Thread for Guys in Xiaflex Trial - Currently or Previously

[james1947]

CVA California

Dr. Lue is one of the leading Peyronies experts in the world.
From this point of view, you are in the best hands possible.
Regarding Xiaflex treatment results, I think that the majority has/had good results.
In any case, this is the only FDA approved treatment for Peyronies.

James

[Timdvm]

Hello Roy,

  I can only speak to my experience - but the actual injections were extremely painful but went to a dull ache after a few minutes.   I was able to go to work and even the gym later that night without any issues and only Tylenol
   I will say this - they give you an injection to cause an artificial erection to identify the point of maximum curve and find the spot they want to inject the xiaflex.     I had engorgment and was basically erect for a few hours after the treatment once the pain subsided.    That was me of course, but depending on your work, make sure you are able to sport an erection while working without causing yourself any issues  

[Greg099]

First, many thanks to the creators and moderators of this forum.  My Doctor didn't do much to prepare me for the potential post injection effects, and I was freaking out last night until I found posts here regarding the swelling that turns out is pretty normal.

I am 53, with 45% curvature on top caused by trauma around 2 years ago.  I am able to function sexually, but it is sometimes uncomfortable and can be painful if the erection is too full.  After oral medications and time didn't make it go away, I decided to take xiaflex injection treatment.  I am in Florida.


I had my first xiaflex injection last week, after which everything felt and looked normal.  My Doctor told me I could have sex if I wanted to.  Thankfully for a number of unrelated reasons I was unable to, as the Drug Rep told me before my second injection that having sex afterward could be very dangerous.  

I got the second injection yesterday.  The Doctor was more aggressive, really pushing the needle into the plaque area and with considerably more pain than the last time.  He did not wrap, model or do anything other than giving me a brochure outlining stretching exercises I am to do 3 times a day until my next series in 6 weeks or so.  Nothing about keeping feet up, ice packs, etc.

So I went about my normal day, sat at my desk, worked, ate dinner, feeling a bit of soreness but nothing remarkable,  then I went to pee and discovered what looked like my penis trying to swallow a golf ball.  The swelling was on the right side and below the injection area, dis colored, and scary looking. Needless to say I freaked, especially after all of the warnings the drug rep gave me about ruptures caused by sex.  Even though I hadn't had sex, I wasn't sure if this was one of those ruptures or hematoma or whatever.

The on-call Doctor was worthless, and I was seriously considering the emergency room, when I discovered this site.  I'm not sure how I missed it during my previous research, but it was a HUGE relief to read the posts of others (especially PMRT's posts, which were right on point and very concise and helpful, thank you!), and to find out the swelling was normal and could even have been avoided somewhat with proper coaching from my medical team.

I calmed down, put my feet up, slapped a bag of peas on the swelling, and it went down considerably in a matter of less than an hour.  

I don't want to irritate the area, but since the only "modeling" my Doctor provided was self-stretching exercises, I'm planning to begin them today.  3 times a day, stretching by holding the head extended forward for 30 seconds.  If I get erect I'm to do some moderate counter-bending exercises, too.

Do these exercises appear to be enough?  Should I go back and ask him about the wrapping and modeling stuff?  My guy has not done a lot of these, so he may not be up on all of that.  I suppose that should freak me out to, but he's a very smart, knowledgeable guy and a great a Doc, so maybe the latest guidance is not to do all the wrapping/modeling?

I'll keep posting, as I now know how helpful that can be for the right person in need.  The ice pack didn't seem to hurt anything, but now that I know it's just standard swelling I will forego icing unless it gets really bad, just in case.

Cheers,

Greg

[RoyHobbs]

Thanks, Timdvm that's very helpful. Unfortunately I work in a business that is not of the adult entertainment variety so I will have to be strategic with my choice of pants.

Greg099-

Did you experience the same- an erection lasting for a few hours post injection?

[LWillisjr]

In terms of pain and discomfort, do you feel it's possible to return to work after your appointments? For example, if you have a round of injections in the morning can you then head into work?

Depends on the type of job. For a desk job I would say OK, but I wouldn't want to do anything strenuous.

[LWillisjr]

First, many thanks to the creators and moderators of this forum.  My Doctor didn't do much to prepare me for the potential post injection effects, and I was freaking out last night until I found posts here regarding the swelling that turns out is pretty normal.

