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Mending the Bend

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Results from my Xiaflex injections
« on: July 05, 2014, 03:26:36 PM »

Results from my 1st Injection
Hi all,

Background Info:

I've been dealing with Peyronies Disease for about 15 months. I stabilized with curvature to the left of 35 degrees, but with full rigidity and no noticeable hour-glassing. After 6 injections of Verapamil, it got markedly worse. I had bi-planar curvature with 39 degrees to the left, 40 degrees upward, unstable erections and hour-glassing. Fortunately, my plaque is not calcified. If the Verapamil helped out in this regard (it's a calcium channel blocker), then I'm thankful only that it kept me eligible for collagenase injections.

The Results:

I had my first Xiaflex injection on June 18. The doctor noted that it was a "perfect injection", said he felt the needle going deeply into the plaque, heard a "cracking" sound (I heard nothing).

The injection itself was uncomfortable, but bearable even without being numbed. (They don't numb you for Xiaflex injections the way they do for Verapamil.)

I felt mild tenderness at the site of injection, but almost no discernible swelling (especially compared with Verapamil) and no bruising whatsoever. I was very thankful for the lack of pain and swelling because of stories and pictures I'd seen about potential side effects of Xiaflex. That's in part why I'm contributing my results.

I removed the bandage after three days, and I immediately noticed what seemed to be a softening of the plaque near the injection site. I was told to refrain from any modeling/stretching for a total of 7 days post-injection. I was advised to use a traction device for 30 mins, three times per day. But I find it very awkward and difficult to use, and finding the time is difficult, so I'm using it for about 30-60 minutes per session, usually only once a day.

After about 2 weeks, I decided to see if I could discern any change in curvature. Because that's what we all want to know, right? Softening plaque is great, but without curve reduction it means little.

After one injection of Xiaflex, my leftward curvature reduced to 27 degrees from 39 degrees (12 degree or 30% reduction). For me this is a huge improvement, better than I was expecting. I also noticed a slight improvement with indentation on the left side of my penis.

The doctor was targeting my leftward curvature with the injection, so I experienced negligible improvement in upward curvature and hour-glassing on the right side. Also, my erection is still unstable, which I suspect is due to the marked upward curvature.

I will report again after injection #2 in a few weeks. In the meanwhile, let me know if I can help with questions from fellow Xiaflex patients or those considering it.

Mending the Bend
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james1947

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Re: Results from my first Xiaflex injection
« Reply #1 on: July 05, 2014, 06:48:46 PM »

Thanks for the report Mending.
Interested to know how you are getting so accurate angles measurements.
Can you post a picture of the device you are using to measure angles?

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

Mending the Bend

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Re: Results from my first Xiaflex injection
« Reply #2 on: July 05, 2014, 07:21:18 PM »

Thanks for the report Mending.
Interested to know how you are getting so accurate angles measurements.
Can you post a picture of the device you are using to measure angles?

James
Hi James.

I'm using the following procedure to measure angles:

I first place my erect penis over a piece of paper on a table or flat surface. I then outline the erection with a pencil, making sure to keep the penis from moving relative to the paper once I begin. Since my curvature starts mid-shaft, it's easy to use the base section as a point of reference to measure the curve angle.

I then take the piece of paper with the outline of my erection and place it on a wall. I use a clinometer app (measures angles) on my iPhone, and I calibrate it to 0 degrees on the base line of my erection. I then rotate the phone until it aligns with the curvature, and I record the degree measurement. Violá.

I should also mention that my results have been corroborated by my doctor, to within 1 degree. I find that the Peyronie’s Disease Assessment Device (P.D.A.D.) isn't as precise as the method I'm using.

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james1947

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Re: Results from my first Xiaflex injection
« Reply #3 on: July 05, 2014, 07:25:01 PM »

Nice idea Mending :)
Thanks for the information.

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

Knight

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Re: Results from my first Xiaflex injection
« Reply #4 on: July 08, 2014, 10:10:48 PM »

Congrats on your success! Please keep the updates coming as you progress through the treatments!

Thank You!

