Developmental drugs & treatments - Still in trial or not approved for Peyronies

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George999

JW, what you are describing appears for all the world to be a topical anti-oxidant.  That would be very interesting, since it demonstrates the power of antioxidants against Peyronies to the point of being capable of even reversing the disease.  It also reinforces the concept of taking large doses of anti-oxidant supplements.  But this is indeed an interesting product with a delivery system that appears to work OK transdermally.  To bad that it faces a million dollar barrier in terms of drug trials to achieve FDA approval in the US.  I find that whole system disgusting.

- George

csup

There is a spray S.O.D. available that is for hair loss, wrinkles, skin healing, etc. Do you think there is anyway that it could penetrate into the penis and go after the plaque? I know it sounds crazy, but anything is possible I guess. Maybe I'm asking for too much here. Thoughts? crs

percival

JW
Somewhere on this site I saw a reference to superoxide dismutase - in UroToday - European Urolgy 2006. It said:

Quote'Superoxide dismutase No placebo-controlled study No longer relevant, withdrawn from market'

There still may be something in it though.

Regards,
Percival

JW

Percival,

Yup, it was my understanding that there was a similar product based on animal tissue (the original superoxide dismutase), but some people had bad allergies to that, and so it was withdrawn from the market.  The lrhSOD is based on human DNA and so my (minimal) understanding of the theory is that it would not cause the allergic reactions associated with the original.  That's also in a European Urology survey article.

JW

--------------------------------------------------------------
JW
Somewhere on this site I saw a reference to superoxide dismutase - in UroToday - European Urolgy 2006. It said:


Quote
'Superoxide dismutase No placebo-controlled study No longer relevant, withdrawn from market'

There still may be something in it though.

Regards,
Percival

mark501

Auxilium announced today that phase III trials of AA4500 use for Dupuytren's have begun in Australia and Switzerland.

Power

Hey Guys,

Looks like AA4500 it making progress. Check out the link below:

http://phoenix.corporate-ir.net/phoenix.zhtml?c=142125&p=irol-newsArticle&ID=933100&highlight=

Keep fighting the good fight.

Power

Hawk

I don't mean to rain on the parade.  I think and hope that AA4500 will represent some advance in treatment over Verapamil injections and other treatments.  It does appear however that the best case scenario is that AA4500 will reduce major plaque formations in concentrated areas of the tunica.  I think those with limited curvature and general loss of size from generalized plaque, and even those with hourglass deformity will gain little even if the drug wins FDA approval.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Power

Hey Hawk (and others),

May I ask what you think AA4500 will be able to accomplish should it be given FDA approval?

Power


Hawk

As stated:

Quote from: Hawk on November 20, 2006, 03:49:11 PM
AA4500 will reduce major concentrations of plaque formations on the tunica.  


Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Power

I am thinking that what you stated concerning AA4500 would at least help in erection qualities for those suffering with ED.

IMHO that is a pretty good benefit in the real perspective.

We will sooner or later see what happens with this drug. I will continue to hope in its efficacy to do anything to help peyronies sufferers.

Power

Hawk

Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

PJ

I just got back from the first visit to my urologist in over a year and I thought I would share the good experience and my hopefulness with you all. I brought in photocopies of the research on P, L-A, &C that I had mostly been directed to on this board. In addition I brought in Dr. Lue's list of publications and PDR references on Pentox. My urologist, who had to date done nothing for me but suggest Vitamin E, was very pleased to see this research (made copies for himself) and even thanked me for teaching him something! He then wrote the prescriptions for me (Pentox and Cialis) in three month scripts and asked me to keep in touch about results. (I am very glad I have good prescription coverage)

I don't honestly believe I will see much if any improvement in my condition, since my main issue is shrinkage and an hourglass deformity. But I am very hopeful that this may prevent further acute phases and any further decline. I'll keep a journal and report in after 3 months.
Thank you all for help and advice!
---PJ

Hawk

PJ,

That is  encouraging that your doctor was open to information.  I would say he is a keeper.