Greg

Greg,
Thanks for joining. We can only learn from each other by sharing our experiences.

[Timdvm]

Hey guys
   My doctor recommended I wait 4-5 days after the second injection to start remodeling again.   I noticed that quite a few of you are starting remodeling right away --- has anyone had any complications by starting right away?   i.e tearing, more bruising etc.    and how much pain is there given the amount of swelling and bruising.
   I will say this is my second round of injections and the bruising and swelling is half of what it was first time around.      

[Greg099]

No erection after injection, though I woke with the 'morning wood' at about half mast the day after. I did some mild reverse bend exercise as instructed, but didn't push too hard due to the extreme swelling (not to be dramatic, but twice the normal size is a pretty shocking sight the first time you see it....not in the good way. Lol)

I did the stretching 3 times a day from day 1.  No real pain, but the swelling seemed to increase a bit.  I had a 2 hour flight on day 2, and found the swelling was still large and bruised looking.  I play lead guitar in a band and had a 2 hour concert that night (Friday) probably standing for 4 hours with sound checks and all. I realized that my normal boxer shorts might be exacerbating the problem (gravity and all), so I switched to boxer briefs which held things much better and was pleasantly surprised to find the swelling almost gone the next morning.  Today is day 4 and though the entire unit is still a bit larger and tender and a bit bruised looking, it is symmetric and looks mostly normal again.

I think the biggest swelling was some sort of fluid buildup, because it seemd to move around, one day on the side, next day on the bottom.  Maybe that is why the tighter boxers helped, as it held things higher allowing the fluid to drain out.

Just guessing, of course.  Could be just time passing, but  I think it's worth considering.

Didn't do ice again after that first night, as I was relaxed about the swelling and it seems opinion isn't firm on the benefit/risk.

Cheers,

Greg

[james1947]

Greg099

What about straitening? Can see improvement?

James

[Greg099]

Day 6, all normal. This morning wood looked like some improvement in the bend.  Maybe 5-10 degrees, but definite improvement.

[blackdiamond]

Does Medicare cover Xiaflex ??

[CalSF]

I am a patient of Dr Lue and have had several Xiaflex treatments.  I've posted elsewhere on this forum regarding some of my experience.  If anyone has any questions, feel free to ask.  I don't have any issues answering any question in the open forum.  I'm happy to share my experiences and help any way I can!

[pintor]

I am seeing great improvement in my condition after 3rd round of injections with xiaflex.  Prior to initial treatment I had hourglass deformity and 38degree curve to left.  Plaque was hard, and showing signs of calcification.  Now, plaque is very soft and smaller.  Best news is that hour glassing is gone and curve to left is less than 20 degrees.  This is very exciting!.  Actually my penis always curved slightly to left.  I will probably go another cycle, but already consider this a success.  Very happy.  

[Knight]

That is excellent news!

I was told they did not allow guys with hour glassing in the trial sessions so it is very refreshing to read progress in that area from at least 2 board members that I know of now.

Hopefully as many of you as possible will continue to keep us updated on your progress and experience as there are many of us hanging in the balance on what to do next.

How about discomfort during and after the injections. How bad is it? Some of the pictures I have seen are horrendous looking.

And what about traction? Is everyone doing Xiaflex injections also doing traction?

Knight

[CalSF]

I'm not doing traction, but Dr Lue wants me to start using a vacuum device.  It's ordered and on the way!  I'll let everyone know how that goes.

As far as the Xiaflex injection, the first time I had a lot of swelling, black and blue (to be expected), and a couple of blisters.  He was not happy to see the blisters.  I was very sensitive to Xiaflex.  The next dose I was given was a third of the normal dose and everything was fine.

[pintor]

Injection stings a bit but not bad.  Post injection is variable.  So far I have received 6 injections (3 cycles of two injections) an in 2 cases I had swelling and some pain (5 on a scale of 1-10), which was gone in 24 hours.  In these two cases penis bruised on entire top surface of shaft, but not on head of penis.  Bruise did not hurt and faded from purple to red to pink, and cleared completely in about 1 week.  My Doctor said that swelling and bruising is a good sign that drug is working.  I have not used traction, just daily modelling for 5 minutes.

In the other 4 injections, little or no visible side effect and no pain.  I don't really understand this, but I am happy with results.   I hope others have such success.

