Xiaflex

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MikeSmith0

Quote from: Humorous3 on January 01, 2012, 01:51:49 AM
I did have a 4.5-5.0 cm increase in length.  As the curve decreased, the length increased, which I think was a natural process.

I think I missed this before - but since Xiaflex is in the spotlight, I wanted to clarify: You had a TWO INCH gain in size (5 cm).  That's quite amazing...but how long is your penis?  This is an extremely huge size gain for an average sized man (5-6 inches).  This is obviously an anonymous forum, so I don't mind asking (if we were in person, I would not be asking most likely!)  But I think this is an important thing to know.
 
You said the trial doctors did not measure girth and you did not measure it - but visibly, was there a change?

How have things been since the trial ended?  A woman in the dupuytren's study posted a video of her possible recurrence after the trial ended...I assume you are recurrence free?    https://www.youtube.com/watch?v=p787uTsNdAs (and she has many more vids)

With such a massive size gain like you had, why do you think Auxilium neglecting to report average penile size changes?  These were data points, after all, and this is a huge concern to men with Peyronies Disease.  Did you hear of other patients gaining anything like this?

james1947

Humorous3 was last active at April 02, 2013, 02:33:07 PM.
Hope he is visiting the forum as guest and will login to answer MikeSmith0 questions.
I don't know how I miss the fact you are mentioning MikeSmith0. Gain back of 5 cm it's huge, it will give back my original lenth before Peyronies :)

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

MikeSmith0

My doctor was in the trials, and I told him about this post.  He said there is almost no way he gained back 2" - it's virtually impossible.  Dissolving the plaque does not restore length like that...Peyronie's is not just a disease where you get a plaque - you also get tunical thickening and destruction of tissue aside from just having a plaque.  Xiaflex does not cure these things or restore elastin.  And, how big of a penis do you have that you lost 2"?? 8"?  

Also, my doc has operated on many guys who he gave the real drug to and who had no response or insufficient response.  It's interesting how "humorous" had such a perfect time in the trial and had such amazing results...don't you think?  He also quoted the trial protocol's with such perfection - almost as if he worked there.

Here are some REAL pics:  Auxilium Collagenase (Xiaflex) for Peyronies Disease - Clinical Trial Side Effects and Discussion  

Maybe he should post his "2 inch gain" ... especially since Auxilium completely neglected to report any size change data...despite measuring it in EVERY visit.  

andreflex7

I have a bend/twist to the left of about 30 degrees or a little less the left. When I measure, the right side (opposite of the bend) measures longer than the bended side. Is it possible that if the Xiaflex treatments are a success that my size would be closer to the measurement of my right side?


MattFoley

If the plaque is causing the bend and if the doctor hits the right spot and if the plaque responds to the Xiaflex, then yes, there is a possibility it will fix the situation to some degree.
Got Testosterone?

MeMo

does anyone know are there any feedback about xiaflex for hourglass or narrowing cases?
all feedbacks is related how the curvature got better.

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

RoyHobbs

I had an appt with Dr. Gelbard today in Burbank, who had more xiaflex patients in his trial group than anyone else in the country. I'll write up a recap of that appt when I have more time, but he pointed to me not having any hourglassing as a positive when assessing whether I would be a good candidate for xiaflex.

coh

hi all, last week i meet a uro in germany. he was involved in the xiaflex studies.  I ask him is xiaflex a option for me. Then he sais no. Xiaflex is only  for the early stage. But he  was definitely not convinced from xiaflex.  Complications with some  patients. Today  i can say: For me xiaflex is not the way.

acetyl

I'm considering Xiaflex treatment. Have had Peyronies Disease for over 4 years with stable curvature of about 70 degrees.  Also had almost 2 inch loss of length and some girth.

Is there a diagnostic protocol that includes imaging before administering Xiaflex?  Also, I have heard that Xiaflex is not effective on curvature due to calcified plaque.  Is that true?  If so, can the calcification of the plaque be viewed through ultrasound or other diagnostic imaging?

Thanks!