When you return, or if so inclined to make a special drop by visit, it would be nice if you would consider directing him to www.PeyroniesSociety.org and tell him to click on the forum button to  check out the our forum.

Keep us posted.  I am very interested in your results
Hawk

Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

PJ

Hawk,

I did mention the forum to him. He seemed interested only in that I was "corresponding" with patients of other urologists. He stated that he felt that was a very positive thing for me to do and while the research was clearly the deciding factor, he did listen when I talked about things I had learned on the board. I may not understand the medicine angle too well (I lack the background education) but being a psychologist I do know how to discuss research abstracts, so that helps.

The board's url was on the folder I gave him, and I shall directly discuss a board visit when I see him next. If he did come by the forum I am sure he would recognize our latest visit's description from my post but could not id himself as my DR due to HIPAA regulations.

When my next Dr visit is will depend on his comfort with prescribing refills and whether or not my insurance covers the visit. Not to get too off topic (and I am not looking for conversation on the topic of insurance since it has no bearing on anyone else's situation) my insurance does not cover visits for Peyronies, so they run me about $300 a piece. This visit was coded ED since that was a legitimate conversation in the Dr visit and will likely be covered.
---PJ

crv1200

Everyone,
  I am a person that had Peyronie's Disease in 1990 and no longer have it.  It lasted for about 1 yr.  It was very painful and to tell the truth I had not thought much about it until today when I happened to mention it in a conversation with a friend.   I wanted to post here to let everyone know what actually worked for me back in 1990 as far as treatment.  The doctor put me on Potaba for 1 yr and at the end of the end the last scar to disappear was actually the first one to appear.   In total I had 5 scars that all connected.  I will say that the only lasting effect of the disease is the size of my penis was about 1 inch shorter and not as thick. It still does curve back towards my belly which it never did before but not as bad as when I had the disease so it is not an issue.  The good news is I have never had anymore issues all these years and no problems with ED.  I am currently 47 yrs old and this happened in 1990 when I was 31.   Just thought you guys might want to hear a success story.   I will bookmark this forum and check back at times to see if anyone has questions.   Good luck to everyone.  I will never forget the pain I had with this little known disease.     CRV

Steve

Thanks for the info crv, it's very encouraging to hear from someone who's beat this thing, no matter how he's done it!  You might want to hit the 'NOTIFY' tab at the top of the messages in this forum.  That way, you'll get an email messag whenever there are new messages on this subject, and you can easily see if someone's asking you a question.

Again, Congratulations ;D
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

George999

Indeed!  I join Steve in welcoming you, crv.  This forum has far too few 'alumni' members who have been down the path and found the exit door.  Your post is very encouraging and very welcome.  We need more guys like you who have found the solution and can encourage the rest of us who are still paddling.

WELCOME!

- George

crv1200

George,
  I am more than glad to help in anyway I can.   I can't believe some of the issues that guys are having these days with treatment.   I wish everyone a Happy Thanksgiving and heal soon.

CRV

ComeBacKid

Hawk I'm curious as to how you came to this conclusion:

Quote from: Hawk on November 20, 2006, 03:49:11 PM
 It does appear however that the best case scenario is that AA4500 will reduce major plaque formations in concentrated areas of the tunica.  I think those with limited curvature and general loss of size from generalized plaque, and even those with hourglass deformity will gain little even if the drug wins FDA approval.

I guess I don't understand how one can come to this conclusion with knowing so little about the drug.  To me there are a lot of questions since the report from Dr. Jordan was so vague, we don't know much about just how good the results were and especially there was no part on size gained back.  If AA4500 even dissolves plaque a little it shouldn't matter if the plaque is highly concentrated or generalized, it could mean more needle pricks for one with generalized plaque though.  I seem to have generalized plaque and hardness all over my penis, perhaps the AA4500 would help improve VED results by making the plaque and tunica more spongy and flexible to stretch.  Perhaps AA4500 will be ONE part of a treatment used on peyronies, a new combination perhaps to attack the plaque.