[BrooksBro]

It is my understanding that the FDA license permitting the use of xiaflex for treatment of peyronies is specific to 15 degrees of curvature or greater.  Any coincidental hour-glassing is just that, coincidental to the reason for treatment, which is the 15 degrees of curve.  If your presenting condition is only hour-glassing, without over 15 degrees of curve, the doctor treating you may be doing so "off label" for xiaflex.  Just my $0.02.

I had my greater than 15 degrees of curvature nearly completely resolved by two Xiaflex injections.  A much smaller plaque remains, as does the hour-glassing.

[Mending the Bend]

BrooksBro,

Very glad to hear that two shots of Xiaflex resolved your 15 degree curvature (Since I started out at 39 degrees, I'll consider *getting to* 15 degrees a very acceptable end result).

I'm curious about your comment that your hour-glassing remains. Two questions:
1) Does the hour-glassing cause you any erection rigidity or stability issues (ie, hinging)?
2) Did your injects target the locations of the hour-glassing, and they just never resolved? Or were the injection locations not at the site of the hour-glassing?

Thanks!

Mending

[CalSF]

One of the problems with the hourglass issue and Xiaflex, is the fact that you can't inject too close to the urethra.  The Xiaflex can dissolve a hole in the urethra which is problematic to say the least!

My original bend was 90 degrees down and now it's about 20 degrees...Maybe a little less now.  Xiaflex can inadvertently help with the hourglass issue.  When the scar tissue dissolves and / or breaks, depending where that strand of scar tissue is running, it can relieve some of the hourglass shape.

[saramon]

Hi everyone

Received a PM from another member about my current status, thought I would post it as it gives my perspective 2 years after the Xiaflex trial, hope it gives some help / hope to others who have this disease.

Here's the text from my original post on the results:

Have just completed my penultimate followup prior to Christmas which involved a measurement, I'll never get used to those injections.

Just to recap from my previous post back in September where I reported the following changes over the course of the trial:

Cycle 1:   8° change, no change in length
Cycle 2:   2° change, no change in length
Cycle 3: 10° change, no change in length  
Cycle 4:   0° change, no change in length

This time the Doc measured a further 2° improvement and mentioned that he was seeing ongoing improvement in a number of other patients in the followup period.

The measurement process is not a precise science but hopefully he has enough practice to be consistent.

He also reiterated that he could no longer detect any plaque which he seemed to think was significant.

So overall improvement now at 22° leaving me with a 28° curvature.

One more follow up in 6 weeks so will report the conclusion of my experience after that.

Thanks
S.

The drug didn't fix the curvature totally but my partner reports no difference in sensations or feeling for her, I now need to use viagara to maintain an erection ( I get the cheap stuff online from aumeds.com) but that could be my age as well (57) but I don't think so.

I have had some loss of sensation so takes a lot to achieve orgasm (compared to prior Peyronnies which my partner does not mind - she gets a longer experience). I just have to be a bit careful as the erection is not that strong but adequate to do the job so to speak.

I have lost some length but girth is ok I think.

The doctor did suggest surgery to resolve the bend entirely but I didn't think any benefit would compensate for the loss of further length and it appears to be working quite adequately anyway

Can't tell if there is any further change in the curve over time but it does not impact on our sex life, in fact I would suggest that it has improved a bit from my comments above.

I don't think I would consider another course at this stage, I did ask the question at the time but as he could not locate any further plague at the time there would have been not target for the Xiaflex anyway.

I will probably post my reply to you on the forum, just to give a perspective from someone 2 years down the road so to speak.

Thanks for your interest and the information,hope my observations and experience can't be of some use to you and others in making decisions to use the drug.

Regards
S.

[SunnyBob]

First time posting. I started my Xiaflex injections Monday after a year of a 60degree curvature. Injections were fairly painful. Swelling was out of this world. Penis swollen to about 3x normal size after 12 hours post injections. Swelling went down after 24-36 hours but my Dr decided to wait an extra day to do the second injection set. Originally scheduled for 48 hours after first injections. I waited an extra 24 hours to allow for further reduction in swelling. Second injection more painful but less swelling. I had an early morning erection while asleep on the second day and heard/felt a POP, then strong pain behind the head. It remind sensitive for the rest of the day. Dr thinks that was actually the collagen plaque starting to fracture, which is a great sign.

First modeling session is Monday morning. What should I expect with regards to pain? I'm supposed to drive 3 hrs to a meeting then 3 hours back home. Any thoughts on whether that will be affected by the modeling?

