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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Results from my Xiaflex injections  (Read 36985 times)

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UrsusMinor

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Re: Results from my Xiaflex injections
« Reply #50 on: September 17, 2014, 01:04:20 PM »

Re: Frame of mind--As baseball legend Yogi Berra once observed, "Half of this game is ninety percent mental."
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RoyHobbs

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Re: Results from my Xiaflex injections
« Reply #51 on: September 20, 2014, 04:27:57 PM »

RESULTS AFTER FIRST ROUND OF INJECTIONS

On Wednesday I had my follow up appt and prep for my second round of injections. I'll post about the experience after I complete the cycle and modeling on Tues. But I wanted to quickly report that I had a 24 degree reduction of my dorsal upward curve after one cycle. I went from 79 degrees to 55 degrees.
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james1947

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Re: Results from my Xiaflex injections
« Reply #52 on: September 20, 2014, 05:33:11 PM »

RoyHobbs
Thanks for the update.
Wish you continue improvements from the additional shots.

ThisWontWork
I understand your frustration, but all the reports we are getting are positive. I think the problem in your case was the doctor and not the Xiaflex.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

pointedly

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Re: Results from my Xiaflex injections
« Reply #53 on: September 21, 2014, 10:12:44 PM »

@Mending,

Thanks for your posts and your progress reports.  I am seeing my urologist on Friday and he may initiate a Xiaflex regimen.  I read in one of your previous posts that you were using a vacuum device as part of your own modeling exercises.  Are you still doing that?  If anyone else would like to jump in regarding experiences with xiaflex and vacuum devices, I would be interested to hear.  I have been using one for about a year and have noticed some improvement with bend and with pain.  My curvature and pain increased after using a traction device years ago, but it's impossible to tell if the device was the cause or if it was a progression of Peyronies Disease since I had no "before and after" imaging done...

Thanks,
Pointedly
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #54 on: September 21, 2014, 10:57:32 PM »

Pointedly,

Good luck with your appointment and with the Xiaflex, if you go that route. Yes, in fact I just finished a VED therapy session. If it helps with curvature, that will be a side benefit for me, but I am hoping to reduce the hour glass and hinge effect.

It's too early to say if it's causing any improvement, because I've only been using it consistently for about a week or so. But I do notice that over the course of each session, after repeated inflation/deflation cycles, the indentations on the sides do flatten out and become less pronounced. My hope is that this is having a small, gradual effect by stretching out the circumference of the plaque - while at the same time the Xiaflex has weakened the collagen.

It makes sense in theory; let's see what happens in practice. The more of us that try it (VED while on Xiaflex), the better we will be able to understand the outcomes.

One note of caution: When I asked my doctor if he recommended using vacuum therapy during Xiaflex injections, he paused and said, "The question is - will the VED create forces that could result in penile fracture? And the answer is 'we don't know'." He followed that up by suggesting that I not try VED at this time - out of concern for a risk of fracture. Being aware of that risk, I am doing it anyway.

I'm certain that the doctor, being conservative, wants to minimize the risk to me (and also the risk of a bad outcome on his practice). But I am more motivated by the promise of improving my hour glass. If this is my guinea pig moment, for my own sake and for other Peyronie's Disease sufferers out there, so be it.

Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #55 on: September 22, 2014, 02:14:54 AM »

Quote from Mending
Quote
...my doctor...said, "The question is - will the VED create forces that could result in penile fracture? And the answer is 'we don't know'."
I don't know how the VED can make a fracture. To have a fracture you have to bend an erected penis to the point it will fracture. The VED will make it strait and not bent in the cylinder. Maybe if it will be a very strong over-pump, will stretch the tissues to the point of rupture.
Just my opinion

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Old Man

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Re: Results from my Xiaflex injections
« Reply #56 on: September 22, 2014, 09:24:34 AM »

Caution to all VED users:

There have been many questions asked by doctors (those who are inexperienced with Peyronies Disease therapy) about damage being caused by the therapy. I am well aware of the dangers they fear as I experienced some damage when I first started VED therapy way back in 1995 after my radical prostatectomy surgery.

VED therapy is one where less vacuum pressure with many repetitions within certain time limits for each pump up session is much better than more pressure. So, bottom line, realize that further damage can and will be done if the VED therapy is abused to the point of extreme over pumping the pressure.

Also, remember that it takes time for ones erectile tissue to become ''used to'' the added pressure and increased blood flow when first starting up the VED therapy. So, during the first few weeks of doing VED therapy, just use extreme caution and be careful with the vacuum pressure. Also, it takes extended periods of time to see any really good results, so patience is of the essence when using the therapy.

Old Man

Edit: I realize that the above post is somewhat out or order on the Xiaflex topic, but the warning needs to be given as the subject of VED therapy came up during prior posts here.
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pointedly

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Re: Results from my Xiaflex injections
« Reply #57 on: September 27, 2014, 03:21:30 PM »

Mending the Bend,

Thanks for your thoughtful posts and your insights.

I had my first Xiaflex injection yesterday and will receive my 2nd on Monday.  I have some observations that I think are VERY IMPORTANT to note about this disease.

