Thread for Guys in Xiaflex Trial - Currently or Previously

[pintor]

Dear Mending, i really appreciate your prompt reply.  It will be interesting to hear what others have to say.  I am very pleased with Xiaflex results so far.  Thanks. Pintor

[yyy]

Please share all the names of the most reliable xiaflex
Doctors.

At the moment I only heard about dr gelbard but he'a way too far from europe

[james1947]

I will add my voice to yyy:

Please share all the names of the most reliable Xiaflex Doctors.

Other members may benefit also from this knowledge.
I opened a topic at:
https://www.peyroniesforum.net/index.php?topic=5357.0

James

[Bent Dick]

I will add my voice to yyy:

Please share all the names of the most reliable Xiaflex Doctors.

Other members may benefit also from this knowledge.
I opened a topic at:
https://www.peyroniesforum.net/index.php?topic=5357.0

James

I live in northwest Ohio my Dr. said that he had been through the training and would like to start using the Xiaflex on me but he has never used it yet and I would like to go to a Dr. that has more experience with good results I don't want to be the Dr.'s first. My bend is about 90 degree and I lost three inch's, does anyone know of a experienced Dr. with good results in northern Ohio or lower Michigan that can help me get my life back.

[PMRT]

I am now almost 6 weeks out from my 4th and final round (final as far as insurance paying for it is concerned) of Xia-Flex.  This last round did not reduce the scar as much as I had hoped but I improved by about another 5 degrees.  It did, however, soften the remaining scar much more than past shots.  Summary:  I am probably at about 35 degrees dorsal curve, down from 65 degrees or more.  The pull to the right is reduced as he concentrated on that side last time.  Overall the scar is probably down 50-75% in size but is still far larger than I want to live with.  Erections are firm and "usable" (funny way to put it, I suppose).   Clearly everyone is going to react a bit differently to the medication.  I'm guessing (and will ask the next time I see the doctor) that I had a scar on the larger and denser side since I see some have had more dramatic results.  For those of you who have not started this you may be thinking the scar melts symmetrically but that is not necessarily the case.  

Both Dr. Connors (Men's Health, Boston) and I agree I could likely benefit from continued rounds of Xia Flex.  I am paying for it myself now.  I found out yesterday the cost to me is $6662.00 for two shots (one week's worth). The drug is apparently discounted slightly when one pays out of pocket.  On top of that there is the cost of pain block medication and the doctor's fee.  Add 1.5% if you pay by credit card!  Hey, this is a business.  Anyway, I am perfectly comfortable with this procedure now so I will go for round 5 and even more rounds if the doctor says continued improvement is likely.  When there is something more to report I will get back on this forum and do so.   You can email me at paulmrt57@gmail.com

[Mending the Bend]

I found out yesterday the cost to me is $6662.00 for two shots (one week's worth). The drug is apparently discounted slightly when one pays out of pocket.

See if you can negotiate with the drug company or pharmacy purchasing the drug to buy it for the negotiated contract price they receive from insurers. I am billed roughly the same amount ($6960) but my insurance plan reduces that to the "eligible amount" of $4525. My insurer pays 75% of this and I pay 25%. So offer them a bit above what they get from insurance, maybe $5k. Still pricey, but less so.

[LWillisjr]

My bend is about 90 degree and I lost three inch's, does anyone know of a experienced Dr. with good results in northern Ohio or lower Michigan that can help me get my life back.

I know it is a bit of a drive, but would highly encourage you to consider Dr. Levine in Chicago.

[pintor]

YYY asked about Doctors.  Mine is Dr Gary Price in Arlington Texas.  He was involved in the clinical trials for xiaflex and I chose him for that reason.  Excellent Doc who has helped me a lot with this condition.  I have not yet heard if my insurance will pay for a 5th round of treatment.  If not I will not be able to pay for more treatments, but if my condition doesnt worsen I am happy with the improvement as I stated in my previous post.  Good luck to all.

[PMRT]

To: Mending the bend:
Good point.  I tried calling the medication maker but they won't even talk to me.  I paid the amount noted in my recent post at my first appointment and had the 5th round last week.  I had far less swelling and almost no bruising compared to past rounds but swelling/bruising is irrelevant.  It goes away and heals pretty fast.  My doctor says to his knowledge I am the first individual to go 5 rounds.  It is not a distinction for which I ever anticipated being known (ha).  Anyway, for what it's worth during modeling the doctor said he could literally feel bands of scar/plaque "giving way".  He was crunching so hard his hands were shaking during the pressure and a bead of sweat came to his brow.  He also went an extra round.....4 instead of 3.  Thank god for pain block.  

