So, they want people who have had it for at least a year - but you can't have too much calcium in your plaque.
This, in itself, is somewhat of a problem. They'd have the MOST success going after newer plaques and they are less likely to be calcified. So, they say you have to wait a year - but then, once you do that - the plaques are worse.
Ugh... I suppose they are marketing it as a surgical alternative at 1 year post onset (cuz they want to charge 2k per injection = 12k) but still...
Second, if you are single and not having "regular vaginal sex" with a partner - you can't enroll. So, no single people...no gay people... nice. And, you can't have a hinge effect otherwise you wouldn't be able to have sex really.
Third, if you have hourglassing - which is a VERY common and distressing symptom of Peyronies Disease - you can't enroll... why is this?
So, good luck for this to be approved any time soon. They need 300 people to commit to like 10 visits w/ 9 injections, ultrasounds, etc... it's an insanely long complex study...and 100 of the 300 are getting a placebo....so you can be stuck with useless needles for a full year - worsening your plaque - to find out - woopsie - placebo!
How is it even ethical to do a placebo in this study? The needle causes damage. Many serious drugs dont have double blind placebo studies (chemo) - and they just compare the case to the average outcome w/o treatment.
Now i see why there are so many bad & ineffective drugs on the market... if this is how they are getting the drug through the FDA by having this pristine sample, they will have the approval & then docs will try to use it for hourglassing, calcified plaques, etc... not realizing those people were excluded from the FDA trial.
This phase will take a year to execute & then data analysis and reporting to the FDA + Approval will take another year at least... so it'll be on the market in mid 2013 if it succeeds... the trial is the only way to get it.
Its all a read tape game to get the drug approved to get it on the market. They pick the best of the best candidates so they can prove the drug effective. End the end most likely it will go along the lines of the VIs with effective rates from one end of the spectrum to the other.
Far as the ethical aspect, the drug company can give two hoots about sticking a man with the placebo to get there drug to pass the FDA even though it mite cause further damage. Remember in the end this is all about money and profits!
Iam worried that the attention that Xiaflex has gained for us Peyronies Disease suffers will turn against our cause when it does not live up to the hype that has been advertised about its wonderful effects of reversing the disorder. Then other drug companies will not want to even try to develop a Peyronies Disease drug in hind site for there short comings. They have a lot of money and resources riding on this drug if it fails to live up to its hype I am afraid its just going to turn others off to investing into a cure.
I hope I am wrong and it really does work in the end but my experience in the world tends to lean in the opposite direction. If it did work where real men were getting exceptional results or fully cured then I would pay the 12K without thinking twice about it.
Quote from: Woodman on November 12, 2010, 06:10:19 PM
Its all a read tape game to get the drug approved to get it on the market. They pick the best of the best candidates so they can prove the drug effective. End the end most likely it will go along the lines of the VIs with effective rates from one end of the spectrum to the other.
Far as the ethical aspect, the drug company can give two hoots about sticking a man with the placebo to get there drug to pass the FDA even though it mite cause further damage. Remember in the end this is all about money and profits!
Iam worried that the attention that Xiaflex has gained for us Peyronies Disease suffers will turn against our cause when it does not live up to the hype that has been advertised about its wonderful effects of reversing the disorder. Then other drug companies will not want to even try to develop a Peyronies Disease drug in hind site for there short comings. They have a lot of money and resources riding on this drug if it fails to live up to its hype I am afraid its just going to turn others off to investing into a cure.
I hope I am wrong and it really does work in the end but my experience in the world tends to lean in the opposite direction. If it did work where real men were getting exceptional results or fully cured then I would pay the 12K without thinking twice about it.
Woodman,
I have to say I've never been a big pharma cynic because I have friends that do good work in all levels of various pharmas from small biotechs (like auxilium) to giants like Pfeizer. These are people who slaved away in labs, never saw the sun, etc... and just want to improve the world...
