Peyronies Society Forums

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

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

Quote from: james1947 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

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.

Nice idea Mending :)
Thanks for the information.

James

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

Thank You!

Knight

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

QuoteCan you post the name of the doctor you are seeing...

Others may benefit also with a good doctor :)

James

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

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

James

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.

Quote from: Mending-the-Bend on July 05, 2014, 07:21:18 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?

Quote from: UrsusMinor on July 10, 2014, 12:54:12 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 (https://www.peyroniesforum.net/index.php/topic,4760.msg54809.html#msg54809)

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.

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!

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

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

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

Mending,

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

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

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.

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.)

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

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

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

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.

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.

@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.

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 (https://www.peyroniesforum.net/index.php/topic,4944.0.html)

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

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

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

Knight

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.

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.

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.

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

Mending

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

James

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

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

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

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

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

Good luck Carbonlib, wish you best results

James

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

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.

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)?

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.

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....

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

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

Mending and others,

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

and What about penile length?

Thanks

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.

ED 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

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

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.

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

@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

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

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

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.

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

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.

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

Quote from: pointedly on September 27, 2014, 03:21:30 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.

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!

@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

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

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!

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

Has anyone had good results with calcified plaque?

In the trial they excluded calcified plaques.

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

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.

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

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.

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.

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

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...

Quote from: Mending-the-Bend 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.

Great News Mend!  any improvement for length or girth?

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

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!!

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 (https://www.peyroniesforum.net/index.php/topic,5310.0.html)

My doctor believes it is dangerous to inject while erect.

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

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

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

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

James -

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

Mending

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

James

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

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

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

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.

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.

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 ED is significant as you say.
What about length/girth? Do you gain some? Do you lost length/girth to the Peyronies?

James

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

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

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

Some terrific results here.

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

Quote from: bummedout on May 14, 2015, 11:51:39 PM
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 ED issues.

Good luck.

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

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!

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.

Received my first injection today at the Boston, MA VA Medical Center. About a year ago I was diagnosed with Peyronies Disease but waited until I was sure that I wanted to try Xiaflex. I have about a 70 degree up and to the left curve with loss of girth and hour-glassing. Today went longer than expected. I could not self induce erection so they gave me the injection to produce an erection.The injection worked just fine and the did the measuring, mapping and plotting required for the Xiaflex injection. The problem is that it took about 3 hours to get the erection to resolve. It was almost to the point to consider a reversal injection drug but it finally resolved. The plaque was located at or near the base and I received my first injection. I chose not to receive a numbing injection so the injection did sting quite a bit but I got through it. I was given a compression wrap which I am to remove after 6-8 hours. Slight discomfort but nothing too terrible so far.

Keep us posted.  I am considering that route once funds clear up a bit.

Hi guys, Today was my first injection.  Very tolerable pain on the injection.  This was at 11 this morning. it's 7:15 as I write this.  I have considerable swelling and bruising over the entire shaft. Id be scared but thanks to your comments, I see this is fairly common.  The injection was towards the head, behind the gland so as someone said the skin is thinner there, this could account for this.  My next injection is Friday, hopefully the swelling will go down by then.  Will keep you posted.

Again, thanks for your comments, it helps to know were not alone in the treatment symptoms.  No modeling until after the 2nd injection so no idea on my success. 

Fingers crossed!

Scott,

Don't expect swelling to go down until about 4 days after the second injection. However, I found that using Coflex wrap for several days helps reduce it and using a strong 200+ gauss magent helped keep swelling down. You can expect darkening of the shaft, which may or may not completely go away.

Swelling starting to go down.  Aside from the selling and sexy coloration, it's been pretty painless.  I'm anxious to start modeling but my doc said to wait until Fridays 2nd injection. Thoughts?

Hows it going w the injections, any improvement?

Modeling is tricky.  Start too soon and you re-injure.  Wait too long and it can "settle" with a bad shape which will leave you in the exact same spot. 

If it were me, I would work very gently at first, but not wait very long.  Patience and restraint is key at this point.