I left his office and immediately drove 8 hours to PA.  Very mild discomfort if any.   I mention this only for those who have never had the treatments and are trying to gage what it is like after having gone this many rounds.   I also wish to add for those reading for the first time, my first round of Xia Flex back in March was nasty.  Read my earlier posts.   In summary, for me it got less eventful each time.  I fully expect to go a 6th round and have already set the appointments.  I may go a 7th round if the doctor says improvement could continue.   The finance people at Men's Health Boston are super so I may ask them to negotiate the drug cost for me.  When the swelling goes down to the point where I can more accurately assess improvements I will post again.  

[RB3]

does anyone out there know anything about dr Brant in Salt Lake City for Xizflx, his office says they have done hundreds of treatments so far.  Any words would be welcome
thatnks

[james1947]

RB3

I don't know Dr. Brant, but you can pass your posts true the speller, we will understand better what you are writing.

James

[foreveryoung]

After 2 years I've returned to this site after given up on peyronies treatments I just heard of Xiaflex.  Can anyone tell me:  1)can you have sex during the treatment protocol schedule, and 2) how rigid is the schedule?  Sometimes work, travel, etc get in the way of EXACT timing.  Is it moderately flexible[excuse the pun] for the injections?  btw, w/o insurance anybody know how much it costs?  rsvp and thank y'all.

[james1947]

foreveryoung

Reading this topic itself and other topics on the Xiaflex board it will give you all the answers and much more.
Just spend some time to read.

James

[Cantstopme]

Foreveryoung,

The maker of Xiaflex, Auxilium Pharmaceuticals, has a program called "Auxilium Advantage". Ask your urologist about it. Its a co-pay assistance program that pays up $1000 (US), per Xiaflex vial, toward your out of pocket costs. They even sent me an official "Copay Assistance Card"! So far, with my insurance coverage and this benefit, I have paid zero out of pocket for the first two series of injections.  

[Ive]

foreveryoung . In this country the protocol demands no sex for two weeks after each injection. That is unless your consultant advises more time. Hope that's helpful.

[foreveryoung]

I'm intriqued by the mention of an ultrasound to, I presume, would identify the area, location, and thickness of the plaque, and[I also presume], whether or not it has been calcified.  Is this a protocol used by more capable physicians or what??  Should a P.D. patient 'demand'/encourage it?

[james1947]

Quotes from foreveryoung:

Is this a protocol used by more capable physicians

Yes

Should a P.D. patient 'demand'/encourage it?

Yes

James

[jc961]

Well I go in tomorrow for my first shot and Thursday for the second. Any advice for prepping tonight or tomorrow to make this a little better experience?

[Mending the Bend]

jc961 -

If you've got a good doctor, and he's identified the right location for your shots, then there's nothing else you can do at this point - so try to relax. I've had 4 Xiaflex injections so far, and the procedures themselves aren't a big deal - a little prick and some pressure when the needle goes into the plaque. If you (and the doctor) feel that pressure, then it's a good sign. Do your daily modeling and traction after the 2nd shot and please keep us posted on your results. I hope they're excellent.

Mending the Bend

[jc961]

Thanks Mending! I will definitely keep you guys posted!

[foreveryoung]

Has anyone had an experience with Xiaflex and the Veterans Administration that they'd like to share?

[jc961]

OK guys just had my 2nd shot done this morning. This is my experience from yesterday and today.

Wednesday the 8th 1st shot:

Arrived at 8:40 am for my scheduled apt. The doctor came in and explained the procedure once again to make sure I understood what was to take place. The first thing was to give me an injection to induce an erection, then take measurements and mark the area of bend where the plaque was. After this we would wait until I became flaccid and then do the injection of Xiaflex. No big deal or so I thought (as well as the doctor)! I received the injection around 9:15 am, measurements and markings were done and the DR said I will be back in about 30 minutes to check on you to see if the erection has gone down. 30 minutes later still hard as a rock, so he gave me another 30 minutes. When he came back in still no change. He said he had not even given me a quarter dose to induce the erection and my body must have really taken to the stuff to still have an erection. We decided to wait another 30 minutes....well still no change. At this point I had 3 options...1) Continue to wait it out, 2) Reschedule (another 3 month wait) or 3) He could drain some blood from it. I decided to just go ahead and have him drain it.
He gave me a numbing shot, which was extremely painful and drained about 3 syringes of blood from it. At this point my erection started to fade away. By the time he cleaned up from withdrawing the blood....behold....my erection came back! We decided to try ice packs, which did the trick for the most part after about 30 more minutes. I was still a little stiff but not hard per say so he went ahead and did the Xiaflex shot anyway. He was able to get into the plaque pretty easy. He did warn me that with the numbing shot and blood withdrawal that I would more than likely see some major bruising and tenderness. Boy was he right about that! My penis looks like a thumb that's been smashed with a hammer! Not really painful, just a little discomfort. The swelling right around the area where he took the blood was a little extreme, but an ice pack last night brought that down significantly.

Thursday the 9th 2nd shot:

Arrived at my scheduled time and was taken back immediately. The doctor was not surprised by the swelling and amount of bruising on and around the penis. He felt around and said that he could already tell that the plaque was softening which was a really good sign. So he administered the 2nd shot. This time he said that he could get into the plaque more easily than the day before. I do have to say that this 2nd shot to me was a little more painful than yesterdays shot due to the tenderness and he said he could get more into the plaque because of it being softer.

I have been able to move around good with very little discomfort, only a mild burning sensation where the blood was taken from when it rubs the wrong way. Also just a bit of discomfort when I go to sit down or stand up, other than that not to bad! I start the modeling exercises tomorrow. I had the option to drive back to his office tomorrow to have him do it or do it myself, I chose to do it myself.

That is my experience so far. I will keep you guys posted as to how it turns out. Right now though my penis looks like something off of American Horror Story lol. Wish me luck!  

[james1947]

jc961

Wish you luck and excellent results

James

[pointedly]

@jc961 - There is an injection of some drug that reduces the erection.  I had the same choice of waiting out the erection or having the injection of some type of alpha-agonist, and I chose the latter.  It was a bit painful, but nowhere near what you described.  I also had my 1st Xiaflex that day and had minimal bruising.  I would suggest doing some research before your next appointment on what types of injectable drugs are available to eliminate an erection.  I go to the Mayo in Rochester, MN and their Urology department may be able to tell you the name of the drug if you run into a dead end.  The "blood letting" sounds a little extreme!  Yikes!!!  My experience with Xiaflex has been pleasant compared to Verapimil (if you've tried that).  

Good luck and thanks for your post!

Pointedly

[hope4all]

Thanks for the info jc961, good to know. I'll let my dr. know that I'm sensitive to most meds and usually don't need much to get the desired results.  Good luck!

hope4all

[PMRT]

Tomorrow I start round six (which, at the end of this week will be 12 shots total).   For those who have not read my posts four     rounds was not enough. I was still experiencing improvement so I decided to go for more rounds at my own expense.  I did get the $1000 discount on each of the first four rounds, however. My doctor says choosing four rounds as the protocol by Auxillium and the FDA was somewhat arbitrary anyway and there was no medical reason why more rounds could not be administered.  I am his  first (and as far as I know) only patient to go more than four rounds although I will ask him this question as well tomorrow.

Now at the end of round five (and it really does take a full 5 weeks for ALL the swelling to go down so you can assess reduction progress) I have again experienced some more size reduction in the plaque, although to me it seems (expensively) minor.  That is a bit disappointing. I had hoped for far more "melting".  Stubborn little bastard!  I probably have a few less degrees of curve (I'd say I am at 35 degrees down from 65 degrees) and the pull to the right has straightened out some more.  To that extent it is improving precisely as I predicted:  Until it gets down to or below the size it was when I first started experiencing curvature I am still going to have a significant curve.  However it is straight enough to manage intercourse but I have to confess during the act I find I  am now afraid of damaging it (again??).  That doesn't help when it comes to focusing on that which maintains erections, and feeling free to be forceful when the time calls for it.  I will ask the doctor about re-damage as well.      


To Yoga123: Send me an email.  The address is in my profile.

[NW Dude]

PMRT - I wanted to commend you on your report. I'm headed in for my first injection of Xiaflex next Friday... nervous.. maybe a little but yours & other reports are easing my "is this really happening" feelings.