Knight
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Re: Results from my first Xiaflex injection
« Reply #5 on: July 09, 2014, 07:58:09 AM »

Great news-congrats. Can you post the name of the doctor you are seeing or send me a PM?
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james1947

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Re: Results from my first Xiaflex injection
« Reply #6 on: July 09, 2014, 07:56:33 PM »

Quote
Can you post the name of the doctor you are seeing...
Others may benefit also with a good doctor :)

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

Mending the Bend

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Re: Results from my first Xiaflex injection
« Reply #7 on: July 09, 2014, 09:52:43 PM »

Sure thing. My doctor is well known on this forum, and as a leading Peyronies Disease specialist - Dr. Mulhall.
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james1947

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Re: Results from my first Xiaflex injection
« Reply #8 on: July 09, 2014, 10:15:47 PM »

The opinions on the forum regarding Dr. Mulhall are divided.

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

Mending the Bend

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Re: Results from my first Xiaflex injection
« Reply #9 on: July 10, 2014, 12:18:39 AM »

Opinions may be divided, yes. Each patient has the right to reach their own conclusions and see the doctor with whom they feel most comfortable. Dr. Mulhall is a no-nonsense kind of doctor, which may put off some people. But he's extremely knowledgeable and unquestionably one of the leading Peyronies Disease docs in the country. I'm confident that I'm in very capable hands and feel lucky to be in his care for my treatment. If my best friend got Peyronies Disease, I'd send him to Dr. Mulhall without question. But there are a handful of other very fine Peyronies Disease docs in the NYC area, fortunately.
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UrsusMinor

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Re: Results from my first Xiaflex injection
« Reply #10 on: July 10, 2014, 12:54:12 PM »

I first place my erect penis over a piece of paper on a table or flat surface. I then outline the erection with a pencil, making sure to keep the penis from moving relative to the paper once I begin. Since my curvature starts mid-shaft, it's easy to use the base section as a point of reference to measure the curve angle.

Hi Mending--That sounds like a sensible procedure. But my curve is entirely dorsal (upward). You said you measure both. But I can't figure out how to lay my erect penis on its side on a table! How do you go about outlining the upward curve?
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Mending the Bend

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Re: Results from my first Xiaflex injection
« Reply #11 on: July 10, 2014, 01:16:58 PM »

How do you go about outlining the upward curve?

Upward curves are definitely harder to measure accurately, for multiple reasons. You can try either of these two procedures:

1) Stand at an erection-height surface (table, etc) and hold a pad of paper vertically against the erect shaft while tracing its outline sideways. Not ideal, surely, but it will give you a rough estimate.

2) Take a photograph of your erect penis from the side, then do your angle measurements on the picture. An example of this procedure can be found in the resource library, here:

Instructions for Measuring Curvature - Peyronies Society Forums

I should note that determining the baseline (straight-out erection) angle can be challenging for dorsal curves, especially if you have an upward sloping curve during erection. In the example picture there, the author estimates the dorsal curve at 61 degrees, whereas my measurements put it closer to 50 degrees.

Good luck.

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UrsusMinor

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Re: Results from my first Xiaflex injection
« Reply #12 on: July 10, 2014, 02:08:47 PM »

Maybe I'll stand at an outward-thrusting corner and trace it on the wall?  ;D

Yes, I've been puzzled by the baseline for dorsal curves in photos, and most of the demo photos I see seem to me to attach very different values to the same curves!
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Mending the Bend

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Results from my 2nd Xiaflex injection
« Reply #13 on: July 25, 2014, 01:21:03 PM »

Results from my 2nd Injection
Hi all,

I received my 2nd Xiaflex injection last week. To briefly recap my situation: I started with a bi-planar bend of 39 degrees to the left and 40 degrees upward. This round of injections is targeting the leftward bend.

I had very minor bruising this time over an area about 1 sq cm, possibly from the doctor repositioning the needle before injecting the Xiaflex. Some tenderness at the site of injection and very minor swelling. With respect to side effects (pain, bruising, swelling), in my case I am finding them to be almost negligible. They're far, far better than the side effects of Verapamil injections, and also of many of the pictures I'd seen of 'botched' Xiaflex injections.