[CalSF]

Hey SunnyBob, the same thing happened to me.  I was sensitive to the Xiaflex and had a strong reaction as well.  The second time around, the amount of Xiaflex was reduced...I'm guessing your doctor also reduced the dosage.  I also had scar tissue break.  At first I didn't know what it was.  Dr Lue did an ultrasound of my penis and it turned out it was just the scar tissue that broke, which he said was a good thing!

Best of luck!  Looking forward to some updates!!

[RoyHobbs]

Just out of curiosity, if they're using a smaller dosage are they spreading it out over more injections? I mean you're purchasing the entire vial and that vial is incredibly expensive. Where is the remaining xiaflex going?

[SunnyBob]

Thanks Cal.  How bad is the modeling? Will I need to rest up after it?

[CalSF]

Just out of curiosity, if they're using a smaller dosage are they spreading it out over more injections? I mean you're purchasing the entire vial and that vial is incredibly expensive. Where is the remaining xiaflex going?

I don't know how they bill my insurance company or what the protocol is for unused product.  Does it only come in one vial?  If so, maybe they need to produce it in smaller size vials or a glass ampule.  I wouldn't want extra injections of this product just because I paid for it...That could be and most likely would be disastrous!

[CalSF]

Thanks Cal.  How bad is the modeling? Will I need to rest up after it?

I haven't had any issues to speak of.

[SunnyBob]

Several quick updates:

- Modeling/Stretching was today. Extremely painful and caused some more swelling but it didn't last long and the swelling went down in a few hours. Dr pulls the penis straight then bends it vigorously up, down, right and left about the "fulcrum" where the plaque was. (3) sets of 30 seconds each.
- He didn't feel any plaque and said it felt very elastic. That's encouraging since my morning erections have been virtually straight even though I had a 60 degree curve before.
- Now I do the stretches at home for 2 weeks with no intercourse during that time, then return for evaluation.
Insurance has a deal with US BioServices where all costs except Dr co-pay is covered.  

[james1947]

SunnyBob

Your improvement is amazing!!!
Strait erection after having 60 degree curve is a huge achievement.
Congratulations

James

[PMRT]

All:
I am the second individual in MA to start Xia Flex so I am further along in the process than anyone else in this state except one person.  I also have a doctor who is one of the top three most experienced in the country administering of the drug: Dr. Connors, Men's Health Boston (Brookline, MA).  He is fantastic.  I have tried to chronicle every aspect of treatment from beginning to end because I believe it is important to provide every last detail, leaving nothing to the imagination for those who struggle with this nasty disease.  I don't read a lot of the posts.....a few....and from experience I can tell you there is some misinformation being spread.  Also, posts tend to be very short....one or two sentences.  They leave one with more questions than they answer.  

I just had my first shot of round 4 a few hours ago.  I asked the doctor not to wrap so tightly this time and he complied so discomfort was minimal afterwards.  I decided to work at my desk after the shot (I work from home) and therefore have some swelling from sitting instead of laying on the couch but it is not bad.  I am not sure if you can sort posts by screen name but I suggest you do, and read my posts.    Most of them are in an other topic under my screen name PMRT.  

The doctor says improvement is exponential.  Therefore even though I have seen a decent amount of improvement I should see a lot more with this shot.  And as I said in my last post a 5th round is possible. Email if you wish at:  paulmrt57@gmail.com but read my other posts first. Your question may be answered there.  

[james1947]

PMRT

You are very critical about other people posts, so maybe you can elaborate your sentence bellow that we may understand what's wrong:

....some misinformation being spread...

James

[bromania]

My first time here and I am scheduled for two Xiaflex shots next month.  Needless to say, reading the posts here I am extremely nervous.  The good news is that I see my doctor's name among the posts.  I think Dr. Lue is amazing and I can't imagine anyone more knowledgeable.  My Peyronies Disease is about a year in.  I have an hourglass at the bottom of the shaft and probably a 45 degree at least curve upward.  Obviously, loss of length etc.  Circumference is okay but it gives me pause to wonder if I can just get buy.  The vacuum, Arginine, Ubiquinol haven't seemed to make things any better.  The Pentoxifylene has reduced the calcium deposits.
Dr. Lue's practice shows a very good result overall with almost no complications.  I guess you just don't want to be the 0.5%.  The modeling sounds horrendous.  Has anybody been through it all who can offer recommendations, results?  I'm not going to look at any pictures.  I know we think about causes and Dr. Lue also mentioned that a catheter could be a potential cause (I had a TUNA procedure on my prostate.  But who knows.  Thanks all.  This is a great site.
 