At 54 my curvature seemed to .. pop up out of nowhere - don't recall any specific 'event' or 'action' that led me down this path. Oh well - I will say I appreciate this forum to read and nod at the similar experiences other guys are having.

I have a 'master-plan' to track-graph and possibly photograph my success .. I'm leaning to the success side of things here ... more for my self and my cheapness in justifying the cost of all this.

Anyhow be well all - I'll be back.      

[Knight]

Pointedly - Are you being treated by Dr. Trost? I start the injections on October 30th.  

[jc961]

Just a quick update!

It's been exactly 1 week since my second injection. I still have the bend for now, but the plaque has gotten extremely soft compared to what it was! All bruising and soreness except for one little small spot (where he drained blood to reduce my erection) has gone away as well!

I do have a question? I've heard people say they felt or heard a pop in their penis when the plaque finally starts breaking apart...what is the time line for this? Couple of weeks after the shots or longer? Will keep everyone posted on the progress (or lack thereof)!  

[Mending the Bend]

jc961 -

Not everyone hears or feels a pop or cracking sound; I never did. It's great to feel the plaque softening, though. Are you doing traction now? You should be doing it every day, try for at least an hour or two. The bend should improve as the traction lengthens the plaque which has been weakened by the Xiaflex. That's why it's essential to use traction for the entire 6-week interval between rounds. Hopefully you will experience gradual improvement over the next several weeks.

Good luck.

[jc961]

No traction at this time. Are you referring to a device? My doctor said he has seen good results with and without traction.

[foreveryoung]

OK, now confused.  What is 'traction'?  is it 'modeling'?/manual 'stretching'?  what?

[LWillisjr]

These are devices you wear that apply traction along the length or your penis. We have a board dedicated to this topic.

https://www.peyroniesforum.net/index.php/board,35.0.html

[Mending the Bend]

jc961 -

My humble advice is that you should be doing:
1) Modeling - manual stretching of the penis for ~30 seconds, several times, potentially using the plaque as a fulcrum to bend your stretched penis in the opposite direction of your curve.
2) Traction - with a traction device (I use an inexpensive one from X4 labs, seems to be almost identical to many other brands), for at least 30 mins per day, and preferably up to 2 hours.

The Xiaflex study showed that those who did traction/modeling had a greater degree of improvement.

[jc961]

@mending

Do you use the Peyronies Edition or the Premium Edition?

[PMRT]

It's Thursday night, the day of my second shot of round six.  Similar swelling as last few times.  No discoloration.  Minor discomfort but I am not handling it much either.  I am performing stretching as directed from day one.  I  do not use traction.   Tomorrow is modeling.  The first several rounds included three, 30 second forceful breakups. In the last couple of rounds the doctor went four, 30 second rounds. The doctor agreed with me; we both had expected a bit more size reduction from round five than I got so tomorrow we agreed on six or more 30 second rounds of modeling.  I suggested (and the doctor agreed) to have me back early next week and again late next week for additional modeling.  This is new.  It has never been tried before by any doctor to his knowledge.  Charting new territory so-to-speak.  I asked about self modeling.  He says it is ok but he doubts one can give it the force the doctor can give.  I tend to agree with that but perhaps there are plenty of you out there with high pain tolerance.

Some questions I asked and answers:
1. Now that he has 50-100 patients in treatment is anyone doing more than 4 rounds? Answer: he has one about to go for round 5.
2. How are his improvement stats as compared to the national average in the study?  Answer: better than the study averages so far.
3. Any patient with any bad outcomes?  Answer:  No, none.
4. Does he know the reason for some of the disaster pictures (I never looked at them).  Answer: No, but he feels if there is going to be a negative response it would probably be with round 1.  He has never heard of disasters occurring with subsequent rounds if earlier rounds were fine.  For those super-concerned about this, perhaps you should ask for a very small dose for the first round.  Just a thought by me.  Of course it uses up one of your rounds in terms of insurance, I suppose.
5. Would additional modeling be a benefit. He had never thought of that but yes,  he does believe it could help with plaque breakup  especially soon after shots while the medicine is still active.  Hence my extra rounds of modeling next week.
6. I told him about my concerns of re-damage during intercourse.  Answer: Agreed, one wants to be careful.  Woman on top is off limits in his view (my favorite, too bad).  Best is from behind.  Missionary is ok. From the side is preferred.
7. Even without Peyronies Disease I don't have the strong erections I had as a younger man and now with worrying about damage maintaining hardness is an issue.  Solution: He offered two ED meds.  Stendra (no name brand but just as effective and doesn't have the "empty stomach" requirement, and Levitra. Both preferred over Viagra in his view.  

