Could rheumatoid arthritis drugs possibly have something to offer

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skunkworks

A study about rheumatoid arthritis drug reversing fibrosis - http://www.gastrojournal.org/article/S0016-5085%2804%2901847-5/abstract

It works via a similar pathway to the anti-asthma drugs, which some have found to be beneficial with Peyronie's. It has shown benefit for a variety of auto-immune conditions as can be seen at the wikipedia page Sulfasalazine - Wikipedia, the free encyclopedia

One line from the wiki article that caught my eye "Cells called myofibroblasts, which contribute to scar tissue in a diseased liver, also appear to secrete proteins that prevent the breakdown of the scar tissue. Sulfasalazine appears to retard this secretion." Does anyone know if these myofibroblasts are involved in fibrosis throughout the body, or just the liver?

The wikipedia page for them says they are Myofibroblast - Wikipedia, the free encyclopedia . There is a particularly interesting bit of information about them and smooth muscle which as we all know the penis has in abundance.  
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]

NeoV

Interesting. I have very severe arthritis that started when Peyronie's did, and no cause can be found whatsoever. I'm sure I'd try that.

UrsusMinor

Also interesting in that Pentox, which is generally regarded here as helpful (if you can tolerate it), also reverses or inhibits liver fibrosis or scarring.

It would be nice to have an alternative to Pentox. After two weeks, I found I couldn't keep it down!

james1947

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

On further reading, this drug also seems to cause some of the same problems as Pentox--immune suppression and adverse effects on blood...

Still, the idea of arthritis remedies being useful is interesting.

About 18 months before my Peyronie's suddenly appeared, I suddenly had torn/degenerated ligaments and tendons in my rotator cuff. My girlfriend insists that the Peyronie's and the rotator-cuff problems are linked somehow...

UrsusMinor

Hi, James--

I spent two weeks adjusting to one per day; another two weeks at 2 per day. These levels made me feel queasy, but I could survive it.

When I got to three is when the nausea became intolerable. I realized at some point that there wasn't much point in swallowing something unless I could keep it down.

I may give it a go again someday in the future...but I felt so much better once I stopped...!

james1947

It was not easy for me also to adapt to Pentox.
I was proposing you to start with one per day in the morning (if or when you wish to start again) during meal until you will not feel any side effects.
Ant how, my self stopped Pentox after 18 months because it weakened my immune system to the point that got severe flue every month.
I wish we/the doctors will find a replacement for it.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

Just FYI, having looked into this further, it just seems more and more like it could be a viable treatment option, probably more effective than pentox.

I am getting all the info I have and sending it to researchers to try to put together a small scale trial.

Can anyone help me with who I should contact? I found someone at Cornell, but everyone who has ever managed to get funding to run peyronie's trials would be great. Any help at all on this greatly appreciated, even just post a name and I will hunt out contact info.
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]

james1947

Sorry skunkworks, we got completely out of topic.
I invested some time to understand your first post (sorry I didn't done it before, even now not enough time), I have to say that yes, it sounds as sulfasalazine may be a good replacement for Pentox but not without side effects.
One of is Agranulocytosis, that dangerously lowers the white blood cells count (for me will be a blessing, but Pentox didn't done it even it is one of the side effects).
An other is Hypospermia, an unusually low ejaculate volume
Sulfasalazine can cause severe depression in young males.
And many other side effects mentioned.
I think the subject should be learned and see some more documentation regarding the side effects.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

Yup temporary infertility is one of the side effects, but by research immediately reverses once you stop taking the sulfasalazine.

As for Agranulocytosis, yep that is a more worrying one, but is extremely rare and again seems to reverse once treatment is stopped.

Thanks for having a look at it all James, I think this really is very promising. Comparing the results of pentox and sulfasalazine on liver fibrosis, the latter looks to be much more effective.
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]

skunkworks

Quote from: UrsusMinor on August 02, 2014, 05:43:02 PM
On further reading, this drug also seems to cause some of the same problems as Pentox--immune suppression and adverse effects on blood...

Immune suppression might well be part of how it offers benefit for peyronie's.
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]

james1947

I am still searching. If I will not find some warning that like Pentox is weakening the immune system, I may give it a try.
I am not young to have depression and don't want more children.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

wurzil

Hi

Re drugs, I'm surprised nobody has mentioned Prednisone. I had it for my Giant cell arteritus couple of years ago. (inflamation of the cerabal archeries. extremely painfull) Good drug but get off as quick as poss. Side effects are not good and can be difficult to come off.
To the point, l have severe pain/inflamation down left thigh & hip. Can be exacerbated by masterbation. I've been diagnosed Peronies. Have the bottle neck but not the pain in the penis. Leg instead.
I've worked it out (with my daughter who cured herself of psoriasis that Peronies is actually a connective tissue disorder which like Rheumatism is an auto-imune disorder as is Giant cell arteritus. l'm keeping the pain under control (sort of) with tumeric. Have been using 1 tsn 3.4xdailly in glass of water.
My daughter has just made me a herbal tincture (she's a naturopath) with tumeric and other anti-inflamatory herbs. (Works as good as ibrufen) without the side effects