After improving from 39 degrees to 27 degrees after the first injection, my leftward curvature has decreased again to 22 degrees. That makes a total decrease of 17 degrees, or 44%, after two injections. I have to say that I'm very pleased so far. Unfortunately, erection stability is still greatly compromised. I suspect this is in part due to the upward curvature and hourglassing on the right side, which I hope to target with the last 4 of my 8 injections. So far, though, so good.

Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #14 on: July 25, 2014, 05:27:08 PM »

Mending-the-Bend

You are giving us detailed reports - thank you for that.
No thank you for opening new topic on every injection because can't follow your progress.
This is the reason that I merged your two topics.

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

Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #15 on: July 25, 2014, 10:10:40 PM »

James,

Ok; thanks for merging the topics. I'll continue posting here, and I'll highlight the injection reports for readers to make them easier to locate within the thread.

Mending the Bend
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yyy

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Re: Results from my Xiaflex injections
« Reply #16 on: August 02, 2014, 08:05:41 AM »

Mending,

I don't have a private insurance. Can you ask your dr how much a xiaflex injection would cost?
Thank you


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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #17 on: August 02, 2014, 11:48:51 AM »

yyy-

Medical billing in the USA is extremely complicated and opaque. And since most doctors are now "employees" of big institutions (hospitals), they have almost nothing to do with billing. But there is a bill from the doctor for his services, a bill from the medical facility (hospital in which your procedure is performed), and a bill for the drug prescription. When one has insurance, the costs are pre-negotiated and you end up paying what your insurance tells you to pay. I've exhausted my deductible this year, so I'm now paying only a copay. The doctor's initial bill is roughly $400, the facility bill is about the same - although for some reason the $400 facility bill is increased to $1900 (pre-negotiated between my insurer and the hospital....I suspect in a shady back-room deal). Fortunately, I'm only paying out of pocket about $150 total for these two costs.

Without insurance, the big ticket item is sure to be the Xiaflex itself. I think the cost is about US$28,000 for 8 injections. I'm not yet sure how this is being billed or paid via my insurance plan, but I'm hoping that they're picking it up as part of the doctor and facility coverage. I haven't yet received a separate bill for it, and I've had two injections.

If you're paying cash, be sure to get a very clear explanation of billing before you proceed. It's kind of like walking into a restaurant without prices on the menu, ordering a burger that you expect to cost about $10, eating it, and then getting a bill for $250.

Mending the Bend
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #18 on: August 02, 2014, 06:09:39 PM »

Whoa. I need to update my post from this morning, because I just retrieved the mail which included a bill for my Xiaflex injection. I was billed $6,349 for one round. Even with my insurance coverage, I'm liable for about $1200 of that amount. This stuff better work magic.
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UrsusMinor

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Re: Results from my Xiaflex injections
« Reply #19 on: August 02, 2014, 07:32:29 PM »

Well, you've had a 17 degree (44%) decrease in curvature, right?

I don't know if I'd call that magic, but I'd happily pay $1,200 for it. You only have one penis.*

(*Okay, I admit I'm making an assumption there.)
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RoyHobbs

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Re: Results from my Xiaflex injections
« Reply #20 on: August 02, 2014, 08:52:52 PM »

I paid 7062.00 just for the xiaflex. Just for one round.
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yyy

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Re: Results from my Xiaflex injections
« Reply #21 on: August 03, 2014, 08:15:28 AM »

Sh*t, 7k for one shot...will never be able to afford it  :-[
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UrsusMinor

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Re: Results from my Xiaflex injections
« Reply #22 on: August 05, 2014, 02:03:45 PM »

Roy, you're expecting some reimbursement, correct? (I think Mending is paying about 18% of the cost.)
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RoyHobbs

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Re: Results from my Xiaflex injections
« Reply #23 on: August 05, 2014, 04:03:25 PM »

I charged the amount. My insurance co said there would be reimbursement. I have a platinum ppo so I expect this to be the case. The problem is my insurance co. deals with a different drug delivery company than my doctor's office. So I have to front it.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #24 on: August 06, 2014, 02:30:53 PM »

2nd Injection Update with Further Improvements

It's been about 3 weeks from my 2nd injection and 2 weeks from my first progress report about it. I've now noticed additional improvements in left curvature which warrant this update. I'm being intentionally conservative in curvature measurements because I don't want to give anyone (including me) false impressions.