However, that being said - now I am a cynic...as a matter of fact, I am gonna send this to one of the board members of a big biotech & former professor of mine just to get her opinion on it... because it's ridiculous to me that they can't do a multifactorial analysis that has a few calcified patients, etc... yes, I know it get more expensive when you include more people - but the patient payment is only around $500 - though I assume the physicians are getting $5000+ per patient... or more perhaps... given the extensive number of visits. So, the trial is costing them 3-5 million probably... for 1-2 million more they could make it multifactorial... and yes I am arguing this w/o doing any extensive analysis - but my underlying problem is the same. How can it be approved for all Peyronies Disease patients when it was only tested on these "perfect patients". And this is specifically what I want to ask my professor about.
Additionally, I share your concern about this failing - and there's 1 major reason. Numerous very important (and often ignored) study was published showing the relationship between
testosterone and penile structure issues. These studies strongly indicate that there is something going on with the prostate, Free T, or DHT conversion...which is truly the underlying cause in many cases (particularly the no-injury cases). So, one only dissolves the plaque to have it reappear. Specifically, :
http://www.ncbi.nlm.nih.gov/pubmed/12647000
http://www.andrologyjournal.org/cgi/reprint/30/4/363.pdf
METHODS: Eighteen male Sprague-Dawley rats of nine weeks old were randomly divided into three groups with 6 rats each.
Group A served as the control, Group B was castrated and Group C, treated with finasteride. Four weeks later, rats were anesthetized and blood samples obtained for the determination of serum testosterone (T) and dihydrotestosterone (DHT) levels; penile tissues were taken for scanning electron microscopy.
RESULTS: The T, free T and DHT levels in Group B and the DHT level in Group C were significantly lower than those in Group A (P<0.05). The tunica albuginea was significantly thinner in Group B than that in Group A (P<0.05), but there was no significant difference between Group C and Group A (P>0.05).
Elastic fibers in the tunica albuginea of Group A were very rich and arranged regularly and undulatedly, but in Group B, most of the elastic fibers were replaced by collagenous fibers. In Group C, the tunica albuginea was mainly composed of thick and irregular-arranged collagenous fibers. In Group A, there were abundant smooth muscle fibers in the trabeculae of corpus cavernosum, but they were much less in Group C and scarce or even disappeared in Group B. In Groups B and C, the diminished/disappeared smooth muscle fibers were replaced by irregularly arranged collagenous fibers.
I think Peyronies Disease may turn out to be a testosterone story more than just a cellular repair story, with auxilium treating a symptom of this as-yet undefined testosterone problem...and not the underlying disease - only to allow for it to come back (and more money for them, then I suppose). I am not saying this is 100% of the case - but men after prostate removal will naturally have had some deregulation in the testosterone pathway. People who have taken finasteride have horror stories all over the web (the Testosterone --> DHT inhibitor)
Quote from: Woodman on November 12, 2010, 06:10:19 PM
Far as the ethical aspect, the drug company can give two hoots about sticking a man with the placebo to get there drug to pass the FDA even though it mite cause further damage. Remember in the end this is all about money and profits!
As a doctor though, would you participate in this kind of research? It's surprising to me that so many urologists (who are obviously getting paid - but they still can pay the bills from their patient revenue) would be fine with this kind of trial.
Not only that, but a placebo that could worsen the condition is no placebo at all. This would completely invalidate the whole study.
Quote from: skunkworks on November 13, 2010, 05:10:15 AM
Not only that, but a placebo that could worsen the condition is no placebo at all. This would completely invalidate the whole study.
I didn't even think of that - but that is a very good point. This study needs to have some more oversight...when I asked a md / professor at a major university hospital about it, he said they didn't want to deal with getting it past the IRB. I dont know if he meant this particular study - or just pharmaceutical studies in general... but the IRB would certainly question the control group.
Also, an orthapedic surgeon told me recently that he tried xiaflex for dupuytren's and then just gave up with it (already) and went back to surgery... granted, this is a data point of 1... but i can't say i am shocked given how auxilium is designing these trials.
http://clinicaltrials.gov/ct2/show/results/NCT00755222?sect=X9015#outcome4
What do you think about this study ?
The Change From Baseline in Peyronie's Disease Questionnaire (PDQ) Peyronie's Disease Symptom Bother is outrageously low.