ComeBackid

Tim468

Hi CRV

Nice to hear a success story. What is interesting is that you got better on POTABA, which many of us feel "doesn't work". Similarly, we have heard here of success with vitamin E, verapamil injections, etc - but none of these things work for everyone - with enough spottiness to the record to make using them seem like a waste of time.

My own experience with POTABA was that it did not work - but I never felt I gave it a fair shake. I found the sheer volume of pills I had to take to be too daunting, and so I simply tapered off of it by "forgetting" until I simply stopped (I was going to say my use "petered out", but that seemed too obvious...). I think my failure to take it was related to my youth (I was 20), and to the minimum effect of the disease on me at that time.

Do you now recall how much  and how often you took POTABA?

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

Quote from: pudder135 on November 23, 2006, 10:35:45 PM
Hawk I'm curious as to how you came to this conclusion:

Quote from: Hawk on November 20, 2006, 03:49:11 PM
 It does appear however that the best case scenario is that AA4500 will reduce major plaque formations in concentrated areas of the tunica.  I think those with limited curvature and general loss of size from generalized plaque, and even those with hourglass deformity will gain little even if the drug wins FDA approval.

ComeBackid, I just saw this question:

While we don't know a lot about whether the drug works well on Peyronies Disease, we do know something about the theory of its action an a lot about the delivery system.  The delivery seems to be the same delivery system used with injectable verapamil and other injectables used to treat Peyronies Disease.

I am surmising that AA4500 has to be repeatedly put in direct contact with scar tissue to break that scar tissue down.  A defined curve caused by a concentration of scar tissue (palpable plaque) would seem a likely target of repeated injections.  I do not see how very large areas (up-to the entire tunica) could be  targeted.  If a penis is uniformly involved, I do not see how it would be possible, or at least practical, to uniformly target the scar tissue.  My logic tells me that, if we target the scar tissue in a non-uniform method in such cases, it would cause curvature where none existed.
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

crv1200

Tim,
  It has been so long since I took the medication I am not sure what the dose what but I think it was 500mg 3 times a day.   I am sure that things work differently on everyone but I would give it a chance.  Like I said I took it religiously for a entire year.   Good Luck!


CRV

mark501

Auxilium announced today the temporary suspension of dosing of patients in Phase III trials for Dupuytren's. 27% of material failed the visual appearance test of lyophilized material in some vials of AA4500. It is likely related to higher than expected moisture content within the vial. There have been no reports of adverse reactions. There will be follow up on patients that have received injections in this trial. Investigation is underway to find root cause so that trials can resume. Moisture issue may be cured by extending the lyophilization cycle drying time & modifying manufacturing equipment to obtain lower moisture. Auxilium has requested a review meeting with the FDA to discuss the findings & plans to correct this issue.

Rico

After hours trading on the stock took it down 16%....it is down today also, not as bad....it must be a concern or they wouldn't of told the street(stockholders) and having to go to the FDA.... Auxilium doesn't believe it is a containment issue of the drug....let's hope they get there arms around it, all we need is another set back, going to market in a couple of years the way it is....

Rico
"The Sun Also Rises"

Rico

I just listen to the Auxilium conference call, not a what you call a warm and fuzzy....the top firms holding stock called in, looking for time frames ect.... a outside firm hired by auxilium spotted the moisture problem...this is reported to the fda, all trials stopped, a report will be put together, find out problem, being equipment or processing, then reported back to fda, then at that point in 30 days or so fda should give response.... seventy plus percent of batch they say looks fine, it was 27% that didn't hold out......the batch cost one million to make, they might have to throw it all out and start over.....

Rico
"The Sun Also Rises"

Rico

Was reading the message board on the day traders on Auxilium, it is a hoot:).....I do find these guys get to know enough about a company to be dangerous, and you have to take there post with a pinch of salt, the shorters of the stock of course have a gain to be made to run down the company, same as the people long in the stock...