FOR STARTERS
1. If you have Peyronies Disease or think you might, get an ultrasound with imaging and blood flow calculations immediately!  I went through 3-4 years of treatment and got my first ultrasound yesterday.  I finally got to see what has been causing my curvature, but it's more important for the urologist to know where to pinpoint treatments/injections.
2.  Get baseline measurements when diagnosed!  I finally found out that I have a 65 degree curve:  This is after 3 rounds x 12 injections of Verapamil, traction and VED therapy.  I know I have had some improvement over the years, and my hourglass is barely perceptible, but I have no baseline to compare the benefits of the previous therapies.

XIAFLEX INJECTIONS
1.  If you have had Verapimil injections, Xiaflex (so far) is a walk in the park.  It's only one injection that lasts 2-4 seconds.  I had anticipated not being able to work yesterday afternoon, but felt so good that I ran my skidsteer and poured concrete this morning - pleasant surprise!  It has turned the color of a beautiful purple sunset, but it feels like it has had a mild sunburn.  By contrast, I took ibuprofen and sometimes, oxycontin after my Verapimil, along with a bag of ice.
2.  I was instructed to stretch out my penis 3 times a day for 30 seconds each time.  I was demonstrated on how to get a decent pull without pain.  The doc also said that gentle VED would be OK, but not to use the base constrictors that are used to trap blood and maintain erection.  I am trying that tonight.
3.  I slept very well last night, so I am unsure if I had erections during sleep.  I did wake up with morning wood, so I bent gently "against the grain" as instructed.

OTHER NOTABLES
1.  My bloodflow into my penis, as tested during the ultrasound, showed that I was at a measurement of 97, when a minimum of 25 is considered adequate.  My bloodflow out was -9.5, when anything less than 7 is adequate.  I am 54, so I attribute that to exercises/workouts that are challenging and the natural supplements that I take daily.  I take 6g of arginine (split into 3 doses) at 20 minute intervals an hour before I work out.  I also take 2g at night.  I take 1.5 liquid carnitine 1st thing in the morning and the same amount before bed.  I also take 100mg of Ubiquinol before bed.
2.  After reading others' posts on this forum, I feel very fortunate that my plaques are not calcified.  This may be sheer luck, but it may very well be the Pentox prescription, the supplements listed above, the VED therapy I do at home, or a combination of the above.  I can't control luck, but the other things I do are not harmful and may help...
3.  The most painful part of yesterday's tests and injections was the erection reducer after the ultrasound.  The nurse had to bend me as if straightening my erection while administering the injection.  I had the option of waiting it out for a couple of hours or having them make it go away by injection.  Since my skidsteer was calling my name and the days are getting shorter, I took the "quick fix".
4.  If you have baggy shorts and a long shirt, wear them for any procedure where an erection will be induced!!!  When I had to cross the hall from the procedure room to the urologists office, I was greatly relieved that no one else was in sight...

I will try to follow up after my 2nd injection on Monday.  I understand the protocol to be consecutive days of Xiaflex, but it is a 2 hour drive to the uro's office so I have no concern over the 2 day interruption.

Pointedly



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pointedly

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Re: Results from my Xiaflex injections
« Reply #58 on: September 29, 2014, 10:14:25 PM »

2nd injection today!  Hardly any pain from the injection itself, but a little more dull pain in the area, in general.  My doc informed that the studies/clinical trials showed no difference of results in getting injections on consecutive days or waiting a day or two.  I believe he said that the protocol calls for the 2nd injection within 3 days of the 1st injection.  It may be helpful to wait for the 2nd in the series for those who have a tendency to swell...

When I asked if new measurements would be taken, he left that ball in my court.  He would be happy to do it, but would rely more on my own perception of curve reduction.  If I don't get dramatic results after my next session in two weeks, I would consider to try and measure the benefit.
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hope4all

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Re: Results from my Xiaflex injections
« Reply #59 on: September 30, 2014, 01:15:15 AM »

Thanks Pointedly for your detailed account and I wish you a great outcome!  Keep us informed.  I hear you on the Verapamil shots, pure torture. After my experience with Verapamil, Xiaflex will be a breeze. 

Hope4All
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UrsusMinor

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Re: Results from my Xiaflex injections
« Reply #60 on: September 30, 2014, 05:58:49 PM »

If you have baggy shorts and a long shirt, wear them for any procedure where an erection will be induced!!!  When I had to cross the hall from the procedure room to the urologists office, I was greatly relieved that no one else was in sight...

Unless there is someone in the hall and you want to make it clear you are happy to see them.
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Knight

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Re: Results from my Xiaflex injections
« Reply #61 on: October 01, 2014, 08:10:12 PM »

Not to get off topic but when I was injected to induced an erection for my ultra sound they asked me if I wanted an injection to get rid of the erection after the procedure. Being a pansy and deathly afraid of needles I politely declined and said I would wait it out. 3 to 4 hours later and 100 miles away from the urologist's office I would have given anything to have that last shot. That was a rough one! It sounds funny but it actually became very painful before it was over.