Ben
I will take a second look but this does not sound promising. La Peyronie's Is a secondary treatment for this drug.Maybe it is two different diseases? Ownly makes sense .I think we are a long way off for a cure , just a thought .
Fubar
Ben
Then again we have had men on the forum say xiaflex has helped them greatly.Maybe just a few from the study.To hear from the others would most likely ring a bell.But we might not hear from them as we know most keep this to themselves.
Fubar
The study mention that it excludes calcified plaques. That's maybe why it wasn't very efficient for those mens.
" Non-contiguous stippling of calcium was acceptable for inclusion "
I don't understand this since xiaflex is first designed to dissolve collagen mass, like in Dupuytren.
Maybe we will know further if xiaflex is more efficient on certain types of peyronies.
edit : to read the result take the left figure, called "mean". It's the mean score based on the 100 subject.
The right figure called +- deviation is less important for us.
do you guys think xiaflex will restore sensitivity/feeling to the penis? my penis has been numb for 5 years since my injury im really hoping xiaflex will give me my cure.
isnt there anybody with peyronies that have a problems with numbness?
agent0:
In my personal case, I did not have numbness, just acute sensitivity when touched even by my clothes. At times it got just about unbearable. I even used a numbing lotion to help with the pain which worked great.
After many months with this problem, it finally went away and the feeling got back to normal. My uro had no explanation for what happened with the pain.
Maybe someone will jump in and relate their experience with numbness. It could be a nerve problem caused by the Peyronies Disease symptoms or from any injury you might received. The nerve could have been damaged if you experience a trauma that caused your problems.
Old Man
thx for replying oldman
Ive had moderate numbness for around 8 years. The only thing ive noticed is increased bloodflow improves sensation. That and sitting less.
SSmithe
well i made an appointment with my urologist and im gonna ask him if he thinks i should do the clinical trials for xiaflex. so maybe if i get rid of the scar tissue my sensitivity will come back.
Do we know if Xiaflex will help with these conditions? I know that people with dents are not allowed to participate on the trial at the moment but has there been any talk with the people already on the trial if it will be used for these problems in the future?
I asked - but they don't know... they think, maybe, it will release the scar enough to allow the dented area to fill out again... but xiaflex has not been working for everyone - even with the curve. I think part of the problem is the damage might be more than just a collagen plaque... or maybe it is because they are only allowing 1 injection in 1 spot...and some patients need more.
Yeah my piece of bad news is I just got through with the Xiaflex trial and I came out looking even WORSE (!) than when I went in both with the dent and curvature. Had high hopes and now not too sure WHAT to do...
My piece of not-so-good news is I just got through with the Xiaflex trial last month and I came out looking even WORSE (!) than when I went in both with the hourglassing and curvature. Had high hopes and now not too sure WHAT to do...
nycsurfer do you have any problems with numbness or sensitivity? i too have hourglassing sometimes, but im really hopefull for xiaflex. im really sorry it didnt work out for you. do you have any indents when your erect?
i can definitely feel the hard nodule in my penis, can you?
My situation has gotten worse and I am holding out that they will expand the trial to people with an hourglass deformity. I have only had this disease (how I hate that word) for little over a year now and it has progress from a apple pip size bump to three fairly moderate bumps. One in the shaft and two just below the glans. It is so painful during an erection, especially during the time when you can cause the blood to flow in and increase the strength of the erection that it can hurt most. I just want the pain to go away. I can live with the hour glass deformity and the slight curvature (15degrees) as its still mainly as straight as an arrow but I just hate the pain it cause when erect. I feel sorry for the guys with a greater degree of curvature but envy that they are viable for the trial.
does collagenase elimate all the plaque? or does it just soften it? im really hoping itl get rid of indents also. i mean if it elimates scar tissue than it should eliminate dents right?
No collagensase just softens the plaque allowing it to be "re-modelled".
My urologist described it to me as a bit like melting wax. Once it's soft it can be re-shaped.
You really wouldn't want the plaque to be eliminated as there would be nothing there to replace it leaving you with a big gap!