Going forward:  Modeling tomorrow, next Tuesday and again a week from tomorrow.  Reassessment in 5 weeks.  At that time we decide if I am still progressing and we go for round 7.  Hey, it's only money.  OK, so sex isn't what it used to be but just the fact that I can penetrate and have closeness with my wife again makes me feel like a million bucks.  Good return on investment if you ask me.  I am back in the gym. I can concentrate on work and family and enjoy life again.  I sincerely wish the same for all of you. It is why I write in such detail.    

[jc961]

Without having to read through all the forums again...how long before you guys started seeing any straightening of your bend? I know it's different for everyone, just trying to get an estimate.

Thanks

[Mending the Bend]

jc961 -

My lateral curve reduced by about 12 degrees (from 39 to 27) within one week after my first injection. It was a very noticeable change. Subsequent reductions have been somewhat more gradual, but steady.

[dob32]

In November the lead docs from around the world are coming together to talk about there findings and how best to use the drug as in best ways to inject etc etc, My Doc is attending hence i am holding off from having it in case he learns better ways of using it. Some people beleive its best used with traction etc

[foreveryoung]

dob32,
"...coming together..." WHERE? WHEN?  WHOSE forum? details por favor?
foreveryoung

[Timdvm]

I have completed my 4th round of xiaflex and seen improvement in the bend and wasting, but the remaining plaque still prevents full rigidity in the tip or distal penis (which about 1/3 the distal length of my penis)    So I still get buckling or hinging at the site of the plaque.   Has anyone else had this problem and has it improved with xiaflex.   I am considering paying out of pocket for a 5th round but would like to know if anyone else has had it work for this type of problem.    
  And what is the cost out of pocket for those of you that are going beyond 4 rounds of xiflex injections?

[Mending the Bend]

Timdvm -

I will be starting round 4 next month, and I have similar concerns about still having buckling issues at the end of it. My curvature has improved dramatically, but hourglassing is still present (though diminished). I am hoping that these last two shots break up enough plaque to restore more rigidity.

Paying out of pocket will cost about $6k per round for the drug, plus doctor and facility costs. A steep bill, and I would also only pay if it promised a reasonable chance of success. The problem is that the doctors don't exactly know how best to use Xiaflex for hourglassing. It is easier to measure curve improvements, which is what they did in clinical trials.

How much improvement did you see from beginning to end in curvature? And have you been doing regular traction, VED, modeling?

[dob32]

dob32,
"...coming together..." WHERE? WHEN?  WHOSE forum? details por favor?
foreveryoung

It is in the USA and this month sometime, no idea on details as i dont see him again until feb, as i have to wait for my condition to settle. After looking at my condition pretty much said could get it near hundred percent with a few stitches and our health system will cover that. But the shots are not covered and 1200 a pop. So cost about 8k for the lot. Can only guarantee about 70% better with the shots tho. So he said hopefully after the meeting will be better at using the shots etc, as may be able to fix hour glass with it etc if used in certain ways

[Timdvm]

Hey Mending the Bend,
  I have seen a lot of improvement in the curvature when standing up.   But when laying down the buckling or hinging allows it to flop back to a 90degree bend just by the weight of the glans.   My hourglassing has improved as well.   I only have a single section of plaque dorsally remaining and I am hoping one more injection will have huge impact but can't pay 6,000.
   I am doing stretching a few times a day even though I am past the 6 weeks mark from the last injection.  I use the plaque as a fulcrum.   When erect I try to do the straightening.    What other remodeling have you done?  

[gyneguy]

I'm a newbie in this forum.  67 y/o male with a 90 degree curvature for 14 months.  I have had two rounds of Xiaflex (4 injections) with absolutely no improvement whatsoever.  I have asked Auxilium Pharmaceuticals if in their trials they had any success on round number three with two previous failures but they will not return my calls as they promised.  Has anyone out there had any success on round three with no improvement in the first two?  Thanks.

[ThisWontWork]

Hi Gyneguy!
You are not the only one! I participated in the phase3 trial. I started with 70 degree curvature. After 8 injection doc could measure ~60 degree curvature. More or less NO improvement Xiaflex is nothing but a fraud and only a moneymaker for Auxilium. It´s a mystery that FDA could approve this snake-oil. The answer is probably MONEY TALKS even in FDA - they are corrupt! You will never get any return calls from Auxilium !

