in? Just a guess. Was 5.9 after loosing girth/having hourglass and first measuring.
Length erect. 6.2in
Girth erect: 4.1

NeoV

My "arthritis" is completely gone along with Peyronie's problems due to my diet. Diehardpatriot has also removed his arthritis by avoiding glucose, as his family has severe insulin resistance (as does mine, despite no tests really showing how severe it is).

Check out the book Nerve Crush. Learn all about inflammation, and CUT OUT inflammatory foods (carbs, veggie oils).

QuackAttack

Neo,

Are you actually referring to the book Sugar Crush. I can't find Nerve Crush. Do you have an ISBN # for the book? This topic is making some sense to me because I have had elbow surgeries on both my left and right elbows over the past 15 months to remove bone spurs that developed due to a deterioration of the cartilage, basically almost nothing in my right elbow and I have been supplementing for years trying to rebuild the cartilage in my elbows. Maybe my supplementation is ineffective due to any level of sugar, oil or any inflammatory food.

diehardpatriot

Neo is right. I would have pain in both of my wrists if I lifted weights or played basketball for an extended period of time. This was only after I sprained each wrist but years later it was like they never healed. Even with long periods of rest, as soon as I went back to normal activity there was pain. Once I cut the carbs I am back in the gym and using no form of wrist support or wrap with zero pain.
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

Holistic

What is interesting is that the Brian uses glucose. I wonder if limited glucose or natural forms of it can still be utilized?
32 yo. Unknown cause. 1st plaque proximal left base near pelvis 9/19. Expanded and shrunk after 8 mo by 50% (still working on it). Minor bend but malleable. 2nd small plaque 5/20 superficial distal right just under tip. Currently growing. No bend.

Holistic

Quote from: QuackAttack on February 18, 2019, 10:10:11 AM
Neo,

Are you actually referring to the book Sugar Crush. I can't find Nerve Crush.

I believe he means sugar crush:how to reduce inflammation, reverse nerve damage and reclaim good health. by Richard Jacoby
32 yo. Unknown cause. 1st plaque proximal left base near pelvis 9/19. Expanded and shrunk after 8 mo by 50% (still working on it). Minor bend but malleable. 2nd small plaque 5/20 superficial distal right just under tip. Currently growing. No bend.

headturner

ase they came together.
I had a strange feeling in my penis. 2 weeks later I developed a reactive arthritis. The RA stopped by taking cortisone after 5 days. At least the pain in the joints and the rush all over my body was gone. Few weeks later my dick lost size and bent.
Peyronies since summer 2021
maybe due to reactive arthritis
taking pills and use traction devices
60 degrees left
big scars
no ED so far
considering implant to stop loosing more size
50 years old

bentoboy

Hi there,

My story might be somewhat relevant to this thread. I got peyronies in 2020 and started having some other health issues at the same time (mild joint pain, rhenitis, penile rash, lower than normal libido, eye redness). Having read quite a lot about RA and other autoimmmune conditions, I did a number of blood tests to exclude any possibility. Here is what I got:

HLA-B5 - negative

Proteins

IgA - 2.06 g/L (0.70 - 4,0)
IgM - 0.55 g/L (0.40 - 2.30)
IgG - 11.80 g/L (7.0 - 16.0)
C3 - 0.78 g/L (0.79 - 1.52)
C4 - 0.19 g/L (0.16 - 0.38)

anti-CCP - 1.50 (0  - 4)
MCV - 1.06 (1 - 20)
Rheumatoid factor - 6.42 (0 - 14)
C reactive protein CRP - 0.90 (0 - 5)

Also, I got low ceruloplasmine (it was about 12 and the norm is about 15-20, as far as I can recal), low vitamine D (20, norm 30)

So, as it seems, it doesn't look like RA. However, my doctor told me that it still could be something like a Behcet disease or something similar. I'm going to wait for several months and then repeat this test (will also include HLA B27).

I had also been diagnosed with metabolic acidosis which undermines normal functioning of acids in the body. However, this diagnosis was refuted by another doctor saying that my blood tests don't really indicate that I have this condition.

I still suspect that I might have some form of an autoimmune disease because I have quite a few symptoms that I cannot really get rid of (tried to fix joint popping/later mild pain, eye redness (very mild though and occasional) - to no avail, I've seen perhaps 20 different doctors for this)

27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.