I really hope you're wrong about that. That would mean for guys with shortening and narrowing, xiaflex wouldn't do anything. I'm going back two my uro in a couple of weeks. I'll ask him.
yeah i hope your wrong too. i have this dent that im really trying to get rid of and i really want this scar tissue out!
please reply back bummed out once you get your answer
Perhaps this is helpful:
http://www.springerlink.com/content/w186814545008546/
Although this piece talks both about "plaque digestion" but on the first main page quotes collagenase as being used in the "softening of plaque with subsequent restoration of penile symmetry and function".
Help!
Kempenstein
Do you read the book? The link you have given is to a site that sales the book and asking EUR 34.95 to download the book.
James
Yes I know James but if you read the first page after the abstract that is available on line it gives a very good description of the actions of collagenase.
And no I am not an agent for the publisher. LOL.
Most places I have consulted seem to talk about C "breaking down" or "softening" plaque. As I understood it removing the plaque in Peyronies just leaves a gap that won't be healed naturally. That is why in the Nesbit Surgery Proceedure it is necessary to remove a graft from the other side of the penis to the one you are removing the plaque from thus shortening it by a minimum of about 2cm depending on the extent of the plaque.
@Kempenstein
You dont know what you are talking about - all is BS!
I have had this disease now for 3½year - I participated in the phase3 open label trial. For almost 3 years I´ve googled internet for any information regarding this disease. There is No accepted solution yet ... even the uro´s know anything about this disease. All is just assumptions.
Quote from: Kempenstein on February 24, 2012, 01:29:14 PM
Yes I know James but if you read the first page after the abstract that is available on line it gives a very good description of the actions of collagenase.
And no I am not an agent for the publisher. LOL.
Most places I have consulted seem to talk about C "breaking down" or "softening" plaque. As I understood it removing the plaque in Peyronies just leaves a gap that won't be healed naturally. That is why in the Nesbit Surgery Proceedure it is necessary to remove a graft from the other side of the penis to the one you are removing the plaque from thus shortening it by a minimum of about 2cm depending on the extent of the plaque.
thiswontwork
If you will read the forum you will understand (maybe) that some on the forum knows what they are talking about. Maybe you googled the Internet with wrong definitions.
Your sentense
QuoteThere is No accepted solution yet ... even the uro´s know anything about this disease
is right. For this reason for some on this forum have certain things that help, for others other things. Regarding uro's knowledge, yes, most have much less knowledge that some on this forum.
You can continue with your pessimistic approach, is fine, most of us on the forum have hope and do everything we can to improve our situation.
Even we all are very frustrated by the situation we are because this disease most of us we are somehow more polite than saying
QuoteYou dont know what you are talking about - all is BS!
.
Even we don't agree with the ideas of each other.
Kempenstein
You are right that
QuoteMost places I have consulted seem to talk about C "breaking down" or "softening" plaque
Some people on the forum following some treatments get to situation that they can't feel anymore the plaques. It means brooked down or softened to a state you don't feel them.
In all the surgeries for Peyronie's today the doctors are making grafting to fill the removed plaque area. Some surgeries are not shortening the penis as the Nesbit procedure. Have a lot of information on the forum regarding surgeries for Peyronie's.
James
Quote from: james1947 on February 24, 2012, 05:12:54 PM
In all the surgeries for Peyronie's today the doctors are making grafting to fill the removed plaque area. Some surgeries are not shortening the penis as the Nesbit procedure. Have a lot of information on the forum regarding surgeries for Peyronie's.
James
James,
There are different surgical procedures. Not "ALL" of them involve grafting. It is specific to the type of procedure involved.
Les
Iwillisjr
I agree I have exaggerated writing "ALL", but the two surgery types most doctors are using today for people with Peyronie's that lost length to the disease are Incision with Grafting and Excision with Grafting or a combination of both.
James
I don't think we have enough data to conclude your statement. We don't know all the surgeries completed that also involve the various Nesbit type procedures or even implants. So we can't say that "most procedures" are excision/incision and grafting. And I personally know guys who did have excision and grafting and did not lose any length.