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

I'm thrilled with this progress, but I need to note that I still have a pronounced dorsal curve which causes bending/instability with erections. Nonetheless, I'm very hopeful that this can be addressed with further injections and alternative therapies (see below).

I also need to mention a few important things:

1) I started daily oral supplement therapy 3 weeks ago (ALC, Ubiquinol, Arginine). I can't say how much they may have contributed to the curve improvements, if at all, but I have definitely noticed almost-daily morning erections starting a few days after I started the pills, whereas before I rarely had them.

2) I've been doing the recommended manual stretching (3 x 30 seconds in the opposite direction of my lateral and dorsal curves, using a finger under the plaque as a fulcrum). I am also not shy about giving myself erections to perform the 'bending away from the curve' stretches suggested for Xiaflex patients.

3) I've been using a traction device daily for 30 - 60 mins. And I've ordered a VED which I'll start to incorporate next week.
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pointedly

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Re: Results from my Xiaflex injections
« Reply #25 on: August 10, 2014, 11:19:49 PM »

@Mending the bend - what type of vac device did you order?  I have an Augustus model that didn't come with any inserts.  I went to Ace Hardware and got a flourescent light tube protector that is just about my size.  I cut it to length so that it just fits inside the tube.

Also, you talked about going against the bend for stretching purposes.  I also use Nexcare First Aid Tape which is about an inch wide and very sticky.  I apply the tape to the tops side of my glans and run it down the underside with just a slight downward angle when I'm flaccid.  Without any inserts in my vac device, when I pump the vac the tape makes it bend against the grain like you described.  Be careful about taping any hair and when you remove the tape, don't start at the glans - go slowly and peel toward the head.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #26 on: August 11, 2014, 10:51:53 PM »

Pointedly -

I got the Augusta Vitality one tube model. Just arrived so haven't had a chance to use it yet, but I will follow the suggested protocol of Old Man and Angus, pinned to the top of the VED thread here:

Peyronies Disease THERAPY WITH THE VITALITY OTC ONE CYLINDER VED - Peyronies Society Forums
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Re: Results from my Xiaflex injections
« Reply #27 on: August 14, 2014, 02:47:05 AM »

MY XIAFLEX EXPERIENCE: 1ST ROUND OF INJECTIONS

Hi guys-

So after six months of insurance limbo (only to learn that I had to pay up front for the vials and get reimbursed later) I've finally completed my first round of injections. I had my modeling session yesterday, so it's too early to see any results. But I wanted to share the experience. The guys who shared before me really helped me to prepare for the treatment, both mentally and physically.

Let me first refresh you on my stats. 3 years + with peyronies. Diagnosed by a uro who sort of understood the disease. After exhausting options with that doctor I became a patient of Dr. Tom Lue's, well know on this board. In January, after a year of being treated by Dr. Lue and with xiaflex recently approved, he referred me to Dr. Martin Gelbard in Burbank, Ca. This was merely out of convenience as I live in Los Angeles. But it was a win win because Lue trusted Gelbard and Gelbard treated more patients in the trials than any other doctor.

Based on pictures, Dr. Gelbard measured my upward curve at 84 degrees. I lost a little size but in the three years since diagnosis I've regained some girth and length and my erections have gotten harder. Also, and I think a lot of guys will be interested in knowing this, I have calcified plaques. Dr. Lue was able to reduce the size with treatment, but I still have some. The only upside is that the calcification is in pieces not one solid mass. And so if injected correctly, the xiaflex needle will be able to break through the plaque.