LWillisjr


I know that certain doctors use a color Doppler ultrasound for imaging to determine plaque location and to check for blood flow and any other issues that might be present. the ultrasound is done from many directions so that images can be taken to look around the scarring if necessary. Calcification does show up as 'speckling' on the image with the density varying to the degree of calcification present. I'm guessing that Xiaflex like Verapamil becomes much less effective on calcified plaque. But I'm sure depends on the extent of the calcification.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

GusVG

I actually have had a few shots of Verapamil and I can tell you that it has worked for me.
Tremendous change and progress - First off the best doctor I can ask for.
Before this I was so miserable, down and felt useless

james1947

GusVG

Can you give us some more details regarding your Peyronies and the improvements following the VI?
Please give us also the details of the doctor, other members may benefit from his knowledge also.

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

GusVG

First off, I may be the exception to the rule, but I can tell you that I had no girth, curvature was extreme and lost over a year - initial doctor was the biggest DUD. I never really had that much pain, nor did I ever had an issue with having erections, even to this date. The plaque I had and/or felt was on the left side and pretty much on the entire length. Some heavier than others. My new urologist made me feel very comfortable and gave me hope. Gave me 4 shots of verapamil one every 2 weeks or so, and after the second or 3rd I saw results. I had another shot today in an area smaller than previous - again if not for this doctor I am not how I would of made it through. It sucks! I'll let you all know once done, have 2 more shots to go, 1 every 2 weeks

GusVG

I'll ask the doctor next visit if OK to mention his name. Sorry, but I have to make sure it's ok with him, I owe him that and more...

rkmtulsa

I just read about Xiaflex for the first time today.  First drug cleared by the FDA for treatment of Peyronies.  But, $28,000 for a full treatment regimen?  Geez, it better be a miracle drug for that price tag.

accessteam

Has anyone actually gotten their insurance company to pay the $3,000/shot price of this stuff?

RoyHobbs

Accessteam-

There are multiple threads on xiaflex in this forum. You will find the answer to you question in the other threads. Insurance appears to be covering a large chunk of the cost for some members.

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

biocob

Hello, all.  I was diagnosed with Peyronies in January of 2013.  No hourglassing, 45 degree bend, early stages and stablized quickly.  Went thru verapimil injections twice with little benefit.  Tried a traction device with little benefit.  I waited for xiaflex approval for months and was on the phone with my urologist the same day that the FDA approved in last Dec.  I naively though that I would then just make an appointment and go in for a xiaflex shot.  But, no......not even close--though approved by the FDA, my uro could not get the drug delivered to him.  No reason given.  After a few more months of appointments and phone calls to the manufacturer to learn what the availability would be, I learned a few things:  my urologist will not be allowed to have the drug any time soon (lots of reasons).  In my state (Wisconsin) I could only find ONE urologist that was allowed to have the drug and do the injections.  There is some company reasoning behind this slow roll out that I can explain to anyone who wants to write to me.  It seems to be either a big secret or just poorly communicated so it seems like a secret.

Sooooo  I find and meet with the one doc in my state who has access to xiaflex, and I learn he has treated a total of ONE prior patients.  He has had the xiaflex training, however.  A month of questions and emails with his nurse regarding ins preapproval and.....my insurance denied coverage because I did not express that I was having pain or that it interfered with intercourse.  I IMMEDIATELy told the nurse that, in fact, I had pain and it interfered with intercourse (yes, I would have said anything at that point).  Thirty minutes later my ins company approved the treatment!!!  And I then received a confirming letter!!  Now I am waiting for another month so far to actually get the drug delivered to my doc, which is turning into another mystery hurdle.  Then I go in for the first shot.  It could be next week or next month or ?.  I will report here on how it goes.  I am hopeful.