I don't mean to come across as being argumentative. I think we just need to be cautious about making assumptions.
Les
We are not contradicting each other on the fact that incision with grafting or excision with grafting suppose not to shorten the penis.
You wrote
QuoteAnd I personally know guys who did have excision and grafting and did not lose any length.
I wrote
Quotethe two surgery types most doctors are using today for people with Peyronie's that lost length to the disease are Incision with Grafting and Excision with Grafting or a combination of both.
I am not talking about Nesbit that usually is made to people that have curve of 40 deg. or less and have enough length and not about implats that is an other story.
Sorry if I had expressed myself wrong.
James
You dont know what you are talking about - all is BS!
Bit harsh!!
All I've done is supplied a link to a medical site and paraphrased my comments carefully with things like "Most places I have consulted seem to talk about ..." or "As I understood it".
Hardly stating a definitive line is it?
My urologist told me certain things but if people aren't interested or dismiss them in this way, I won't bother!
Kempenstein,
I'm sure many have read the article you have linked to including myself. It is an interesting study and it is always good to see new approaches to treating Peyronies Disease. I don't understand thiswontwork's comment to your post, but don't let one person's opinion shoot you down.
Quote from: lwillisjr on February 25, 2012, 04:58:52 PM
Kempenstein,
I'm sure many have read the article you have linked to including myself. It is an interesting study and it is always good to see new approaches to treating Peyronies Disease. I don't understand thiswontwork's comment to your post, but don't let one person's opinion shoot you down.
The article is not new - its almost 30 years old. You can read it all here http://www.patentstorm.us/patents/4338300/description.html
I think we should focus on the results of the new study which (according to a statement in auxilium's results released this month) should be published by June. It's by far the largest and most direct study of collagenase in relation to this condition and there are a number of members of this forum who have had very encouraging results. I think Kempenstein should be congratulated for taking the time to come onto this forum and pass on what his urologist has told him - I also think that each urologist will have his specific take on how the drug works and that the forum members shouldn't read too much into how this will relate to their specific conditions because the conditions of the trials are very rigid and therefore anything beyond that (i.e. how the drug will affect hourglass / shortening etc) is really conjecture at this stage. Instead I think people should focus on the fact that for the first time in the history of this disease, we appear to have a viable and non surgical treatment in the final stages of testing and development being backed by major drug companies - I for one find that very encouraging and it gives me a lot of optimism going forward.
If i was a lesser man and in a bad place with this condition, to come onto this forum and read posts by someone who has titled himself 'thiswontwork', criticising forum members, telling them that they are talking BS and generally being negative about the drug's development, well it might just get me down. As it stands, I've followed the progress of this for a number of years, have spoken to Urologists involved in the trial and read about the experiences of some other posters and for me the glass is half full ... I feel sorry that 'thiswontwork' went through the open label trials and hasn't enjoyed any of the benefits of this drug...but hey...Karma's a bitch
Both the article and the book in the links posted on the topic are from 1982.
It just shows that even 30 years ago had some studies regarding plaque softening by collagenase injections no uro's or drug companies had done something (to my knowledge, maybe I am wrong) to go forward with the subject during this long time. I suppose they had they reasons, not connected to the benefits people with Peyronie's may have from the treatment.
Ronners is right. First time we have a serious study made by a serious drug company in the subject and we can just hope that the treatment will be available also for calcified plaques (was excluded from the study), will not be too expensive and will be accepted by the medical insurance companies.
James
i was reading around the internet and i found this website where this guy has Peyronies Disease and his penis is numb he asked the doctor and the doctor told him this
"Your loss of feeling is not common; most men with Peyronie's disease with have little trouble with loss of sensation. While lost penile sensation could be due to other factors unrelated to Peyronies Disease, I will assume it is related to the central location of your plaque compromising your nerve supply. If this is true, and I have no way of knowing for a fact that it is since I have not examined you, I assume that your penile sensation should return once your plaque is reduced."
peyronies-disease-help.com/tag/corpora-cavernosa/
so hopefully if i take xiaflex and get rid of that scar tissue my sensitivity will come back also.
what do you guys think about that?