Congratulations on all the success stories and thanks for the hope! You guys are brave pioneers in my opinion and I hope to join the Xiaflex club soon!
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pointedly

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Re: Results from my Xiaflex injections
« Reply #62 on: October 02, 2014, 12:06:20 AM »

@Knight - Two hours +/- after getting the erection inducing shot, I was starting to get some pronounced pain. Just a guess, but perhaps when those with Peyronies Disease get an erection and pain starts occurring, the body senses that and shuts the blood flow to the penis down a little to reduce the pain?  When one is injected, the body may be unable to respond and protect from pain?

UPDATE:  After my 2nd Xiaflex injection on Monday, I have a little more bruising and some swelling just below the glans.  I think the skin is thinner there and may be pushed out easier by the swelling in the shaft.  I couldn't have run on Tuesday (but did lift weights) and felt slightly more uncomfortable throughout the evening as well - more so than on Friday after my 1st injection.  I ran 2 miles this morning (my usual amount) at a good pace and felt nothing irregular in the swimsuit area.

I have been stretching as directed by the uro and tonight I used the VED instead of the extender that I have.  I used the extender a few years ago and I am unsure if the extender helped or actually caused more damage.  I have an Augustus model VED and I used it without any of the inserts.  I added a twist to the session by using Nexcare tape on my penis before I inserted it.  My reasoning:  I have been instructed to bend against the grain by the uro and if at any point I develop a spontaneous erection, I have been told to try and straighten it out.

With that in mind, given that VED devices induce erection, I used a 3" piece of the tape by first attaching to the glans, bending that down approximately 10 degrees (I have an upward curve) and then attaching the tape to the underside of the shaft.  If I get an erection while vacuuming, I can't very well get at it to bend against the grain when it's in the tube.  The tape, therefore, serves the function of my hand by bending against the grain as it is straightened/erect.

With advice that I received from Old Man, I used hot packs prior to the vacuuming to "warm up the muscles".  After the pumping session, I took a long, hot shower and did the last of my 30 second pulls and also more backwards bending.  As I sit here typing, it's a little more sore than before I started the vacuuming, but not terribly so.

Pointedly
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #63 on: October 14, 2014, 01:50:40 PM »

Mid-Point Curvature Assessment

Hi all,

Today was the midpoint of my Xiaflex treatment regimen (six weeks after round two, start round three tomorrow), and my doctor performed an ultrasound and curvature assessment. I'm reporting the results because it is the official doctor's measurements, not mine, and it's good to know that the improvements I've recorded have been corroborated. Dr. Mulhall is also doing a clinical study of his Xiaflex patients, recording the curvatures during treatment. These are my results so far:

Left curvature
Initial: 39 degrees
Six weeks after round 2 (4 injections): 7 degrees (82% improvement)

Dorsal curvature
Initial: 40 degrees
Six weeks after round 2 (4 injections): 25 degrees (37% improvement)

Needless to say, both the doctor and I are very pleased with the curvature improvements. He said that if I felt satisfied with the results I could choose to stop now. However, I still have hour glassing and stability issues. So we're moving ahead with a new injection protocol starting tomorrow. He will be injecting specifically to address the circumferential aspect of the plaque (which causes hour glassing), in a downward angle. Previously, he had been injecting laterally and perpendicular to the shaft, to address curvature.

One more thing to note, for those of you currently receiving Xiaflex shots. Dr. Mulhall's procedure varies from the official prescribing protocol in that he waits 2 weeks between initial injections. He claims that some doctors who are doing the 2nd shot after only 2 days are reporting more difficulty palpating the plaque and getting the injection in the right place. This is due to inflammation, which is present after 2 days but not after 2 weeks.

This makes sense to me, and it could be that going in for a 2nd shot while you are inflamed could increase the possibility of a less-than-ideal injection. Since we only get 8 bullets, we want every one to count. Just a thought, if some of you want to bring this up to your docs. I don't think there is any down side to waiting 2 weeks between initial injections.

Mending the Bend
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Knight

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Re: Results from my Xiaflex injections
« Reply #64 on: October 15, 2014, 09:16:05 PM »

Great news guys! I'm really happy for all of you! It is also exciting to read that Pointedly is able to remain so physically active through the procedure. That's very encouraging!

I will join the club with injection #1 on October 30th and injection #2 on October 31st. Happy Halloween! They talked me out of jumping right to surgery to give this a try first.

I'm ready!
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edzo67

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Re: Results from my Xiaflex injections
« Reply #65 on: October 16, 2014, 03:25:15 AM »

Has anybody had any positive results in recovering lost length during their Xiaflex treatments? Thanks guys
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Litani

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Re: Results from my Xiaflex injections
« Reply #66 on: October 17, 2014, 10:27:55 AM »

Has anyone had good results with calcified plaque?