RoyHobbs

biocob-

The FDA approval was a conditional approval meaning only certain urologists with approved training would be allowed to administer the injections. I think this is a good thing as a number of us here have been to urologists who knew less about the disease than us. But happy to hear you're on your way. I'm still waiting for approval, though my delay has been caused by a number of patients waiting in line and only one rep in Southern California dealing with all the paperwork.  

james1947

biocob

Did you ever tried oral medications for Peyronies?
It seems strange you got Verapamil injections (twice) and no any oral med.
Anyhow, wish you successful Xiaflex treatment and soon.
Don't forget to update us how are the results.

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

powderpowder

Does Xiaflex help guys regain lost length from Peyronies?  

biocob

xiaflex treatment update.  

Finally had my first two injections of xiaflex this week!  Monday morning and yesterday morning.  Lots of swelling and purple/red bruising and stabbing pain.  All fading by today.  Monday I go in for "modeling".  I am cautiously optimistic that I will see some improvement.  I will keep you all updated.  I will say this:  my doc and his office did a great job.  Calm and knowledgeable and right on top of things.  It pays to shop around for the best doc possible.  

By the way.......that little needle and the quick shot of xiaflex hurt a heck of a lot more than a 15 minute session with the verapimil shots (and the big needle).  Then random, spontaneous stabbing pain in my guy the rest of the afternoon.  The last episode was when I was standing at the walmart pharmacy counter, waiting for a pain pill prescription to be filled.  That sucked.  They almost called 911 as I was doubled over for two minutes.

biocob

James, I was prescribed pentox and took it for six months orally.  But that was only because I asked for it.  i was warned it probably would not work, and it didn't.  I also took: L-carnitine, L-arginine, vitamin e, ubiquinol, and low dose cyalis.  I don't think any of that did anything to improve my condition, but I was desperate, and so I tried everything i read about as I waited for xiaflex to be available. The one thing I tried that seemed to work a little was a traction device (I used the andropeyronie device from Spain).  I actually saw some small improvement.  I plan on trying it again for a few hours per day once i get past the first 30 days after xiaflex.  

Quote deleted by moderator. Please read the forum rules!!!


Noway

biocob i sense your lying every peyronies disease specialist or competent doctor that knows about peyronies disease will give you pentox as a first line of defence. All the medications you describe i highly dont think they didnt work some.  

james1947

What helped me to soften my plaques, three hourglasses disappearance, gain 1.5 cm from lost length and some girth is:
VED, Pentox, low dose Cialis, Ubiquinol.

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

CalSF

Hi, I'm just joined after doing a search.  I just had my first Xiaflex shots on Friday...Yes, Friday the 13th. LOL!  Let me give everyone some background...My Peyronie's is / was severe.  My penis angled down at 90 degrees, which from what I was told is the rarer way for the penis to "point".  I had plaque in three places.  I still have scar tissue which has given me the hour glass look.  I was fortunate enough to be put under the care of Dr Tom Lue at UCSF.  He's an incredible and hilarious doctor.  My original urologist first put my Vitamin E for a slight curve to the left and down.  It did nothing.  He then put me on Trental, three times a day...It also did nothing, and in fact, my penis eventually bent to it's 90 degree angle.  It was then that I was referred to Dr. Lue.  Dr Lue did an ultra sound and then upped my Trental dose to two tablets three times a day (working up to that amount over a couple of weeks).  Trental can be a little hard on the stomach.  Anyway, this dose did wonders!  My bend went from 90 degrees to about 20 to 30 degrees.  Unfortunately, the length is still affected and the hourglass syndrome is pretty severe.  So, on Friday, I had my first shots of Xiaflex (Dr Lue doesn't put all of the medicine in one shot, he does several shots in the general area).  Let me tell you, the needle itself hurts and the push of the medicine puts a jolt of pain through the body!  Afterward, the effects hit my right away.  My penis was swollen, purple, and a little scary to look at!! LOL!!  Honestly, I haven't felt very good over the weekend and had it been during the week, I would have had to miss 2 or 3 days of work.  My next shot(s) are tomorrow and work is aware that I'll be out for a couple of day due to medical reasons!  I really hope this does the trick, but I don't think I'll get the lost length back.  I'll keep everyone posted.

biocob

I went in for my xiaflex "modeling" today.  I had the xiaflex shots last Monday and Wednesday.  It (the modeling) was intense, but tolerable.  The doc said he could detect "crackling" and "popping" in the plaque and he said it seemed like it had gone well.  I detected none of that as I laid there, but it was sure good to hear him report it.  I now have to do 30 days of stretching and bending per the written instructions I was given.  So far, so good.  I am still hopeful that it will help.