So last Friday I went in for the first injection. I stopped taking cialis, pentox and all supplements except for vitamin k2 and coq10 7 days prior to the first injection. Dr. Gelbard gave me an injection to induce an erection. He left the room and I remained standing for about 15 minutes, time allowed for the erection to come about. Once erect, he took measurements and I have an 80 degree upward curve. So already the curve decreased by 4 degrees! Thanks, Xiaflex! He also took a measurement from the tip of my glans to where my bend is. He made a green dot to indicate the largest point of bend. He then gave me a shot of something (I forget the name) to get rid of the erection. They will not inject an erect penis.

After another 10-15 minutes to allow for the erection to come down, he gave me a shot of lidocaine in my penis to numb it. I was lying down at this point and after 10 more minutes to let the lidocaine kick in it was time for the xiaflex shot. I was told that because I have calcified plaques it may take a few tries to find a spot. Dr. Gelbard and an assistant stretched my penis and used the measurements from my erection to confirm that the green dot was at the site of the plaque, then injected the xiaflex and luckily the needle went right in. Again, the calcification was decreasing as of last October and I've been on pentox since Dec. 2012, so they may have continued to soften. I felt a little pressure from the xiaflex, but I was numb so it wasn't bad at all. The other injections stung a little, but even they weren't that bad.

Dr. Gelbard doesn't wrap up his patient's afterwards in bandages. He also doesn't recommend ice, he believes it can break up the enzyme. And I had plans to see a concert that night and he said it was fine to go out, even drink. Oh, and I asked about marijuana and he said it might even help with the pain. Some of us may differ on the pros and cons of these vices, but I'm fine with my choices. I just want to make sure I share my total experience.

The appointment took a long time, longer than expected. It was in the afternoon and so I had to go back to work. And while my erection went down for the injection, as soon as I stood up it came back. I had to deal with an erection for two hours at work. Luckily I had an untucked shirt and desk to sit at.

The post injection erection was by far the worst part and caused me the most discomfort. It was making me feel the pain in my penis after the lidocaine wore off. Surprisingly, the bruising that appeared first was from the injections giving and taking away the erection. But that puffiness subsided by night time. The main side effects I experienced were black and blue bruising along the shaft and testicles, ballooned foreskin (similar to when I used long hold times with VED) and a blood blister. The blood blister appeared a few hours after the injection and above the injection site. Some xiaflex must have seeped out of the injection site causing the blister.

Let me just say that while my penis looked pretty beat up it was not scary. It's exactly what I expected after reading other members' postings. The worst of the bruising and swelling came the next day on Saturday. But by Sunday it started going down. Someone here mentioned that their doctor said the swelling indicates the xiaflex is working. It might just be a theory but this is an aggressive and strong drug. I can believe that in its wake and as it works toward breaking down the plaque it leaves its mark. That's just my two cents.

On Monday, I had my second injection. Dr. Gelbard said the bruising and swelling was normal and the blood blister wasn't something to worry about. I only had the lidocaine to numb and the xiaflex shot this time. The lidocaine hurt a little more due to the swelling, but the xiaflex (after a ten minute wait) didn't hurt at all. In the process of injection Dr. Gelbard popped the blood blister.

The bruising and swelling after the second shot wasn't as bad. I didn't get any more blisters and if anything the soreness stayed at the same level Tuesday that it was on Monday prior to the injection. I will say the soreness can extend up into the base of the shaft and higher. The Dr. asked about it without me saying anything so he's obviously seen it before.

On Tuesday I had the modeling. The shot of lidocaine hurt the most that day out of the three sessions because the doctor really wanted to make sure I was numb. After reading the posts here I wanted to make sure I was numb as well. I didn't feel a thing. His technique was basically the stretching exercises. He stretches out the shaft, and then using a finger under my shaft as a fulcrum, he bends the penis down in the opposite direction of the curve. He did this three times, holding for 30 seconds each. He was aggressive but not dangerously so.

I am to do these stretches 3 times daily. I started after the modeling session. I was told not to do any until after modeling. I am to keep doing the stretches for six weeks, until my next round begins. And if I get an erection spontaneously I should try bending the curve straight, but not to the point of any pain and discomfort. And I should only do it once a day. Also, he recommended doing traction 1-2 hours a day if I can stand it. He recommended traction over VED because of my degree of curvature.