Quote from: nycsurfer on December 30, 2011, 12:34:22 AM
My piece of not-so-good news is I just got through with the Xiaflex trial last month and I came out looking even WORSE (!) than when I went in both with the hourglassing and curvature. Had high hopes and now not too sure WHAT to do...
Sorry to hear but you are not the only one. I was also in the phase3 trial - open label study. I have come to the conclusion that the modelling of the plaque is of no good rather it will worsen the situation.
I have got the impression that Auxilium really don´t know what they are doing? The instructions, given to the uros in charge for the injections, obviously lacking the right procedure to inject the substance into the plaque. Furthermore Xiaflex only have a "half-life" of APPROXIMATELY 24 hours and is only active directly adjacent(1-2mm) to the injection site. If you have a string of plaque along the penile shaft from the top to the bottom you can easily calculate how many injections you need to dissolve all of the plaque. I guess the shareholders will formulate some tough questions when the result will be presented if there will be any?
Hmm, that sucks. I have a long thin strand at the base of my penis.
Furthermore, I have been affected by sensitivity also, but in the opposite way. I tend to feel as if I can't hold out and have to prematurely ejaculate. It feels as if the plaque is pressing on something that makes me super sensitive.
Regarding Auxilium trial, in my opinion they know very well what they are doing. It is a very serious company.
Many of the results posted on the forum may be the uro's capability to do the process in the correct way.
They exclusions on the participants, like excluding any calcified plaque was made in my opinion to increase they chance to get FDA approval.
Xiaflex may not help people with calcification's.
We have to be patients and wait for the results.
Regarding the sensitivity and premature ejaculation I don't know if it is the plaque or other Peyronie's related side effects. Before Peyronie's I was able to keep the ejaculation whatever time I wanted and I didn't had any ED. Now I have both.
James
yeah before peyronies i could ejaculate when i wanted to too, but now i cant. i used to be so sensitive now im almost completely numb and i get hard flaccid everytime i ejaculate. and my penis is less filled with blood when is flaccid.
i really hope xiaflex will give me my cure. i really cant stand being numb anymore.
everyday is a struggle im constantly depressed. the one girl i really liked left me because i couldnt get hard when i was kissing or touching because im pretty much completely numb down there.
i had my injury 6 years ago when i was sexually frustrated and i pushed my penis down, head a loud crack and a sharp pain. and my penis went swollen then it went numb.
i was pretty sure i had to go to the hospital and i kept telling my dad but he simply would not take me because it didnt look that bad. so he convinced me there was no problem and he had the same problem when he
was younger.
so now 6 years have passed and i have a hard lump in my shaft, and if this drug dosent give me my nerves back il be depressed for the rest of my life.
i was 19 when i had my injury so i pretty much never had a sex life. sure i can have sex now but i can barely feel anything and when i change positions i pretty much go limp.... what a horrible disease.
Agent 0,
I feel for you man. My situation is bad, but yours sounds worse. I'd advise you to get on pentoxifylline right now, and get a script for cialis. It's not the best solution, but it's something proactive that you can do in the present, until a better solution comes along.
agent0
I am 100% in agreement with bummedout regarding Pentox and Cialis. I was adding also VED to the treatment.
This treatment helpend many and is helping me too.
Don't give up. You are very young and all your life is in front of you.
Also don't forget that as last resort an implant is available. It makes people more sexually capable that they ever was.
James
i also found this link to support my idea of peyronies compressing a nerve.
http://www.ncbi.nlm.nih.gov/pubmed/1668968
"[Lesion of the dorsal nerve of the penis in Peyronie's disease].
[Article in French]
Amarenco G, Casanova JM.
Source
Laboratoire d'Urodynamique et de Neurophysiologie, Centre Hospitalier Robert Ballanger, Aulnay-sous-Bois, France.
Abstract
Twelve patients with La Peyronie disease underwent complete neurophysiological investigation of the perineum including evaluation of the nerve conduction velocity of the dorsal nerve of the penis. A significant reduction was observed in this velocity with a reduction in the amplitude of the sensory potential in patients with associated disorders of erection or sensory disturbances (paraestesiae of the glans). A compressive lesion of the dorsal nerve by hard nodules buried in the dermis of the dorsal surface of the penis was suspected."
i really doubt i actually have nerve damage. i really think that the nerve is just being compressed by scar tissue which is causing numbness.