In the trial they excluded calcified plaques.
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edzo67

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Re: Results from my Xiaflex injections
« Reply #67 on: October 18, 2014, 04:48:14 AM »

I've begun the process of preparing for possible Xiaflex treatments. It takes a few weeks for the treatments to be cleared with the insurance companies. I say possible because im nervous. Any positive feedback from those who have had the injections would be greatly appreciated. Im anxious to stop the steady progression of my peyronies over the last 2 years. Although I would love nothing more to regain my lost length and girth? It is more important that I stop any further loss. I know I should be willing to do what ever it takes, but im scared of doing any more damage, not to mention I absolutely cant stand even the thought of having needles jabbed in my junk. lol I am so beyond depressed at my situation. Its killing me and affecting my marriage. when I look at myself naked? I wonder whos parts those are.....They're certainly not mine
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edzo67

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Re: Results from my Xiaflex injections
« Reply #68 on: October 18, 2014, 04:58:48 AM »

Sorry if this is the wrong thread to post, but in talking with my Uro yesterday about Xiaflex? He said that so far in his experience that the Xiaflex treatments have turned out better than they had hoped for, to this point. He was involved with the original trials. Over time he has switched up technique and the treatment is still evolving in that area. He is probably one of the most experienced in administering the injections and to date hasn't had any negative outcomes or fractures. Some people respond better than others, but there is always some improvement. Like I said in my other post. Im not so much worried about becoming totally straight again. I just want to stop any advancement of curvature and size loss.
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Will28

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Re: Results from my Xiaflex injections
« Reply #69 on: October 20, 2014, 08:34:01 PM »

I didn't know which thread to ask on but anyway...  after 6 rounds of Verapamil I am now going to try Xiaflex.  My Dr tells me that there are a couple of visits within a week for the Xiaflex injections and then stretching and such on my own... then in another 4 weeks repeat. 

He also told me I will be induced with an erection drug, but cannot find anywhere on here if the Xiaflex is injected when erect or not?  if not why do I need to have an erection?   Also, after reading all of these posts it would seem the modeling (I guess it's called) is also done by the Dr....  so I am real confused now as I was told that is to be done by me.  Please anyone chime on in.....   ugghh,  what a year this has been...so grateful for this site!!!

Thanks,
Will
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LWillisjr

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Re: Results from my Xiaflex injections
« Reply #70 on: October 20, 2014, 08:44:51 PM »

An erection is not required for the Xiaflex injections. Is this the same doctor who did the VI's? If not, then maybe he wants to do an ultrasound as a baseline before starting the Xiaflex. He should show you the modeling the first time but I think will expect you to repeat this at home for a period of time.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #71 on: October 20, 2014, 11:34:34 PM »

Will28 -

The Xiaflex protocol calls for an injection to be induced before the start of round 1, in order to make baseline curvature measurements and perform an ultrasound. This is repeated at the end of the 2nd round, six weeks after the 4th injection.

You are NOT injected with Xiaflex while erect. You will either wait a few hours or go back the next day.

Your doctor may or may not do modeling in his office, but either way you will want to be doing it at home. The modeling is no big deal - stretch your flaccid penis for 30 seconds, relax, repeat, repeat again. You can also use the plaque as a fulcrum for your outstretched penis to bend away from your curve. If you get a spontaneous erection, gently try to straighten it. Nothing too rough.

More importantly, I think, use traction for at least an hour a day. You should hopefully see some very positive results rather quickly.

Good luck.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #72 on: October 21, 2014, 07:06:35 PM »

Results from my 5th Injection

I received my 5th Xiaflex injection last week. In a word: ouch. For some reason, this injection resulted in more pain and lots of bruising. A week later, and I'm still purple. I started doing traction on the second day and VED on the third day. That may have contributed to the increase in bruising, but I thought that stretching the plaque during the active Xiaflex stage might lead to better results.

The hour glass indentation has improved somehwat after this injection. I noticed a softening of the plaque at a section which felt almost like a knot earlier, right at the site of my indentation. This is where the doctor injected the Xiaflex, in a single dose at the point of my worst hour glassing. Erection stability is somewhat better, probably from the overall improved straightness of my erection. But there's definitely still a collaring/hour glassing about midway down the shaft, which is where my dorsal and lateral curves begin. However....

My lateral (left) curve has now been reduced to 5 degrees, from 39 degrees initially.
My dorsal curve has now been reduced to 22 degrees, from 40 degrees initially.

Left curvature progress:
Initial
- 39 degrees

1st Injection
- 27 degrees (after 1 week) - 31% improvement

2nd Injection
- 22 degrees (after 1 week) - 44% improvement
- 17 degrees (after 3 weeks) - 56% improvement

3rd Injection
- 14 degrees (after 1 week) - 64% improvement
- 11 degrees (after 3 weeks) - 72% improvement

4th Injection
- 8 degrees (after 1 week) - 79% improvement
- 7 degrees (after 5 weeks) - 82% improvement

5th Injection
- 5 degrees (after 1 week) - 87% improvement


Dorsal curvature progress:
Initial
- 40 degrees

3rd Injection
- 32 degrees (after 1 week) - 20% improvement

4th Injection
- 28 degrees (after 1 week) - 30% improvement

5th Injection
- 22 degrees (after 1 week) - 45% improvement


Three more injections to go, and we are continuing to focus primarily on the hour glassing. The problem is that there is no definitive protocol for injections to address hour glassing, only for curvature. And those are best guesses, anyway. Will keep everyone posted.