I guess a hedge fund drop thiere position in the company on the 5th...might of knew of something, but again companies do sell off prior to year end for tax purposes, might be timing...and the stock has performed well in the last three months, up 100%+, so why not take profits...

What made me laugh is that they don't refer to it as the dupeytren contracture company, but the bent dick fixer..... one shorter said your better off fixing your bent dick with a sledge hammer:)....

Over all I don't think the company did that bad on the news....if you are a buyer of the stock and like it at $16., well you should love it at $13....it close today above $14...... or one can invest in sledge hammers:)

Rico
"The Sun Also Rises"

Liam

"I don't ask why patients lie, I just assume they all do."
House

mlassard

This is my first post, so please excuse me if I am not 'in place.'

I have been looking at this AA4500 development and just wondered if this may actually be a blessing in disguise.  I mean, does anyone know if this is something that may convince/allow the FDA to excuse the Phase 3 trials because of ethical matters associcated with placebo's (?) needels in the penis and QC?  Could this perhaps, allow for AA4500 to be released for Peyronies Disease before DC?  Maybe I am just hoping too damn much!

This may not make anysense, but it was just a thought.  Thanks for a great forum to see and share ideas.

;D

Liam

I wish you were right.  I'm afraid everything will be delayed.  But, I don't know.

Great post (in the right place). WELCOME

Liam
"I don't ask why patients lie, I just assume they all do."
House

mlassard

Thanks Liam!   ;D

I hope it comes out soon though....any other thoughts?

Have a great night!

Liam

You may not have seen my post a couple of weeks ago.  They called me to do the Dupuytrens trials.  It was in Atlanta and I live on the gulf coast of Alabama and could not commit.  Maybe a good thing.  I told them I was still interested in the Peyronies Disease trials.
"I don't ask why patients lie, I just assume they all do."
House

kenm

I am getting the feeling that this auxilium is a pump and dump.

Rico

I believe the research is solid behind Auxilium's AA4500, it was with another company and they picked up the ball so it has a lot of funding behind it as of now and WAS in the third stage......the processing of the drug or storage seems to be the issue and one would think they can get there arms around this soon and re issue it....

Sitting on the sidelines with a bent dick and being second in line to dupuytrens trials is frustrating for everyone....Hope is all we have and to take this away at Xmas is a sad thing.....it will be several months before we here anything, and I guess to try to stay positive.....

I myself don't know or think that aa4500 will be a cure for me....the hour glass is a tough issue to deal with... I hope that more ED drugs and drugs like aa4500 are in development, the better chance we all have in some day finding a better solution to our problem....

Auxilium has there back against the wall....I find for myself when this happens to me I do better with the task at hand...this is the only chance they have right now to stay in the market place,none of us  know if it will work for us...but if it helps some of the brothers then this will be good and once again all research in the area of peyronies is a good thing....

The Chinese wall will be crossed soon also, if they can't fix the problem, well you will see this in the stock price.....loose lips sink ships and companies can only blow sunshine up your rear end for so long......aa4500 for peyronies....2009..maybe:(....

auxl is there stock symbol...one can go to yahoo finance and put this in symbol look up and go to message boards ect..... sometimes the street tells you more...but again these day traders...well take them with a pinch of salt also:)...

Rico
"The Sun Also Rises"

mlassard

Happy New Year.... I Hope.  (This post effects us all, and I believe would be appropriate under all threads)

First off, let me extend my appreciation to the founders of this forum and their continued vigilance to freedom of speech of the Peyronie's Sufferers.

I have not posted on the forum much or for very long.  However, I believe that there is something that we all may be missing, and for that, we will NEVER achieve our goal of complete rehabilitation.

Please allow me to explain.  The 2 drugs in 'development' that hold any real hope for any of us are AA4500 & Pirfenidone (sp?).  Furthermore, under new trade initiatives with Latin America, it will soon be ILLEGAL to buy VITAMIN E!  (Or any vitamins whether they work or not are a debatable even among experts, but should it prevent us from trying?)

These remedies will never be allowed to reach the very people that we need these products, us.  Here is why....