And that's it. I'm still a little sore, but able to do the stretches without any real pain. And each day the swelling continues to go down. I don't have any real fears of a penile fracture now having gone through this. As long as you don't have sex and don't masturbate you should be fine. It's not like xiaflex turns her penis into glass.

I'm hopeful for some real results but also know that I'm not likely to see much improvement until the 2nd or 3rd round.

My apologies for the long post. But I figure the more detail I can give the more helpful it will be to other guys. And the more posts written showing consistent experiences and methods being used, the more comfortable other guys might feel about doing this. I never imagined being okay with several needles being pushed into my dick. But it's not as bad as you think.

Roy





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james1947

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Re: Results from my Xiaflex injections
« Reply #28 on: August 14, 2014, 05:19:10 AM »

Roy

I wish you very good results from the Xiaflex treatment.
Don't apologize for the long post, I wish every one will post much details as possible that other forum members can take a decission based on the others experience.

Best wishes
James
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Re: Results from my Xiaflex injections
« Reply #29 on: August 14, 2014, 06:33:12 PM »

I agree with James. Your post was excellent Roy. Please keep the information coming and I hope the treatment is 100% successful!

Knight
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Litani

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Re: Results from my Xiaflex injections
« Reply #30 on: August 14, 2014, 09:31:38 PM »

I have a partially calcified plaque. Can you please describe your plaque calcification. How many sections of the plaque are calcified? How far apart are they?

I am a patient of Dr Galbard and I have a follow up visit next week.
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Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

jc961

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Re: Results from my Xiaflex injections
« Reply #31 on: August 15, 2014, 09:34:46 AM »

Thanks Roy for the detailed info. I am scheduled to start my injections the first week of next month. However I still do not get much comfort as a lot of you guys on here are going to some of the best doctors in the country for this condition. I am stuck with my doctor who fortunately has experience in Peyronies but unfortunately not with Xiaflex. I am not in a position to were I can travel out of town to see a better doctor. I think the closest one to me is about 9 to 10 hrs away at Vanderbilt.
I just hope I have the same good outcomes to report the rest of you are experiencing.
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RoyHobbs

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Re: Results from my Xiaflex injections
« Reply #32 on: August 15, 2014, 01:34:06 PM »

Hi Litani-

Think of calcified plaque like an arctic sheet of ice that has broken up. When they measure the plaque they measure it as one piece. But there are tiny open pockets within that one piece. I will add that most of the ultrasounds and measurements were done with Dr. Lue. Dr. Gelbard took an X-ray.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #33 on: August 25, 2014, 07:28:53 PM »

Results from my 3rd Injection
Hi all,

I received my 3rd Xiaflex injection last week. Because of significant improvements thus far in lateral curvature, I convinced my doctor to start targeting the hour glassing and dorsal curvature. The hour glassing has been creating erection instability, like a hinging effect. The base is rigid, the tip is rigid, but midway across the shaft there is bilateral indentation, a reduction in girth, and subsequent lack of rigidity. Think of a door hinge - not good.

The Xiaflex dosage was split in two, with one half-dose injected on each side at the point of my hour glassing. I experienced no bruising whatsoever, no swelling, and only enough pain at the sites of injection to tell me *it's working*.

I just completed curvature measurements, including my first one at assessing improvement in dorsal curvature.

My lateral (left) curvature has now been reduced to 14 degrees, from 39 degrees initially.
My dorsal curvature has now been reduced to 32 degrees, from 40 degrees initially. (Note that my first two injections didn't target dorsal curvature).

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

Dorsal curvature progress:
Initial
- 40 degrees

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

Hinging and hour glassing are still present, which is troubling, but I am encouraged by the reduction in dorsal curvature. One more injection coming up in a few weeks, then we'll do a curvature assessment and evaluate the strategy for the remaining 4 injections.

In the meanwhile, I am continuing daily oral supplements (ALC, Ubiquinol, Arginine), I'm eating well and exercising, daily manual stretching, traction of roughly 1 hour/day, and VED...but only about once every other day.