Mending the Bend
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Will28

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Re: Results from my Xiaflex injections
« Reply #73 on: October 21, 2014, 08:00:41 PM »

Today I called the Xiaflex Mfg and spoke to a person who knew how the drug is administered, this person let me know that the injection is done while erect.  Now I'm even more confused...


Will28 -

The Xiaflex protocol calls for an injection to be induced before the start of round 1, in order to make baseline curvature measurements and perform an ultrasound. This is repeated at the end of the 2nd round, six weeks after the 4th injection.

You are NOT injected with Xiaflex while erect. You will either wait a few hours or go back the next day.

Your doctor may or may not do modeling in his office, but either way you will want to be doing it at home. The modeling is no big deal - stretch your flaccid penis for 30 seconds, relax, repeat, repeat again. You can also use the plaque as a fulcrum for your outstretched penis to bend away from your curve. If you get a spontaneous erection, gently try to straighten it. Nothing too rough.

More importantly, I think, use traction for at least an hour a day. You should hopefully see some very positive results rather quickly.

Good luck.
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edzo67

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Re: Results from my Xiaflex injections
« Reply #74 on: October 22, 2014, 04:44:41 AM »

Great News Mend!  any improvement for length or girth?
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #75 on: October 22, 2014, 06:24:06 AM »

edzo67 -

Thanks! Luckily my length was not affected much by Peyronie's (so far), other than obviously being shortened in total by the bend. With the curve reductions now, I'm sure I'm within 1 cm or less of pre-Peyronies Disease length.

As for girth, that was definitely diminished in the hour glass region. I see some visual improvement (decreased indentation size), but I'll get back to the forum with some quantitative measurements. I took measurements of it when it was at it's worst....just need to locate those and repeat it.

Mending the Bend
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Will28

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Re: Results from my Xiaflex injections
« Reply #76 on: October 22, 2014, 08:11:57 PM »

To all that have had Xiaflex injections......   Can you please let me know if the injections were/are done with an erection or without.  I am being told two different things and really want to hear from those who have already done it.   thanks to all!!
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mark62

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Re: Results from my Xiaflex injections
« Reply #77 on: October 23, 2014, 06:41:16 AM »

Will28-

The week before my Xiaflex injections, my urologist gave me the choice of measuring to find my maximum point of curvature or having him do it.  I didn't want to take any chances of making a mistake, so I asked him to do it.  He induced an erection and identified/noted the maximum point of curvature.  In my case, this was 2cm away from the glans.  On the day of the injections, he stretched the flaccid penis, measured 2cm down, palpated to verify the correct location, pinched the penis on (or very near) the plaque and administered the injection.

If you look in the Peyronie's Disease Resource Library, you can find the Xiaflex Dr Training Guide.  On both page 15 and 16 it is noted Xiaflex is injected in a flaccid state.  Link: xiaflex dr training guide - Peyronies Society Forums


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RoyHobbs

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Re: Results from my Xiaflex injections
« Reply #78 on: October 24, 2014, 01:38:45 AM »

My doctor believes it is dangerous to inject while erect.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #79 on: October 24, 2014, 12:01:42 PM »

Will28 -

I think we can put this question to rest. There have been no reports of patients being injected with Xiaflex while erect. There'd be no way for a doctor to reliably palpate the plaque to locate the injection site, which is a requirement for Xiaflex administration.

There must have been some confusion between the Xiaflex shots (no erection) and the curve assessment and ultrasound (erection required), for which an erection-stimulating drug injection is given.

Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #80 on: October 24, 2014, 04:46:44 PM »

An erection is needed to asses the asses the curve (as Mending mentioned) and to check venous leakages.
To find the plaques and asses they calcification an erection is not needed.

James
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Re: Results from my Xiaflex injections
« Reply #81 on: October 29, 2014, 10:29:53 AM »

Results from my 6th Injection

I received my 6th Xiaflex injection last week. In contrast to the prior injection, which caused me the most bruising of any injection so far, I had no bruising whatsoever from this shot. The injection itself was a little painful, but the soreness afterwards was localized to an area of about 1 square inch around the point of injection.

I started manual stretching, modeling and traction 24 hours after the injection. And it's almost as if I could feel the sore area in my plaque being stretched out. I waited 3 days to start gentle VED. I have been doing modeling every day, traction and VED about every other day.

The best news to report is that lateral instability has diminished noticeably, and dorsal instability has diminished somewhat. The hourglass indentation on the right side has flattened out a moderate amount, almost looking the same as the one on the left (it looked much worse 2 injections ago).

Curvature improvements continue, but my focus at this point is primarily on reducing dorsal instability and hour glassing. I have 5 weeks until my next injection, and I will continue regular modeling, traction and VED. I'm still taking the full regimen of supplements.

My lateral (left) curve has now been reduced to 3 degrees, from 39 degrees initially. I continue to be shocked at how much this has improved. I was expecting much less when I began treatment, and although there is still a visible left tilt to my erection, it has gone from being a deformity to having "character". Since I am now at 3 degrees, unless there is a worsening later on, I am going to consider my lateral curvature Mended.