1)  Pirfenidone (by Intermune) is largely controlled by 'Warburg, Pincus Equity Partners, L.P. and its affiliates' –

12/28/06   S-3
Registration Statements
   
2)   
a)  Warbug is one of the fundamental architects of the Unconstitutional Federal Reserve System created in 1913.  

b)  THERE ARE CUTTING EDGE MEDICAL TREATMENTS FOR ALL CONDITIONS THAT HAVE BEEN SUPRESSED BY THE RULING ELITE THAT ALLOW FOR, NOT ONLY THE CURES FOR ONCE THOUGHT TERMINAL/LIFELONG DISEASES, BUT LIFE EXTENTION TECHNOLOGY.

3) AA4500 (by Auxilium) is largely controlled by 'Perseus-Soros BioPharmaceutical Fund, LP"  --  (the information is in the SEC filings on their own website, look at it -- )
Form SC 13D/A
AUXILIUM PHARMACEUTICALS INC filed this Form SC 13D/A on Dec 11, 2006

a)  George Soros is a former member of the Board of Directors of the Council on Foreign Relations.  This group is an instrument of the Federal Reserve System and its partner the Bank of England to create World Government.

All of this information is Documented Fact.  I wish there was a magic pill we could take.  I have lost a lot of sensitivity, size in length and girth, and a huge amount of emotional worth.

It is imperative that you understand this for yourself and do you own research.  The best place to start is by watching the free Google video from Aaron Russo (who directed Eddie Murphy and Dan Ackroyde in 'Trading Places' among numerous other accomplishments) and sign the petition to abolish the Federal Reserve System.  

Commonly said is...'trying the same think over and over again is the definition of insanity"

If we don't truly see why we have not had any solutions to our problems, they will never be forthcoming.

http://www.freedomtofascism.com/  -- it is free

I wish you all peace and success in this New Year!

???






Tim468

>> it will soon be ILLEGAL to buy VITAMIN E!  <<

Unless I missed something, my vitamin E comes from Utah, and will not be affected by a trade agreement with South or Central America.

The profitability of a drug will definitely affect it's likelihood of being developed. A larg(er) pharmaceutical firm is not likely to even try to do something for which they will not make a sizable profit. As many of us as there are, we will never compare to the numbers of those with heart disease or diabetes. Our disease will remain an "orphan" disease (though it is true that far more suffer from Peyronies Disease than is suspected).


Much of the rest of what you say, like:

" ...Pirfenidone (by Intermune) is largely controlled by 'Warburg, Pincus Equity Partners, L.P. and its affiliates'... (and) ...Warbug is one of the fundamental architects of the Unconstitutional Federal Reserve System created in 1913."

and

"THERE ARE CUTTING EDGE MEDICAL TREATMENTS FOR ALL CONDITIONS THAT HAVE BEEN SUPRESSED BY THE RULING ELITE THAT ALLOW FOR, NOT ONLY THE CURES FOR ONCE THOUGHT TERMINAL/LIFELONG DISEASES, BUT LIFE EXTENTION TECHNOLOGY."

These strike me as conspiracy theory stuff, and I would prefer that such theories, even if "true", be moved to the "off-topic" area for discussion.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

kenm


tdsc

JV- Here is a link to a SOD, a spray

http://www.youngagainproducts.com/OurProducts/tabid/4206/CategoryID/4/List/1/catpageindex/5/Level/1/ProductID/60/Default.aspx?SortField=ProductName%2cProductName

However, it's not liposomal SOD, so unlikely to penetrate into deeper tissues.  On the progression header, there is a possible supplier of liposomal SOD.

Rico

AUXL has put out there 8k.... you can download it on Edgar on line.... they talk about the "meltback" of lyophilized cake was detected and the trails stopped on aa4500 in December.... they are trying a couple of techniques to see if they can correct this with a new batch....

They did say that trials for peyronies phase 11b will start in 2007.... this trial is to get the dose right... then of course will be phase 111.... and the beat goes on........