[james1947]

bromania

From your post I understand you are a male.
So please change your gender from female to male in your profile.

James

[PMRT]

Hi James:
One example is someone reported that Xia Flex will "eat through the urethra".  I asked about that. My doctor said definitely not.  My other observation was that many posts are only a sentence or two and, at least for me left me wanting for more information. I found it difficult to gain a picture of what is accurate and what the risks are by piecing together different posts....which is why I don't read a lot of them.  It  got me anxious and nervous.   It seems to me those who have been through the experience.....me or others.....are in the best position to report to those considering Xia Flex what is accurate. I even went into detail about the $700 rebate.   Given that my doctor is also amongst the most experienced with the drug I think his responses and advice are also worth listening to.

My 7th shot was yesterday.  It has pretty much become routine....as much as something like this can be, I suppose.  I am no longer nervous.  My doctor is pleased with the results so far and says the scar tissue has softened a great deal (which is why it bends straight more easily). He also says the majority of improvement happens in the last two series of shots (shots 5-8) which is precisely what I am experiencing.  Again, I am realistic, having read the actual study results.  I am not expecting a perfectly straight shaft although others  may get those results.   So,  sorry about being overly critical.  I am just trying to report as accurately and fully as I would want to read from others. Which is why I give an email address if people want to email me.      

[james1947]

PMRT

I am appreciating very much your detailed posts.
I don't appreciate your sentences negating/criticizing  hundreds of people post, many of them posted they Xiaflex experience during years. We have 50 topics and 1840 posts on the Xiaflex board. Maybe you should read all (as myself and other members has done) and then post your critics.

James

[SunnyBob]

Thanks James. I hope the improvement is retained. I'm still very sore from the modeling yesterday so was only able to do one set of stretches today. For general info, I did not try any of Rx prior to this. My Dr wouldn't prescribe them. He said he had tried them and didn't think they really worked well enough. I did try CoQ10, Vit E, enzymes, VED, stretching and...I think that's it. I only experienced minor improvement from those treatments. I hesitated to share the improvement I've seen so far but it's holding for now, and I pray it continues to.

Definitely better than the clinical studies suggested. My Dr says he is getting mixed results. He's done about five patients and his partner has done about 20 so far.

[CalSF]

Hi James:
One example is someone reported that Xia Flex will "eat through the urethra".  I asked about that. My doctor said definitely not.

Hi PMRT,

This I believe, is directed at my comment or to be more direct, Dr Tom Lue's commment to me.  If you're unaware of who Dr Lue is, he is also one of the top specialists on Peyronie's disease.  First of all, I didn't say Xiaflex WILL eat a hole in the urethra...I said it can put a hole in the urethra IF injected to close to it...Make sure you include the entire sentence!  From that point it would need to be repaired with stitches.  It is a fact and make sure that when you posed the question to your doctor that it had to do with injecting Xiaflex to close to the urethra.  Doctors will not treat scar tissue that is located to close to the urethra with Xiaflex.

I want to take a moment to talk about how Xiaflex came to be.  Many of you may know this already.  This is a simple explanation but it should make sense on why Xiaflex could put a hole in the urethra.  Scientists knew of no compound / drug that could dissolve scar tissue.  However, they noticed that when a body decomposed, that scar tissue decomposed as well.  From there, they began isolating certain bacteria / enzymes and a long road to Xiaflex was born.

I'm sure many of you have seen the photos where too much Xiaflex has been used and there has been a bad response...Severe swelling, blistering, severe discoloring, etc.   PMRT, you said you haven't bothered to look at most of the posts on this site...Here's a link that is on this site...It shows what Xiaflex is capable of if too much is used.  The point is, although Xiaflex is helping many people including myself, it's a medication that has the potential to be quite dangerous if misused or used by someone who is not qualified.  Here's the link...http://xiaflexpoison.blogspot.com/

[CalSF]

The quote deleted by moderator. Please read the forum rules. If you will not comply with the forum rules you will be muted temporarely!!!