My dorsal curve has now been reduced to 19 degrees, from 40 degrees initially.

Left curvature progress:
Initial
- 39 degrees

1st Injection
- 27 degrees (after 1 week) - 31% improvement

2nd Injection
- 22 degrees (after 1 week) - 44% improvement
- 17 degrees (after 3 weeks) - 56% improvement

3rd Injection
- 14 degrees (after 1 week) - 64% improvement
- 11 degrees (after 3 weeks) - 72% improvement

4th Injection
- 8 degrees (after 1 week) - 79% improvement
- 7 degrees (after 5 weeks) - 82% improvement

5th Injection
- 5 degrees (after 1 week) - 87% improvement

6th Injection
- 3 degrees (after 1 week) - 92% improvement (Mended)


Dorsal curvature progress:
Initial
- 40 degrees

3rd Injection
- 32 degrees (after 1 week) - 20% improvement

4th Injection
- 28 degrees (after 1 week) - 30% improvement

5th Injection
- 22 degrees (after 1 week) - 45% improvement

6th Injection
- 19 degrees (after 1 week) - 52% improvement


Two more injections to go. My plan for these last bullets is to go for "center mass" injections in the area of my hour glass, about 0.5 to 1.0 cm apart along the midline/septum. My thinking is that only by lengthening the top section of the plaque will dorsal curvature/instability improve an acceptable amount. I hope that giving two shots to break up the middle of the plaque mass, and performing traction and vigorous manual stretching (Thanks to NeoV for the idea) will provide the longitudinal mechanics to finally mend this bend - at least as much as possible.

Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #82 on: October 29, 2014, 04:45:54 PM »

Thanks for the detailed report Mending.
A good example that Xiaflex really helps.
I was very skeptical during the trial and after that it will really help.
I would like to ask, 6th injection you mean 3 sessions of 2 injections with 2 days apart?

James
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Re: Results from my Xiaflex injections
« Reply #83 on: October 29, 2014, 09:53:36 PM »

James -

My doctor waited 2 weeks (not 2 days) between injections in each round. Then a 6 week break between rounds.

Mending
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Re: Results from my Xiaflex injections
« Reply #84 on: October 29, 2014, 10:13:28 PM »

Clear Mending.
The difference is just the timing between the two injections.

James
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Re: Results from my Xiaflex injections
« Reply #85 on: December 08, 2014, 01:38:25 AM »

Results from my 7th Injection

I received my 7th Xiaflex injection last week. This was the most unusual injection in the series so far, inasmuch as I experienced zero pain, swelling or bruising. Zero. Every shot up until now I was able to tell exactly where the shot occurred because it was tender and swollen, at least for a few days. Within a few hours after this injection I had no idea where it had been given. Strange. Honestly, I miss the *it's working* soreness.

In any case, I am continuing to see gradual improvements in deformity and rigidity. My lateral (left) curve is 3 degrees or less, and this bend I am considering "mended". My dorsal curve has now been reduced to 16 degrees. My mid-shaft plaque is still present and produces mild-to-moderate hour glassing. But instability has decreased markedly along with the dorsal curve. If I had a choice, I'd take a rigid erection with a "dip" in it (no need for ribbed condoms!) over a uniform erection with instability.

For those following my progress...

Left curvature:
Initial
- 39 degrees

1st Injection
- 27 degrees (after 1 week) - 31% improvement

2nd Injection
- 22 degrees (after 1 week) - 44% improvement
- 17 degrees (after 3 weeks) - 56% improvement

3rd Injection
- 14 degrees (after 1 week) - 64% improvement
- 11 degrees (after 3 weeks) - 72% improvement

4th Injection
- 8 degrees (after 1 week) - 79% improvement
- 7 degrees (after 5 weeks) - 82% improvement

5th Injection
- 5 degrees (after 1 week) - 87% improvement

6th Injection
- 3 degrees (after 1 week) - 92% improvement (Mended)

7th Injection
- 3 degrees (after 1 week) - 92% improvement (Mended)


Dorsal curvature:
Initial
- 40 degrees

3rd Injection
- 32 degrees (after 1 week) - 20% improvement

4th Injection
- 28 degrees (after 1 week) - 30% improvement

5th Injection
- 22 degrees (after 1 week) - 45% improvement

6th Injection
- 19 degrees (after 1 week) - 52% improvement

7th Injection
- 16 degrees (after 1 week) - 60% improvement


I've also increased consumption of anti-inflammatory foods and have continued adding to my supplement regimen. I want to create the best possible physiological environment during this 'healing' phase, reducing inflammation and trying to make sure the building blocks for wound repair are circulating freely in my blood. I'm throwing everything at this:

Ubiquinol, Acetyl L-Carnitine, Alpha Lipoic Acid, Arginine/Citrulline, Pycnogenol, Grape Seed Extract, Vitamins C, D and E, and organic pure tart cherry juice (great stuff).