If anyone reading this has specific experience with an hour glass or "waisting" deformity that caused hinging instability, and it was resolved, either via Xiaflex injections or otherwise, please PM me or reply here. I'd like to do whatever I can to defeat this.

Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #34 on: August 26, 2014, 01:51:49 AM »

Mending

Thank you for the update.
Wish you continue to continue improving.

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

welshwales

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Re: Results from my Xiaflex injections
« Reply #35 on: August 26, 2014, 05:37:16 AM »

Great progress! I'll be following your treatment with interest as I have a similar hinge like effect. Thanks for sharing.
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #36 on: September 08, 2014, 08:06:25 PM »

Minor 3rd Injection Follow Up

It's been about 3 weeks since my 3rd injection and 2 weeks since my first progress report about it. I've had another 3 degree reduction in lateral curvature over the past 2 weeks, and I wanted to log it before I go for my next injection this week. I haven't been doing too much traction lately (crazy schedule), nor VED, but I've been consistent with the oral supplements.

I've had no noticeable further improvement in dorsal curvature or hourglassing, but those are both difficult to assess precisely.

My left curvature is now 11 degrees. Damn, it almost looks straight! If I didn't have the hourglass and stability problem, I'd probably be stopping after this next injection.

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 (!)

Mending the Bend
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james1947

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Re: Results from my Xiaflex injections
« Reply #37 on: September 09, 2014, 03:17:44 AM »

Mending

Your improvements are remarkable. Thank you for posting an please update again after your next injection.
VED may help with hour-glassing, it helped me.

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

edzo67

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Re: Results from my Xiaflex injections
« Reply #38 on: September 09, 2014, 03:52:58 AM »

Awesome!!! That's great news! Good luck!!
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Carbonlib

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Re: Results from my Xiaflex injections
« Reply #39 on: September 10, 2014, 07:56:49 AM »

going in for my first Xiaflex today and tomorrow.... I'll let you know.....

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james1947

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Re: Results from my Xiaflex injections
« Reply #40 on: September 10, 2014, 01:54:21 PM »

Good luck Carbonlib, wish you best results

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

yyy

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Re: Results from my Xiaflex injections
« Reply #41 on: September 13, 2014, 07:25:12 AM »

Mending,

Some questions for you.

If I'm right your doctor did not follow the official protocol which is: one injection, then modelling for the 2 following day and then, after 3 days, another injection.
For each cycle you simply received one injections and not two (with the second after 3 days)
You also had a bandage for 3 days


Can you confirm all that? thanks
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #42 on: September 13, 2014, 10:15:36 AM »

YYY,

I am still receiving two injections per cycle, but instead of a few days apart, they're two weeks apart. In my opinion, having more time between these two injections has been a help. There can be some residual pain, potential swelling and bruising (usually minor for me, but others have had more) after 1-2 days, and I've appreciated having longer time between the shots.

You're correct in that he does no modeling in the office. He advised me to do traction at home, but to wait one week post-injection. I usually start modeling and traction on my own, though, a few days after the injection.

He bandages me after each injection and advises it to stay on for 48-72 hours. I did that for the first two injections, but for the last two (one just the other day), I've removed the bandage after 24 hours. I'll give a full report of my fourth injection within a week or so, once I can assess its impact.

I hope that helps.
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yyy

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Re: Results from my Xiaflex injections
« Reply #43 on: September 14, 2014, 07:42:01 PM »

mending,

thanks for your reply, I really do appreciate it.

One more question: what about intercourses? are they forbidden for the entire cycle and healing (1 month)?
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #44 on: September 14, 2014, 09:38:07 PM »

The recommendation is to abstain from sex for the first 4 weeks of the 6 week period between rounds of injections. My doctor said he has had *zero* incidents of penile fracture in his Xiaflex patients so far. If that is your prime concern, it's probably best to wait the 4 weeks.
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Carbonlib

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Re: Results from my Xiaflex injections
« Reply #45 on: September 14, 2014, 10:09:07 PM »

had my first injections this past wed/thurs at UNC with Dr. Carson....


1. damn it hurts....  :( i don't remember the numbing OR the verapamill EVER hurting like this....  ugh....