Hi bromania,

I am also a patient of Dr Lue and have had several shots of Xiaflex.  Feel free to PM me if you have any questions!

[yyy]

are you having results with xiaflex injections?

[PMRT]

James:
I already apologized for being overly critical.  

CalSF:
I will ask my doctor about it tomorrow but I suspect you are correct.  I will read more carefully when I do read.  Personally I know the history of Xia Flex and the theory behind its use but it is good for others to read it.  To add to your history I also believe it was used successfully for Dupuytren's Contracture before Peyronies Disease, and the medical community saws similarities between the scar tissue in DC and Peyronies Disease.  Coincidentally I had (another) doctor with DC and Xia Flex permanently alleviated that condition for him.  That was my first exposure to Xia Flex and its possibilities.  However there is no question but that Xia Flex is a far more virulent drug than say, Verapamil, and in the hands of someone inexperienced the problems could be many.

You bring up another good point. I don't know how you found your doctor but I found mine through my allergist of all people.  I wish I could say it was careful research but it was just plain luck that I found the single most experienced doctor on Xia Flex in MA.  My urologist is 45 years in this field but is a total and complete dolt when it comes to Peyronies Disease. He couldn't give me any recommendations at all except to "live with it".  I think it behooves anyone considering ANY type of shots in this part of the anatomy to carefully seek out and verify they have a doctor experienced in this drug before proceeding.    

[CalSF]

Hi PMRT,

It's funny how mentioned it just being luck that you found a top Peyronie's doctor.  I was the same way.  It just happened to be a matter of geography.  I live close to and actually work in San Francisco where Dr Lue practices at UCSF.  My first urologist was a big fan of his.  You and I are very lucky!  This is one of the reasons I try to help everyone here with as much info as I can...I know you're trying to do the same, which is great!  I really feel for the members of this forum that don't have access to a urologist who is experienced with Peyronie's and / or Xiaflex.  So, anything I can do to help or any question I can answer, I am more than happy to do that!!

[james1947]

Both of you are lucky to find doctor Lue, one of the world leaders Peyronies specialist.
The forum knows him from the very start of the forum, some members even before.

James

[PMRT]

CalSF:
I could not agree with you more.  This is why I post in such detail.   My latest update is below but first a couple of issues:

I asked my doctor about the urethra thing and here is what he said:  Ventral (bottom) scars are located below the Urethra but above the tunica albuginea. This area has only one sheath layer whereas dorsal (top) scars have two. Injecting ventral scars runs a higher risk of penis fracture.  So, while he is not necessarily disagreeing with your doctor he is saying he doesn't quite see it the same way.  I think the summary is there are going to be differences of medical opinion on this just like there is with many medical topics.

For Laddy2266:  
My doctor says Dr. Mulhall from Sloan Kettering is the best there is in this field and anyone using him is in excellent hands.  He also agrees that unfortunately there is indeed a significant incidence of Peyronies Disease developing after prostate removal, and anyone considering prostate surgery should know about this. He says unfortunately cancer doctors are less interested in sexual function per se (or as much as) a urologist who specializes in reproductive health issues such as a Peyronies Disease.   In the best circumstance one considering prostate surgery should have a team of two doctors, each knowledgeable in an area, communicating with each other on the patient's behalf.  Yeah, right. We know how likely THAT will be under the new health care law.

My update:
I had my last modeling this morning.  Because it was the last one I told him: "Hey doc, knock yourself out" so he went extra hard on the pressure and worked it a couple extra times.  The result: I am massively swollen with blood puddled in the skin below the head causing deep purple bruising but I know this is to be expected.  And sure, it is sore to the touch but I can function normally otherwise (I would not try jogging, though. .   I will see him in 4 weeks to assess curvature and the size of the scar.  I'm no doctor but frankly I expect both to still exist and therefore am fully prepared to go 5 rounds.....or maybe even more if there is a chance of continued improvement.  

To recap: 1st round: Massive bruising/swelling.  2nd round: massive swelling that lasted weeks, not that much bruising. 3rd round: moderate swelling.  No bruising.  This is the round where I saw the most improvement so far.  4th round this week: little swelling.  No bruising.   Dr. Connors does not consider this typical, however.  It could just as easily be the other way around.  I think the point you should take from this is you may or may not have either or both and in any order.  It  is too soon to see improvement from round 4.