It's my belief that Xiaflex when combined with the techniques and supplements advised by many on this forum can lead to improvements not possible by either method alone. I was told by Dr. Mulhall that mine may be the best results he has seen so far among his Xiaflex patients. It may be a coincidence, but I think not. I owe a debt of gratitude to the collected wisdom of this board.

One more injection to go. This is going to be a left/right split, attacking the hour glass deformity from both sides. I'll follow up with plenty of manual stretching, traction and VED. And I'll follow up with the results.

Mending the Bend
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RoyHobbs

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Re: Results from my Xiaflex injections
« Reply #86 on: December 13, 2014, 05:04:11 PM »

Hi guys-

A busy couple of months has kept me from a proper update of my xiaflex experience so here you go.

First off, I have calcification, but the plaque that is calcified is not in the area being treated. My plaque runs from the glans almost to the base of my penis. The calcified portion is near the base, but is not causing the bend.

Initial curvature: 79 degrees (upward dorsal)

Initial Flaccid measurement when stretched: 10 cm

RESULTS AFTER FIRST ROUND

I experienced heavy bruising and swelling, soreness, and a blood blister. All gone in about a week.

Curvature 6 weeks after round one: 54 degrees (32% reduction)

RESULTS AFTER SECOND ROUND

Dr. Gelbard chose to wrap my penis this time and bruising wasn't as bad. But I still experienced some swelling and purple discoloration. I also suffered a small hematoma about the size of a dime. It developed 6 days after the 2nd injection and it was located right on top of my calcified plaque. Needless to say I freaked out and returned to the doctor. But an ultrasound confirmed that it was a hematoma. He guessed right away because the skin was raised, but I wanted to be sure it wasn't a new plaque. The Dr. said it would go away in a few weeks and it did. It's a listed side effect and after the initial fear it wasn't that bad to deal with. My how far I've come. Four years ago a hematoma on my penis would have sent me into the madhouse.

Curvature 6 weeks after round two: 45 degrees (17% reduction from round one, 43% overall)

RESULTS AFTER THIRD ROUND

I experienced no bruising or swelling whatsoever after round three. Also, I started modeling the same night as the first injection. Dr. Gelbard said medical thinking is evolving as more patients undergo xiaflex treatments. It appears that maximum effect occurs in the first 36 hours after injection. However, the plaque continues to stretch for weeks after which is why the daily stretching (and traction) continue to aid in reducing the curvature.

This past week I went in for my pre-injection measurements for round 4. Besides the first round, where I did the measurements the same day as the first injection, I've been going in two days before the new cycle starts and receiving an injection causing an erection so that curvature can be measured. I then receive another injection to kill the erection. However because I had a root canal on Tues and had a ton of ibuprofen in my system, Dr. Gelbard suggested we delay this final round. Ibuprofen can affect the platelets in my blood, and because I experienced a blood blister and a hematoma in the past the possibility of a massive hematoma loomed. So I agreed and I will now undergo round four in January. The Dr. added that additional stretching and traction will only aid in reducing the curvature.

And so I have no curvature update. From the looks of things the reduction after this last round was minimal. But if I end up with a 50% reduction after it's all said and done I can't help but feel happy about my experience with xiaflex. And I'm almost there.

One measurement the doctor did take was stretched flaccid length.

Initial: 10 cm

Now: 11.5 cm

I've gained 1.5 cm (1/2 in) in length back!

-Roy
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james1947

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Re: Results from my Xiaflex injections
« Reply #87 on: December 13, 2014, 05:10:46 PM »

Roy

Encouraging to read your post and will help others knowing what to expect.
From reading other posts also, it seems to me like if no bruising's/swellings no curve reduction.
Maybe no pain no gain?

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
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

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Re: Results from my Xiaflex injections
« Reply #88 on: December 13, 2014, 05:58:03 PM »

I can't say that for certain until I get accurate measurements. The doc told me that some men bruise while others don't but it doesn't seem to affect results one way or the other.
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Colorado

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Re: Results from my Xiaflex injections
« Reply #89 on: December 26, 2014, 12:05:45 PM »

My results:
Pre-treatment, 85 degree upward curvature.
Post-treatment (4 rounds of 2 injections), 30 degree upward curvature.
Erectile quality has increased significantly.  Prior to treatment, I was unable to engage in intercourse due to poor erectile quality.  Post-treatment, WAY better.

My doc is submitting to Cigna for authorization of another round of treatment.  He reports good support on this from Cigna with other patients.  I'm hoping to continue to improve erectile quality and MAYBE get some lost length back.

Xiaflex and the great staff at The Urology Center of Colorado have had a major positive impact on my life.

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james1947

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Re: Results from my Xiaflex injections
« Reply #90 on: December 26, 2014, 05:05:14 PM »

Colorado

Thanks for the report.
Amazing reduction (-55 degree) and will be more I suppose after the 5th round, wish you will get approved.
Also the improvement in Erectile Dysfunction is significant as you say.
What about length/girth? Do you gain some? Do you lost length/girth to the Peyronies?