2. I was instructed to hold my thumb on the injection spot for 15 min.....i still bruised, but no worse that with the V...

3. I was too sore to do the modeling.....when i went back on thurs (dreading the 2nd) he told me that he didn't want me to start the modling til saturday (which i did yesterday, altho still a bit sore)

4. the 2nd injection did not hurt nearly as much as the first...i don't know why.....i felt the prick and then hardly anything.....maybe my angst just took over and blocked it..

the modeling still hurt a bit cause the injection site still stung......bruising didn't seem to be any worse for wear due to the 2nd injection..

he told me no sex for 2 weeks, but mild masturbation was ok.....  lot's of conflicting info here.....i think i'll play it safe and lay off for 3 weeks...

i'll let y'all know if there's any change in the angle....

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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #46 on: September 16, 2014, 12:32:33 PM »

Results from my 4th Injection

Hi all,

I received my 4th Xiaflex injection last week. Brief highlights - curvature improvements continue, hour glass and instability start to get a little better. Please read on if you want more details...

Once again, the dosage was split into two injections for the left and right sides. But the injections were somewhat different this time for three reasons:

1) The doctor noted that he was getting the needle deeply into a large area of fibrous plaque at the site of my hour glassing, and he could tell because the needle was bending from the pressure of being inserted.

2) I experienced noticeably more pain for several days (even now, a week later, I can feel mild tenderness). I don't see this as a bad thing, actually. The pain has always been tolerable, and I feel good knowing that the collagenase is doing its business.

3) I've got some bruising this time around. It's over a relatively large area (4 cm x 2 cm), and it's mottled purplish in color. I assume the needle (or drug) burst some small capillaries. It appears to be all subcutaneous and is not alarming or bothersome to me. I had no swelling associated with the bruising.

My lateral (left) curvature has now been reduced to 8 degrees (sub-10...woo hoo!), from 39 degrees initially.
My dorsal curvature has now been reduced to 28 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


Dorsal curvature progress:
Initial
- 40 degrees

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

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


Some other important things: I am continuing with traction and have started VED again. I've noticed an interesting thing about using the VED, which encourages me to continue - I feel distinct radial forces (outward pressure) at the location of my hour glass deformity. My belief is that doing vacuum therapy while undergoing Xiaflex treatment may provide the right combination of plaque deterioration and outward stretching to address the localized reduction in girth (and hopefully improve rigidity and erection stability). I will post more in the VED forum later.

Also, I have noticed a lessening of the indentation on the right side of my shaft. The left side has already improved from the first 3 injections. I'm hoping this continues. Erection stability is difficult to quantify, but I *think* it's a little bit better now than it was several weeks ago. I've got another month until my next injections, and my plan is to continue traction, VED, oral supplements - and a positive attitude.

Mending the Bend
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UrsusMinor

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Re: Results from my Xiaflex injections
« Reply #47 on: September 16, 2014, 01:29:19 PM »

Mending, congrats on the great progress!  Your insight about the VED also makes a lot of sense, and is good to hear.
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yyy

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Re: Results from my Xiaflex injections
« Reply #48 on: September 16, 2014, 06:04:43 PM »

Mending and others,

Did you feel any change in penile rigidity, erection quality, hardness etc.

and What about penile length?

Thanks
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Mending the Bend

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Re: Results from my Xiaflex injections
« Reply #49 on: September 16, 2014, 08:31:32 PM »

yyy,

I'm pretty sure I lost a little length from having Peyronie's, maybe 1/2" or so. And girth at the hour glassing was reduced of course. Fortunately I started off with a little extra length and girth to spare. ;) I'd happily trade what I lost in length for straight and rigid.

Erectile Dysfunction was a slight problem initially, but I'm sure that was because of my frame of mind. Maintaining an erection became a battle because I didn't want to see what it looked like while hard (like a frozen banana, bent to the left).

I'm not sure if your question is regarding potential improvements in erection quality or length since starting Xiaflex, or overall. But if you mean since the injections, I'd have to say that my frame of mind has improved, which has a positive effect on erections.

Mending the Bend
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