[Full quote removed by Admin]

[Timdvm]

Hey guys.    
  I thought I would respond to the conversation.    Be sure to discuss expectations with your doctor.  Xiaflex is not a cure all.   I have had 8 injections and seen quite a bit of improvement.    But Keep in mind that your results are very much affected by the skill of your doctor in getting the medicine in the right location.    The plaque itself has also damaged the elastic fibers in the tunica and xiaflex will not repair it.   It only disolves specific types of scar tissue bands and will not repair the other tissues that have been damaged by the Peyronies
   Many people even in the trial saw no results - but enough men had enough change to warrant its approval.    I myself had a large part of the hard plaque dissolve - the tissue is now again soft, but the elastin was damaged by the disease I did not get that back so I still have a bend and loss of rigidity - but I am much better off than before the xiaflex- that's for sure.  

[LWillisjr]

Xiaflex is nothing but a fraud and only a moneymaker for Auxilium. It´s a mystery that FDA could approve this snake-oil. The answer is probably MONEY TALKS even in FDA - they are corrupt! You will never get any return calls from Auxilium !

You are certainly entitled to your opinion, but I think calling them corrupt might be a bit strong. There was never any promise that this drug would cure everyone. There was a lot of pre-release hype that this was the new miracle drug. And clearly there are some members here who have seen improvement from the use of Xiaflex.

[nick77]

Hi all,
I joined the forum recently and this is my first post, so I hope I am writing on the right spot altogether...

First of all, just congratulate and thank all the members posting their experiences. When you are diagnosed with Peyronies Disease it is quite difficult to cope with many unknowns: Why? How? Will I ever? What to do? Is this the best solution?  You know what I mean. For me, this forum has given me a lot of information as well as comfort, hope, advice... So, yeah! Thanks a lot really!

In my case, I am actually lucky enough to have run to one of the best experts in this field in my country, Spain. My urologist, Dr. Martínez-Salamanca is quite reputed in Peyronies Disease and since day one gave me a clear diagnosis, expectancies and treatment right away. He is a quite energetic and positive guy and was honest to clearly lay out the "contained" (so to speak) prospects of oral treatment (which I appreciated), but was also super clear in giving me hopes with combining it with PTT with constancy and patience! He prescribed Tadalafil 2,5 mg/day and Pentoxyfilline 400 mg bid. He also recommended daily massages with Argan Oil to stretch the penis trough a soft massage; at least it would not hurt.

He explained to me some of the latest insights in the results of studies he himself and other colleagues had conducted and are conducting and the ideas they are sharing with American colleagues when they meet in medical summits (Dr. Gelbard, Dr. Lue, Dr. Levine...). Reading that all these leading doctors were treating some of you, made me feel that at least I was trying my best and was in the right hands. Sometimes, I believe you will all agree, it is not easy to cope with suddenly having this condition out of the blue... (In my case I cannot get any explanation why...)

(I hope this introduction was not too long and off-putting)  But I thought it was important to come to the topic: My Xiaflex experience
Right on my first visit (I had done my homework in internet on this forum) my Dr. told me that apart from oral treatment + PTT (of which there were proven results of their efficacy) and surgery there was nothing else that could be done, except a new drug that was under clinical trial at that moment: Xiaflex. He informed me that it was not yet approved and unfortunately not available in Spain. However, he was trying to bring it.

Shortly after, the drug was finally FDA approved for its use with Peyronies Disease in the US. In the case of Europe, Xiaflex is called Xiapex and is readily available for its use for DC. Thankfully, this summer he told me that wanted to try Xiapex (I believe it can be used as a compassionate method and therefore no insurance will cover it as it is not yet filed with the European Medicine Agency as Peyronies Disease treatment) and he was going to do it with some of his patients.

I told him, after some light thought, that I wanted to try it as well, so we scheduled a date in October 2014.

To tell you a bit about my actual diagnosis and evolution data:
Since September 2013, that I perceived one first small lump, until I got the first appointment with my doctor (February 2014) I had developed a 30º upward curve highly hinged (somewhat like the penis was broken into 2 halves) and with pain when erect.
After my first visit in Feb 2014 I got a Doppler and 4 heavily calcified plaques were identified scattered around the penis in random places (how they got there, can somebody tell me?).