James
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Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #91 on: May 14, 2015, 01:31:42 PM »

Results from my 8th Injection

It's been several months since my 8th and last Xiaflex injection. I wanted to give it some time before reporting to the group. My lateral and dorsal curves have been greatly reduced, from roughly 40/40 degrees left/dorsal, to about 10/10 degrees left/dorsal - which is a 75% improvement. Significantly, my erection hinging and instability have also improved markedly. I'd characterize it as having gone from "severe" to "mild". Hourglassing has also been noticeably reduced, from "moderate+" to "mild".

I had earlier estimated my lateral (left) curvature as having been reduced to about 3 degrees (margin of error +/- 3 degrees). It's possible that it has stabilized and/or regressed a small amount, or that the doctor measures differently than I do, but he has it at 10 degrees. We agree on the dorsal measurement of 10 degrees. Both curves have seemed stable for the past few months.

I also want to add a qualitative description of what I experienced during the Xiaflex treatments, that my plaque seemed to be pliable or "in flux" during the weeks after the injections. I improved at least a small or moderate amount after every shot. (The first shot gave me a major improvement) Since I've stopped injections, the plaque and my curve now feels as if it has stabilized again - hardened, if you will. I don't suspect that I'll see any further improvement without the Xiaflex softening up the plaque. But, I've also been told (for what it's worth) that there is only about a 1% chance of my curve getting worse again. I hope that's right.


Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #92 on: May 14, 2015, 06:12:52 PM »

Thanks for the report Mending the Bend and for posting on the forum experience.
On the forum experience topic we have just success stories  :)
Wish you continue improving and have a pleasant sexual life :)

James
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bummedout

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Re: Results from my Xiaflex injections
« Reply #93 on: May 14, 2015, 11:51:39 PM »

So I guess you'd recommend Mulhull for this Mending.
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Re: Results from my Xiaflex injections
« Reply #94 on: May 15, 2015, 11:23:16 AM »

Some terrific results here.
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hope4all

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Re: Results from my Xiaflex injections
« Reply #95 on: May 16, 2015, 01:37:43 AM »

Hey Mending, that is great to hear. I'm 5 weeks out from my 3rd cycle and agree with your assessment that the plaque does start to harden back up after a few weeks. I also am experiencing improved "performance" on my hinging issue. As the curve has reduced and my girth has returned the hinging is not as much an issue. I no longer have that constricted looking band around my shaft just under the glans that was making intercourse uncomfortable and somewhat dangerous for re-injury. 

I'm very happy for you!
hope4all
 
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #96 on: May 19, 2015, 10:42:58 AM »

So I guess you'd recommend Mulhull for this Mending.

If you are looking for a NYC-area doctor to administer Xiaflex injections, yes. You'd be in very capable hands.

I think he's had close to 100 Xiaflex patients so far. Be aware that he takes a conservative approach. He waits 1-2 weeks between initial injections, not 1-3 days as some other doctors do. (I think his reasoning is sound, though - he waits for the swelling to subside). He recommends traction, but he's ambivalent about VED and just cautions you to be careful if you use it. He won't prescribe pentox or tell you to take supplements. But he will prescribe Viagra/Cialis if you have Erectile Dysfunction issues.

Good luck.
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Re: Results from my Xiaflex injections
« Reply #97 on: May 19, 2015, 11:18:32 AM »

I am really heartened by your success, Mending.  Having been tuned-into Peyronie's treatment now for about 14 years, yours is both the most well-documented and successful treatment experience I can recall.  While Xiaflex is probably not the "miracle cure" we've all hoped for for so long, it certainly appears to be a legitimate and major step forward in the fight against this disease. Congratulations on your success!

Nemo
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Re: Results from my Xiaflex injections
« Reply #98 on: May 19, 2015, 04:57:37 PM »

Dr. Mulhall and his team are certainly recommendable. I made the long trip and the -unnecessary lengthy waiting process- because I had to be in the Office, basically to pay the advance payment, 8 days before Dr Mulhall would be able to see me (arranged two months in advance). This was a greater cost then the consultations, since the Hotel and maintenance is so very high in NYC. But in the Doctors opinion, a ventral plaque, together with a dorsal plaque, right on the root of the penis (very close to the pubis), is not recommended for Xiaflex, because of the urethra running so close to the ventral part and might get obstructed due to the inflammatory process after the Xiaflex shots. Probably it was more the fact that I need to travel 5500 mails from Argentina to NYC and this four times to complete the protocol of 4 times two shots.
As intercourse is possible in spite of the two plaques ( somehow they compensate each other a bit), I am left with traction.
Once Xiaflex gets available in Argentina, and Doctors can be trained in giving the shots, I might add this treatment, that seams very good from the two detailed observations in this exchange. Thank you all for the shared knowledge!
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Re: Results from my Xiaflex injections
« Reply #99 on: May 19, 2015, 08:30:18 PM »

Depending on frequency and quality of erections, you might consider VED as well.  It can be done inexpensively, and will add additional "stretching" to the plaques in a more controlled fashion than even a natural erection...VED protocol is more cyclic in nature that a sustained erection.  If you can actually have intercourse, you are better off than many of us.
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