First Post - Peyronies Newb in Japan - should I take Tranilast?

[PeyroniKirai]

Hi guys, just joined this forum today so this is my first post.
No idea why, but I woke up one morning in September 2019 and noticed a small indentation and a mild bend to the left.  Searched web and assumed it was Peyronies, went straight to a local uro who agreed it was probably Peyronies, and said he can't do anything with it.  He sent me to Toho Univ Hospital in Omori, Tokyo where I met Dr Nagao.  Nagao is Japan's leading (only?) expert on Peyronies.  He told me my bend was too small to do anything, but I could try supplements.  Have been taking Vitamin E 400 units (one capsule a day) for 8 months now.  No improvement.  
 If anything the indentation and angle are worse now than 10 months ago.  Indentation now goes 1/3 the way around and bend is about 20 degrees, so I went back to Dr Nagao yesterday.  He said the next thing to try is Tranilast and he gave me a prescription which is good till tomorrow, so I need to decide in the next 24 hours if I should fill it.  
 I read a 2016 FDA report saying they have "serious concerns" about Tranilast given orally, although it's used in Japan and Korea.  Neither Pentox nor Xiaflex are available in Japan.  
 
Does anyone have a view on Tranilast?  
Would the liver damage be permanent, or would the liver recover if I stop taking Tranilast after a month or two?
Any thought as to whether the FDA opinion merely constitutes political wrangling between pharma regulators in different countries?
Finally, has anyone taken Tranilast and seen an improvement?

Meanwhile I have also ordered a bottle of L-Arginine as I saw a post from Hawk suggesting it.  
Thanks all and hope we can beat this awful disease together.

[TonySa]

Very interesting, it's used for treating keloids and excessive scar formation including Peyronie's.  At least one study reported improvement of curve but didn't state degree of improvement.  Don't know much about it's side effects, but if liver damage is one-the doc could monitor your liver values w bloodwork.  How long is it recommended to be taken?  Please let us know how it goes.

[Guy_87]

Hard to say.  I get what you are saying regarding the FDA and international politics.  It seems it is not available here in Canada either.

Were you able to press your Doctor on it?  Ask his opinion and emphasize your concern for potential liver damage?  Can you call him back and ask him?  (How often does he prescribe it?  Has he had patients with liver damage from it?  Can he do bi-weekly blood tests to keep an eye on your liver enzymes ALT/AST? Etc.)

All I could dig up was the following but the studies referenced could also be selective.  I know here that it is quite common for Doctors to monitor bloodwork either monthly or at times bi-weekly with drugs that have the potential to cause serious side effects.


Adverse effects   

When given systemically, tranilast appears to cause liver damage; in a large well-conducted clinical trial it caused elevated transaminases three times the upper limit of normal in 11 percent of patients, as well as anemia, kidney failure, rash, and problems urinating.[1]

Given systemically it inhibits blood formation, causing leukopenia, thrombocytopenia, and anemia.[1]

[PeyroniKirai]

To TonySa and Guy_87:

I asked Nagao about the liver damage.  His reply was quite similar to TonySa's - which adds to my respect for your experience and this forum.
Also I should be more precise:  while the FDA report said that 11% of patients on Transilast exhibited raised level of transaminases up to triple the normal range, it didn't actually it causes permanent damage.  
 Dr Nagao told me that while some patients do have this problem with liver function, it's not permanent and will stop if you simply stop taking the drug.  He recommended I try Transilast and have blood tests done after taking it for a while.  If it seems to be overloading my liver, discontinue.
 However, he did also say "Transilast isn't a magic pill for Peyronies".  He doesn't want me to expect my penis will just go back to normal after taking some pills for a while.  He is not a typical Japanese doctor in that he lets the patient make decisions.  
 So what I will do is fill my prescription (90 days worth), start taking it and see how I feel.  I exercise a lot and am pretty well in tune with my body.  If I feel fine I will continue taking it until six weeks has passed and get a blood test.  I drink very little alcohol (one 330ml beer a day) but while I am taking Transilast I might stop altogether.   If the liver tests show no abnormality I will go back to Nagao and see if he wants me to do stretching or other manual self-treatment.
 

[TonySa]

Sounds like a good plan, I'd consider also adding traction or VED and low dose nightly generic cialis (2.5-5 mg)...all to help remodel plaque to healthy tissue.

[Guy_87]

Sounds like a well informed plan.  With regular bloodwork, you are playing it safe.  Cutting the alcohol is also a good idea and you should perhaps avoid acetaminophen/Tylenol as well as that too can be hard on the liver.

Keep us posted.  It sounds like a really interesting medication that has potential to help Peyronie's.

You could also look into a liver support supplement like Liv 52 but I don't know that it is available where you are.

Good luck.

[PeyroniKirai]

Follow-up on Tranilast:
Have now taken it for a month, 3x a day as prescribed.  I also almost completely abstained from alcohol for the month to be as gentle as possible to my liver.
Got blood tests at the GP as planned.  Tests came back perfectly normal, no elevated transaminases, nothing unusual with the liver.
The GP told me that Tranilast is a very common drug in Japan, often used for allergies, and that I needn't worry about taking it at all.

My urologist had prescribed 3 months worth of Tranilast.  I will now resume my normal alcohol habit, which is to drink a little with dinner a few nights a week.  Just to be on the safe side, I will get one more blood test in another 6-7 weeks so I know for sure that it doesn't affect my liver.  Then after taking it for three months I will go back to the urologist.

So far I have seen no change at all in the indentation or the curvature, no better, no worse.  
In fact, today I am one year in from first discovering I had Peyronies and there's been little change since then; maybe a little more indentation and 5 degrees more pronounced curvature than the day I woke up and saw that I was bent.  I guess I should feel thankful that it didn't get worse, but it's hard not to feel bad that it didn't just go away.  I want my pre-Peyronies dick back!