"The Sun Also Rises"

j

This discussion seems to be converging on something I've believed for a long time, which is that the only route to a solution for Peyronie's would be a drug with systemic antifibrotic action.  I also have Dupuytren's and have been following news and discussion on that condition for about 10 years now. In all that time, I've seen exactly one credible report of reversal, and it came from a person with IPF who'd been participating in a trial of Pirfenidone.

With Dupuytren's - unilike Peyronie's - there's just no fooling yourself about the efficacy of a treatment. Your fingers either get staighter or they don't, it's easily and objectively measured.  That person who took Pirfenidone had no expectation that it might affect his Dupuytren's - that came as a surprise.  Conversely the trial participants weren't selected because they had Dupuytren's and probably few of any other participants had that condition. So our sample size is 1, but it's a valid sample, and we have a huge number of controls, who've tried countless other medications or supplements againt Dupuytren's with no results.


George999

Pirfenidone has come up now on multiple posts.  This is just the kind of situation that fills me with frustration.  Just go out and google Pirfenidone.  You come up with a plethora of hits, some skeptical, but most extremely positive.  Same when you do a search on PubMed archives.  So here we have a drug with a huge degree of promise for a wider range of fibrosis sufferers than one can imagine, and people are dying, and we have to wait while all the i's are dotted and t's crossed in terms of research before we can get access to it.  Truly something is wrong with this system.  People who are late stage terminal should have access to promising treatments even if they haven't been run through all the trials.  Not to allow this is morally repugnant.  Well thats my little rant.  Aside from that, this is truly the most promising thing in sight beyond Pentoxifylline.  It should be at least fast tracked if it is not already.  At least they have given it orphan drug status.  The case that j points out in his post below is just so typical.  You would think things like that would ring some sort of bell, but unfortunately the people who make the decisions seem to be pretty hard of hearing on these things.  What is interesting to me, is that all of the testing that has been done, has been done with Pirfenidone alone.  Who might imagine what could be accomplished by combining this drug with other substances that attack other common vectors of fibrosis.  Don't get me wrong.  I DO believe in the FDA approach of thouroughly testing every aspect of new treatments through a system of well designed multi-stage trials.  But, as I stated above, I really believe that we desperately need a department of experimental medicine for dying people who are willing to voluntarily submit themselves to experimental treatments, followed by complete outcome analysis.  And I believe that much could be learned from such an approach as well, both positive and negative.

By the way, check this out:

http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100231
http://www.clinicaltrials.gov/ct/show/NCT00287729

And I could give examples with liver fibrosis as well, there is just all kinds of activity going on with this drug.

And note the title of this study:

"Pirfenidone inhibits inflammatory responses and ameliorates allograft injury in a rat lung transplant model"
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16153939&dopt=Abstract

"inhibits inflammatory responses" ... hmm ... why do all paths seem to lead back home?  In any case this drug is hugely important for Peyronies sufferers, because we will likely be next after the more serious diseases are addressed.  Don't assume that the manufacturer will not want to increase their market scope by recruiting Peyronies sufferers as potential customers.  This could actually be the breakthrough we are all waiting for.

- George

j

Google on "pirfernidone intermune lawsuit" and you'll see the real story.

http://www.findarticles.com/p/articles/mi_m0EIN/is_2003_March_25/ai_99165792
http://www.corporate-ir.net/ireye/ir_site.zhtml?ticker=ITMN&script=410&layout=6&item_id=446317


In 2002, the rights to pirfenidone were bought by a company called Intermune.  Intermune had a competing drug, Actimune, and they wanted to end the competion from pirfenidone, so they simply made it unavailble by buying the rights and sitting on them.  They were successfully sued by a man who had IPF and had been staying alive by taking pirfenidone. A setttlement was reached in which Intermune grudgingly agreed to do an FDA trial and make the drug available on a limited basis as part of the trial, so that people already dependent on the drug could stay alive, as inconvenient as that might be for Intermune.