I was pretty sore and not feeling so great for a few days after the shots.  The aftereffects were worse than expected.  

biocob

Hello, all.  I have an update on my treatment.  

I had my second set of xiaflex shots on Friday of last week and this morning.  I then go back for two more in mid October and the last two around New years.  And that will be it.  I would say that the first two shots in June eliminated about 1/2 of the bend.  I was tempted to just let it go at that, but the insurance was paying for everything and my authorization was about to run out.  So I am back at it to get rid of the other half of the bend.

By the way, the xiaflex shots are pretty painful.  Or at least they were for me.  Stabbing pain for a few hours afterwards.  It was bad enough that i could not drive myself home last Friday.  An the black and blue/swelling of my little man?????   very, very......bad!!!!!!!!  Pretty horrible to glimpse when standing at a urinal.  But it does get better in a matter of days.

james1947

Wish you to be strait again biocob :)
Continue updating us, any information on the subject is very useful for other members.

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

biocob

I am headed in for round three of the shots next week Wednesday.  (two shots per round) The goal is to finish up all four rounds of shots by the end of the year.  I will report here on how it goes

Knight

Good luck biocob! I just finished round 1 on I'm still very black and blue and sore in spots 4 days later. If it works it will be worth it. Please keep us posted on your progress!

UrsusMinor

I was originally very put off from Xiaflex from photos I saw of the aftereffects.

But what both Knight and biocob seem to be saying is that most of that is cosmetic. Am I correct about that, guys?

Knight

 I would say it definitely looks much worse than it feels. But for anything that looks that bad there has to be something fairly dramatic going on. I am sore, but judging from the way it looks I would think I should be curled up in the fetal position begging for death. Of course I am kidding, but when my wife insisted on seeing the damage I showed her and I thought she was going to pass out.  :-\

But for the most part I've been able to do whatever I needed, or in most cases wanted to do. There were a few times the first couple days after the second shot I felt I needed to get off my feet and take it easy. But the night of the first shot I drove 2 hours and went grocery shopping with my wife after I got home. Two days after the second shot I went fishing in my boat for about 4 hours and now the 4th day after I just went to the gym and did a full body routine in the weight room.

It looks bad but I'm able to keep going. The mental part of it gets to me and makes me feel weak at times but I'm pretty soft when it comes to doctors, hospitals and needles. It's sore but manageable. No pain meds at all.

dfurman

I would also like to share my recent Xiaflex experience.

After some success's with my earlier oral treatment I felt I reached a plateau and my penis did not completely returned to the straight and fullness shape pre-peyronies.
Following these forum threads closely I decided with my doctor Xiaflex was the way to go.

I just completed my first round yesterday and this time swelling was not as bad as first injection 3 days ago.

Thus far everything seems to be going well and I feel very optimistic this will get rid of remaining hourglassing and slight curvature.

My doctor stated in mild cases only one set of injections should do the job within a month or so.

However, I will likely be going for more since is approved by my insurance.

Will keep everyone posted and best wishes to all.


Successful plication surgery by Dr Peter Stahl Dec 2018. Peyronies since Feb 2007. Tried Pentox, Propolis, L-Arginine, Xiaflex (10 shots), PRP Shot, VED & Traction with no significant improvement.

james1947

dfurman

Keep us updated. It will help other to decide (or not) to go in this way.
Wish you very good outcome.