Now here's the rub. If you google connective tissue disease and gluten you'll find that gluten plays a major roll in all auto-imune disorders. ln fact this is how, despite what doctors said, my daughter cleared up her psoriasis. I'm amazed l can't find any reference to this on this site, What l also know is that doctors no nothing about gluten intollerance. not celliac (trained courtesy of drug companies.)

I'm also taking homeopatic cell salt silica to drive out the toxin causing the pain. Cell salts are 6x potency to render the silica more readily absorbable.

Hope this helps.






skunkworks

Quote from: wurzil on August 25, 2014, 06:18:10 AM
Now here's the rub. If you google connective tissue disease and gluten you'll find that gluten plays a major roll in all auto-imune disorders. ln fact this is how, despite what doctors said, my daughter cleared up her psoriasis. I'm amazed l can't find any reference to this on this site, What l also know is that doctors no nothing about gluten intollerance. not celliac (trained courtesy of drug companies.)

Grain free diets are mentioned many times.
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]

UrsusMinor

Prednisone and other corticosteroids are mentioned many places around this forum, and in the literature.

Generally people haven't been too excited about the results of corticosteroids with respect to Peyronie's, but one French group believes that it can have substantial benefits for a subset of patients: http://www.ncbi.nlm.nih.gov/pubmed/16526540.

As to gluten, if you are genuinely gluten-sensitive, then you should avoid it, as it will cause inflammation. But I think the number of people who are gluten sensitive is wildly overestimated.

I once was in a health food store checkout line behind a woman who was buying all sorts of fancy gluten-free products, and was also buying three packages of seitan.

I asked if she was gluten-sensitive, and she said yes. I asked her if she ever had problems with seitan, and she said no. She almost dropped her groceries when I told her that seitan is nearly pure wheat gluten!

There is also some evidence that many people who believe they are sensitive to gluten are actually sensitive to water-soluble wheat lectins rather than the gluten itself. If you are eating things made directly from wheat flour, then the water-soluble lectins are in there with the gluten, and you will be consuming them both together. On the other hand, if you eat things made from vital wheat gluten, the water-soluble lectins have been washed away. (Sprouted or femented grains also lose most of their lectins and phytic acid, which is probably why sprouted flours and fermented grain dishes are important in so many traditional societies.)

In any case, avoiding things you are allergic to is smart...if you really know what they are!

I think there are far more people who are suffering inflammation from high carb intake/metabolic syndrome than from gluten, or lectins, or dairy, or any of the current suspects.

I think that when a lot of people go gluten-free, they feel better because they cut a lot of crap out of their diets--such as most baked goods. I also think that many people who go gluten-free cut down on carbs...at least initially, until they find sugar-and-starch loaded gluten-free equivalents to the crap they were eating before.

wurzil

Hi Ursis Minor

Yes l agree re gluten up to a point, but to be fair, my daughter manages to keep her psoriasis (and her son's) under control on a gluten free diet.
L do think that gluten has become an issue today due to genetic modification exacerbating the problem and of course every processed food has it.
I'm interested to see nobody specifically mention IBS of candidiasis or gout of metabolic syndrome in all the discussions. You'd have to think there is a connection.

I have become aware (in the last 24hrs) of the fact l have a disorder called Ankalosing Spondylitus. I'm being tested tomorrowfor  the HLA-B27 gene. (my daughter's tested positive) Now apparently there can be a connection between the back (fused spine, a result of Ankalosing Spondylitis) and the pelvic area. It doesn't specifically mention Peronies but l'm joining the dots. The London diet (starch free) can possibly negate the inflammatory condition and maybe Peronies??? Browse the link l've attached below See what you think.  Wurzil

The IBS Low-Starch Diet: Why Starchy Food May Be Hazardous to Your Health - Carol Sinclair - Google Books

UrsusMinor

Ankylosing spondylitis definintely might have a connection to the Peyronie's. Not only are they both connective tissue disorders, but AS and prostatitis are closely linked.

AS is the disease Norman Cousins famously "laughed himself out of," described in his book Anatomy of an Illness (video interview with Cousins here http://www.youtube.com/watch?v=mqLAcpXzNks )  [He also megadosed Vitamin C.]

I'm off to watch some Monty Python!

Michiganguy19

I have Reactive Arthritis and AS. I was on Sulphasalazine. Had to stop after a month though. Made me lose appetite and weight.
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