On this basis it seems likely that pirfenidone will remain "in trials" as long as Intermune owns the rights to it.

scott

George,

Thank you for your rant, which expresses pretty much exactly how I feel.  Had I been eligible for the clinical trial on pirfenidone, which I doubt due to having other respiratory conditions, I would have had to stop taking any drugs which might conflict with the study's "purity".  This includes pentoxifylline, and possibly L-arginine and Vitamine E.  In addition, I would have only a 50 percent chance of receiving the pirfenidone, as opposed to the placebo.  On the other hand, had I been offered the pirfenidone with no strings attached to take and see how well I did, I would have taken it in a New York second.

I am also aware of the problems with the the company owning the rights to pirfenidone, but since their competing drug has not worked out too well, the clinical trials on pirfenidone may be forthright and honest.  However, the problem of drug companies "sitting" on drugs until they are ready to sell them is all too real.

To paraphrase the quote about the legal system, "the mills of clinical research grind exceeding slow but exceeding fine."

George999

Thanks J and Scott for the added information.  So why am I not surprised?  What a sad story behind Pirfenidone.  These robber barons are out to kill off anything that gets in the way of their wealth machines.  And I suppose you also heard of the failed IPF trial on Pirfenidone.  They called off the trial in the middle of the process because all the participants in the placebo group were dying like flies (none of the members of the Pirfenidone group died).  So what do they do?  They basically stamped the trial a failure and couldn't figure out where to go from there.  Apparently now things are underway again, but as you say, when a company wants to kill a product they just sit on it forever and declare gleefully that it 'needs more study'.  Shame on you guys!  Here you got me started again.  Too bad there isn't some way we could form an alliance with the CKD, IPF, and other fibrosis advocacy groups and really put the heat on these people.  But at least the power base is changing in Washington.  Finally, I am hearing about a congressional proposal for a new law to prevent the major drug pushers from PAYING generic vendor to NOT produce generic versions of their flagship products AFTER their IP rights expire.  Can you believe that they would do an underhanded thing like that?  What a perverted implementation of capitalism.  :'(

George999

One added note - It would be a VERY GOOD THING if Pirfenidone gets approved soon for IPF.  Know why and how that would affect us?  Because once Pirfenidone gets the nod as an approved drug for ANY purpose, that means that cutting edge docs like Lue will have the option of prescribing it for Peyronies (or other MDs for CKD, ect.) as an 'off label' use.  Much, much simpler than trying to prescribe a drug that is still experimental, because at that point, at least the major safety issues are pretty much addressed.  Also a bad thing that could turn out to be a good thing in the case of Pirfenidone is the fact that some people have actually been using it for quite a few years without any negative health effects.  All that lays down a solid safety record for the day that it does get approved and makes it more likely that Peyronies sufferers, at least those with the most severe symptoms, will be able to get their hands on it fairly quickly.  So, after all, the picture may not be that bleak.  Apparently, now, at least, Intermune has gotten the message.

- George

mlassard

Folks,

'Take the Red Pill' - Matrix Movie

I understand that it may be scary to think that there are forces that you are not aware of prohibiting you from accomplishing your goal.  'Our Goal.'

What floors me is that one can attack another for FACTS that are unknown to them.  This is just the tip of the Iceburg.  I am at a Library Comp. and only have a little time, so here it is.

Let's get our 'cure' or treatment so that we can live happy sex lives again.  I love you all....   :-*

***********************************************************

Anti-Aging Molecule Discovered

Korea Times | January 1, 2007
Kim Tae-gyu

A team of South Korean scientists on Sunday claimed to have created a ``cellular fountain of youth,'' or a small molecule, which enables human cells to avoid aging and dying.

The team, headed by Prof. Kim Tae-kook at the Korea Advanced Institute of Science and Technology, argued the newly-synthesized molecule, named CGK733, can even make cells younger.

The findings were featured by the Britain-based Nature Chemical Biology online early today and will be printed as a cover story in the journal's offline edition early next month.