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

Woodman

Has Xiaflex treatment helped anyone with long term pain from Peyronies Disease? I thought maybe if the treatments worked on shrinking the plaque it might take the pressure off the nerves causing the pain.

bummedout

Recently went back to doctor Metro to inquire more about Xiaflex and the results he's having.  He told me that Xiaflex will really only break up the plaque and reconfigure scar tissue, hence the reason for modeling after.  So it's most likely only going to help people with curvature.  Trying to get rid of indentations, banding, and shortening is unlikely.

Unfortunately things are getting even worse for me.  I've developed even more plaques and I really don't understand how.  I guess the worse things get the more vulnerable you are for developing new ones.

Another thing is my shrinkage is getting real bad.  It feels like my plaque at the base pulls in the rest of my penis.....really uncomfortable all the time.
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Mending the Bend

bummedout -

I'm sorry to hear that your condition is worsening. I am also concerned about the possibility of additional or proliferating plaques.

Peyronie's is a pernicious condition, and Xiaflex is not a cure for it. However, in addition to helping with my curvature, Xiaflex has made my indentations less pronounced and improved overall rigidity. I also think that, when combined with modeling and traction, it could indeed improve length.

The one area that it is unlikely to help is with ED from to physiological causes (venous leakage, etc).


bummedout

Mending,

What doctor are you seeing?

Thanks.
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Mending the Bend


bummedout

Ugh....had a bad experience with him.
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
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james1947

From what I am reading on the forum, you are not alone bummedout

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

biocob

I went through the third round of xiaflex shots as of ten days ago.  Shot six did not go well.  I had some kind of reaction.  My guy swelled up like a dead animal carcass (huge! and purple and skin tight) and i came pretty close to going to the emergency room.  I got through that night with a gallon baggie of ice and pain pills and little sleep.  ten days later the enormous swelling is down by 2/3's, but still much swelling and tenderness.  my nut sack looks like the color of grape Kool Aid and i have pools of blood under the skin half way to my navel--very awful looking.  It is slowly getting better.  still very painful to the touch.  no idea if there is any permanent damage, but my doc says there won't be.

I have seen maybe 30 to 40% improvement in curvature through the first two rounds of shots.  Maybe even more after the third round.  I was pretty happy with the results and almost stopped at the second round--wish I had!! But I told my doc today that I am not coming back for the final fourth round of shots.  I don't want to go through that again.  that was terrible and scary in a way that is hard to describe.  my guy looked just like the pictures you can find on the net of bad reactions to xiaflex, but without the rupture.  

Good luck to all.  

Johnnybricks

Hello, I just had my first series of Xiaflex shots last week. I finally got approved buy my insurance. I've had peyronies for many years and have tried other treatments with no success. I was so exited to hear that Xiaflex was a new drug to help reduce the bend caused by Peyronies Disease. I did all my research before I decided to go ahead with the injections and was very skeptical about the outcome and side effects. I just want to let anyone know that is planning on taking Xiaflex it has been a very painful and scary process. I have hematoma's (blood clots) around the foreskin that I can't even look at from the doctor during the modeling visit. It felt like he was squeezing my cock with a pair of needle nose pliers for 30 seconds 3 times. So if your peyronies is manageable without pain and only cosmetically unappealing I would definitely reconsider the process. I'm sorry if I'm discouraging you I just feel you should know how my experience has been. Horrible and scary I just want my wang back the way it was without further damage from these injections. Good Luck

james1947

Johnnybricks

Keep updating us and don't be so scared after the first session. Most forum members had very good results from Xiaflex.

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

dfurman


I am not sure if the formula has been tweaked around or chemicaly altered but I too just experienced very nasty side effects 2 days ago  on my 3rd shot (2nd round). Still recovering from massive purple bruising and swelling.

First set of injections went very smooth last month.
Successful plication surgery by Dr Peter Stahl Dec 2018. Peyronies since Feb 2007. Tried Pentox, Propolis, L-Arginine, Xiaflex (10 shots), PRP Shot, VED & Traction with no significant improvement.

james1947

Maybe the doctors are still in learning mode?
Maybe the best results are when have "massive purple bruising and swelling?

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

yyy

The important thing is that bruising and swelling disappear in a week or so