During the next 9 months even with the treatment (oral+PTT) I developed to a 55º-60º curve with a main hourglass and narrowing about 4 cm below the glans and another smaller hour-glassing in the same spot where I noticed that first lump. The pain had somewhat reduced but with the narrowing came an intense feeling of oppression in the area. The soft hinging had receded and now I had a hard upward-curved erection with a large lateral disfiguration (quite local indentation) and overall moderate narrowing from the point of curvature until the glans.

XIAFLEX shot treatment (October 15th 2014):

My treatment was somewhat different to the ones you all describe. I received 1 only shot of Xiapex in the location of plaque causing the curvature.

My Dr. also planned to have a different modelling technique, by injecting saline solution causing an erection to "play" with the plaque at an erect state 1-2 days after the shot.

The day of the shot I was both anxious, excited (and completely terrified to be honest...) He gave me the shot after giving me some local anesthesia and, truth be told, it was painful but somewhat manageable. He applied pressure and bandaged the penis. Told me to remove it after 2-3 hours.

After the shot, and when the anesthesia went off, I could feel intense heat and a tingling sensation, painful at times, but nothing too extreme. My penis swallowed immediately after I removed the bandage and became increasingly blueish. The next day, the swallowing was max and the color reached a nice dark purple but not too much pain except to touch (then it would hurt a lot...)
The next day I went for modelling, but as I had considerate swelling (nothing like double-sized but very noticeable) my Dr. told me to wait a couple of additional days for the modelling.

The swallowing was soon almost gone (4 days after the shot) and only the very dark superficial bruising was present when I finally went in for modelling. Unfortunately when Dr. Martínez-Salamanca tried to inject me the saline solution, I experienced agonizing pain. Perhaps it is my low tolerance to pain or it is that I was too tender, but we could not finally do it. So he told me to go home and to do the usual modelling (stretching) once the pain from the failed procedure had subsided.

So I did and repeated it every day for 2 weeks. Also he told me to bend the penis straight when erect for a while to stretch the plaque. I did this too once a day.

I was scared of having a full erection, but finally after 12-15 days I could get a full one. I measured myself, took pictures and performed a thorough comparison with the pictures over the computer. The result? 30º to 35º angle. I had lost 25º approx. with 1 shot! The hourglassing had also improved, in the sense that the deepest area of indentation was now flatter. However I still have an indentation and narrowing in both sides from the base of the glans to the origin of the plaque but the improvement can be definitely seen.

I cannot say enough how ecstatic I was! It is not perfect of course, but only with one shot I had reduced the curvature about 40%. I had read enough and was under the impression I was the non-ideal candidate: calcified plaques (maybe the calcification has improved thanks to the pentox this last 7 months... I have no way to know) and hourglassing... but the results are in my opinion fantastic.
As a note: Dr. Martínez-Salamanca told me that they were expecting 2 possibilities as per the experience with Xiapex in DC in Spain. If the first shot yielded no results at all, probably there would not be much gain in successive injections.

Now, with these results I am planning to have at least 1 more shot and hopefully have Xiapex approved for its therapeutic use in Peyronies Disease in Europe with all the perks and benefits of insurance coverage. It is definitely not cheap!!

Now I am continuing with the PTT and the oral treatment (I will keep you posted as, by the time I am writing this post I am getting the feeling I am improving further in the curvature...)

For the next shot I will ask my doctor if he can perform the modelling himself straight away, as I read in one of the earlier posts that Dr. Gelbard was advocating for modelling right away based on his experience...

In summary, I do not wish to impart any type of false hope or excessive optimism. I still have about 35º, narrowing, and so on... And perhaps I am one of the lucky ones with Xiaflex, but, honestly: before, I was just seeing my penis bending month after month (I believe the treatment was most certainly slowing the process, but nature was taking its due course, that's for sure...). At least now I know there is something that is giving me hope.

In my case it was that feeling of inevitability that killed me... Not knowing when it will stop the acute phase, the problems to have sex... you all know. At least I think there is now one more thing to fight this condition and for the posts I read I am not the only one satisfied...

I hope all of you get better. Please feel free to contact me and ask me any questions as maybe my post is too long, badly structured and perhaps left some important info out...

Thanks again for the forum!

[yyy]

Any improvement in length? You Also have a PRivate message