To be more easy to understand what to expect from Xiaflex, I will merge under this topic all the topics that are related to people expectations from Xiaflex.
James
what im really hoping for xiaflex is too get rid of scar tissue allowing my nerves to communicate so i wont be numb anymore. cross your finger! and pray to god
To cross fingers can't make any Peyronie's like damage!
Regarding pray to God, I believe always helping :)
To make any of the treatments for Peyronie's it may help also.
My father was saying:
Help yourself and God will help you!
James
indeed james1947, i believe xiaflex will help us all.
i just hope that i dismantles and disintegrates the scar tissue that plaguing us all.
so i made an appointment with my urologist on the 20th, and im going to ask him if he thinks i have sepital peyronies, if xiaflex will give me my nerves and sensitivity back, and when its going to come out? and how much itl cost.
and il probably get another prescription of pentox.
agent0
Keep updating us after visiting the uro.
All of us are interesting in any peace of information from a specialist.
How are you pleased in general with his knowledge and attitude?
James
so i found another site, about peyronies causing numbness from scar tissue.
http://www.ncbi.nlm.nih.gov/pubmed/1668968
http://radiopaedia.org/articles/peyronies-disease
1st one is really old from 1991 though
my urologist is alright hes been with me since the injury. he knows about xiaflex and he knowsi have scar tissue and numbness.
so got good good news yesterday at the urologist office. ;D
i dont have any nerve damage
the urologist said the reason that my scar tissue isnt showing on any of my test is because its too small to show, but he can feel the scar tissue and see that its really deep. he said its possible that the scar tissue is the cause of my numbness. but since the scar tissue is so deep the xiaflex injection could cause serious complications, but its a risk im willing to take in order to feel again ;D
agent0
Good news indeed.
Are you doing some preventive treatment in mean time not to let the disease to progress until the Xiaflex will be available?
Like PAV cocktail and VED?
James
nah the scar tissue is pretty stable. its been 6 years already so there wont be anymore progression of the disease.
at the moment i just need to stay sane and wait for xiaflex.
do you guys think xiaflex will work for really deep scar tissue? i asked my doc if the scar tissue maybe septal and he said "it could be".
hope so, part of one of my plaques is deep within me
does anyone else have decreased sperm volume because of peyronies? before peyronies my semen volume was so much and i used to shoot like crazy. now i barely shoot at all and my semen volume is so little
is this because plaque is pushing in the urethra?
agent0
As I have answered your PM my private opinion:
Your doc answer "it could be" is same as I will answer "could be life on the Mars".
Doctors answers should be more precise and with good explanation why they think so or so.
He can check if the scar tissue is septal.
Regarding
Quotei used to shoot like crazy
Peyronie's effected me also. Regarding semen quantity, I didn't observe difference.
I don't know your age, but age is also a factor, when I was younger (now I am 64)
Quotei used to shoot like crazy
, then the distance decrease during the years.
Regarding treatment, even your scar tissue is stable, some treatment may help. You never know how or when it will flare up again. This is Peyronie's.
James
wow i really hope xiaflex will give me my sensation back, im so sick of being numb.
so if xiaflex destroys plaque and collagen and scar tissue is made of collagen then it should work right?
At first my only symptom was numbness and the distal segment of penis which seemed "dead". Then came the plaque, the curve, ED, etc...
Before the trauma, I could have a hard on just rubbing my penis, without any mental or visual stimulation. After the trauma I had to be really aroused to get some engorgement.
I too hardly cope with numbness. Maybe you can try traction, it can be useful for you. As for Xiaflex no doc or patient can tell how it will work for you, the only way is to try it and see what will be happening.
Quote from: Ben on May 26, 2012, 02:26:00 PM
At first my only symptom was numbness and the distal segment of penis which seemed "dead". Then came the plaque, the curve, ED, etc...