``All cells face an inevitable death as they age. On this path, cells became lethargic and in the end stop dividing but we witnessed that CGK733 can block the process,'' Kim said.

``We also found the synthetic compound can reverse aging, by revitalizing already-lethargic cells. Theoretically, this can give youth to the elderly via rejuvenating cells,'' the 41-year-old said.

Kim expected that the CGK733-empowered drugs that keep cells youthful far beyond their normal life span would be commercialized in less than 10 years.

Other researchers here heaped praises on the discovery but they were cautious about the practical therapeutic application of the new substance.

``Obviously, it is an innovative finding. But we need to see whether or not CGK733 could really rejuvenate cells inside human bodies without generating side effects,'' Prof. Kim Sung-hoon at Seoul National University said.

Prof. Kim Tae-kook, however, is confident about the commercial viability of CGK733, believing the efficiency of the material was created using state-of-the-art magnetic nano-probe technology.

``We have the magnet-associated technology to identify molecular targets inside living cells, which allowed us to examine the mechanisms of CGK733 directly,'' Kim said.

``Unlike other research teams that must make candidates materials for drugs without being able to see their intra-cell activities, we know the precise mechanism of CGK733. So we have the better chance of making a success of the substance,'' he continued.

Indeed, Kim basked in global recognition last June when he and his associates developed a technology dubbed MAGIC, short for magnetism-based interactive capture.

MAGIC uses fluorescent materials to check whether any drug can mix with targeted proteins inside the cell. The results were globally recognized by being printed by the U.S.-based journal Science at the time.

``MAGIC is kind of a source technology to see inside cells. Based on the method, we also found a pair of promising substances that can deal with cancers,'' Kim said.


George999

Truly fascinating technology, but I'm not sure just how it would relate to Peyronies ???.  We've had a number of 19yr olds posting on this forum and I am sure that they are NOT suffering from cell aging.  In fact very young people (down to pre-teens) suffer from various forms of fibrosis and attacking cell aging is not a likely solution.  There are developmental drugs that DO attack fibrosis, but this is not one of them.  For those that are interested, here are the relevant links for 'The Red Pill':

http://eport2.cgc.maricopa.edu/published/v/va/vvalente43/weblog/1/

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_IUDs=16767085

- George

Julien

I've been surfing the web (all peyronie-related site) for the past 10 years, trying manual techniques, and the vitamin-bazare, and I can only conclude this :

There have been studies, trials, and so called 'miracle-meds in development' for as long as I remember (over 10 years) & I can only conclude : Don't get your hopes up, you WILL have to live with it.  ;)


George999

Julien, with all due respect, I think you are being overly pessimistic.  Medical science is only now beginning to unravel the secrets of fibrotic diseases.  And the medications to do the job do take a long time to develop.  There are scientific issues and political issues involved.  But we are closer to a solution now than we ever have been before and you can take that to the bank.

- George

Tim468

George,

Although I appreciate your enthusiasm, and generally agree with your optimistic outlook, Julien has a point. I would say I have the same point - the only difference is that I have been scouring the medical literature for over 30 years now, and I have had my hopes soar and be dashed. And so it is easy to imagine it will always be the same.

But Julien, remember that right now is a fertile time in the field of biology, and that new insights into the mechanisms of Peyronie's are finally being gleaned. This means that, in turn, ne treatemtns that hold out hope for all of us are on the way.

My point is that Julien is right - we WILL have to learn to live with it. But George and Old Man are right too - they and others who have been able to reverse their Peyronie's without surgery show us that something CAN be done about it.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

kevin

Hmmm...
If Intermune actually does continue "squatting" on a very promising drug (Pirfenidone)....
...and...
Intermune is a public company ("ITMN" on NASDAQ)....
...then...(just a thought)... if enough people in the Peyronie's, Duputytren's, & IPF online communities each bought just a couple of shares of their stock...

Control is Powerful. It's something to discuss.

http://www.corporate-ir.net/ireye/ir_site.zhtml?ticker=ITMN&script=2100

They claim to be moving forward, but if they don't...