Before the trauma, I could have a hard on just rubbing my penis, without any mental or visual stimulation. After the trauma I had to be really aroused to get some engorgement.
I too hardly cope with numbness. Maybe you can try traction, it can be useful for you. As for Xiaflex no doc or patient can tell how it will work for you, the only way is to try it and see what will be happening.
yeah thats exactly how i feel right now like a numb, disconnected penis. yeah we are the same ben. i cant take this numbness i try to be optimistic about xiaflex but then i think to myself that iv been numb for 6 years... my family tries to help me and tell me that xiaflex will give me my nerves back but they actually dont know either. it helps to cope though, till xiaflex comes out. it feels like i have a fighting chance. i need xiaflex to give me my nerves back. i cant be numb anymore.
Agent0 so like me you do not have Peyronie disease which is scar tissue on top of corpus cavernosae, but a closed fracture of the penis. Most of the time a penile fracture is really visible with a huge bruising, but sometimes, there is no blood collection. But the sequel of thoses untreated fractures are the same.
I was wondering for months if implant would be ok for me, but one thing surgeon don't tell you is that your body will fight against the implant (a foreign body) surrounding it by a lot of scar tissue. The second implantation, if possible, is really tricky due to a lot of scarring. Even the mecanical pump seems affected since scar tissue surrounds it because as the tubes it is perceived by the body as a foreign thing.
I realy hope xiaflex can help all of us, but I think it will be better for true peyronie than for penile fibrosis. But anyway we'll try, we don't have so much to lose.
Best regards from France - benoît
Ben
I don't have yet implant but from what I read on the forum and other Internet sources they are living the implat half inflated after the surgery not to let the scar tissues to shrink back the penis.
They are also giving a regime of exercising to prevent the formation of the scar tissues.
Also the constant usage don't let the scar tissues to be rigid.
I hope someone with implant will jump in and will say something from his experience.
James
hmm i dunno ben from the mri and doppler ultrasound my uro said there is no visible sign i had a penile fracture, but sometimes i dunno because i remember at the time of the injury i had a really sharp pain and heard a crack. i dont know anymore..
i think an implant is out of the question for me. even though if i get a implant that dosent mean il be able to feel again. i can get erections, but i cant hold them sometimes because i just cant feel flaccid or hard.
Agent0
Your doctor can see some plaque in the MRI and ultrasound? Maybe the fracture is not visible but you may have a scar tissue in this place.
If the doctor can't see the scar tissue, where he will inject the Xiaflex?
Regarding numbness, I still have but just mild. I think the Pentox, low dose Cialis and VED solved my numbness partially.
James
Quote from: james1947 on May 30, 2012, 03:52:57 AM
Agent0
Your doctor can see some plaque in the MRI and ultrasound? Maybe the fracture is not visible but you may have a scar tissue in this place.
If the doctor can't see the scar tissue, where he will inject the Xiaflex?
Regarding numbness, I still have but just mild. I think the Pentox, low dose Cialis and VED solved my numbness partially.
James
no my doctor said he cant see plaque in the ultrasound or mri because the scar tissue is too small, but he said he can feel it and its real deep. if i had a fracture regardless or not i have scar tissue there, but according to the test it says "there is no sign of a penile fracture". he can feel the scar tissue so im guessing he can inject the xiaflex there.
yeah my numbness is pretty bad i pretty much cant feel anything there on the underside. im hoping the xiaflex will cure me of this numbness. its hard to focus on anything in life when your penis feels dead all the time and its really numb and uncomfortable.
Has anyone of you had already any contact with XIAFLEX and can give us his experience with the treatment?
Quote from: Mathias on June 04, 2012, 12:14:29 PM
Has anyone of you had already any contact with XIAFLEX and can give us his experience with the treatment?
well in this topic the people that posted were part of the trial. go back a page or 2 and you can read their experiences.
https://www.peyroniesforum.net/index.php/topic,1458.0.html
Luc
So much nonsense in this thread. They need a placebo group bc the needling might cause improvements on its own. And similar results were optained with other deformities like central or hourgkassijg in later trials.its not a conspiracy