Mr Doctor alternated shot entrance points. First shot of the week on one side and the second shot on the other side, but this week due to a particularly dense scar that is causing a pull to the right he concentrated both shots on that side in that one spot.  I think that's about it.  

[james1947]

PMRT

Thanks for the update.
I have a question: Who is Laddy2266?
A search for members didn't give me no one.

James

[SunnyBob]

Quick update on my situation. Now a little over a week after my second injection and four days after vigorous modeling. No swelling now but still some bruising. Right behind the head is VERY tender and sensitive. Very difficult to stretch since it's so tender. Best I can tell is I am at about a 10 degree slight upward bend where the major plaque was, then a slight downward bend just beyond that, so net pretty close to back to zero again. Hoping the pain and bruising goes away soon.

[Knight]

I would like to thank PRMT and others here for sharing their experience. I am a candidate for either the shots or graft surgery and I'm somewhat on the fence with it all deciding which procedure to proceed with. Having real life case studies who have currently endured both procedures in real time is invaluable.

Good luck to you all and please keep the info coming!

[SunnyBob]

So ten days after the second injection and six days after the modeling, I achieved a full/solid erection this morning. I have been hesitant to do so till now due to all the warnings in literature and by my Dr about penile fractures. I was able to measure the curvature and at full erection, I'm just under 30 degrees. Not quite the virtually straight I saw at first, but that was when I still had a ton of swelling and penis was not fully erect. Still it's about a 50% improvement over the 60degrees I had prior to the injections. This is the best result shown in the clinical trial literature so I'm pleased with that, and hope it stays that way. It's still very tender and difficult to do the stretches and I hope that improves.  

[Cantstopme]

Hi Guys. I've been a member and been reading various threads on this board since December 2013, a few months after I was diagnosed with Peyronies. When diagnosed, I had some plaque and shortening during erection but, very quickly, the plaque got quite large and my erection developed into a full on 60 degree + bend, straight up, very near the base. I'm still amazed at how fast it developed and how stiff the bend is, like an elbow bend in steel pipe! Intercourse was, and is impossible.  

I had seen three different Urologists and been through various treatments which were mainly supplements and "wait and see" until I found Dr. Avila in Phoenix. He knows a great deal about the disease and has even done surgery to correct it (showed me some gruesome pictures). Even though Xiaflex had been approved for this, my insurance company didn't have the proper codes, etc. in order to approve it for Peyronies Disease. So, I started on Verapamil and went through, 7 injections of the 16 week, 8 injection course (with some softening of the plaque but no improvement in bend). Then, I got a call I was approved for Xiaflex at only $20 co-pay per injection (Yay, more needles in my penis!).

I just finished my first round of two injections and modeling (I asked for pain block after reading PMRT's posts). After the injections, I had some swelling but lots of bruising, something I never experienced with Verapamil. I thought I would be really sore after the modeling when the numbness wore off but, surprisingly, it wasn't bad. I know Dr. Avila really cranked on it, too. I can already feel a difference in the plaque but will have to wait to see what my erection looks like after the swelling and bruising fade. I'm hoping all the Verapamil injections softened the plaque enough for the Xiaflex to finish the task quickly. Im sick of being poked in the penis!    Stay tuned...

[james1947]

Cantstopme

I am surprised that after being on the forum some 8 months, you made the Verapamil injection. If you were reading the forum members reports regarding Verapamil you was finding out that the success rate is close to zero.
Any how, wish you success with the Xiaflex.

James

[pintor]

I am now in cycle 4 of xiaflex, and definitely have reduced curvature and as a bonus my erectile disfunction appears to be gone.  My question is regarding inconsistency of drug effect.  I have now been injected 7 times, but on only 2 occasions did I see the initial swelling and bruising that took about a week to clear.  The other 5 times there was no evidence of the side effects.  Have others seen a lack of swelling/bruising with some injections?  It seems strange to me that my response to the injection should be so variable.  Thanks, Pintor

[Mending the Bend]

Pintor -

Congratulations on the success of your treatments so far. I've been injected twice, and I've had extremely minimal swelling both times, no bruising once and very minimal bruising the second time.

The following is my theory about a potential cause for the variability of reactions (disclaimer - I'm not a biochemist or a doctor):

If the injection of Xiaflex liquid is deposited entirely within the plaque, you are likely to get almost no bruising and swelling. The collagenase will spend the next few days cleaving collagen in its immediate vicinity until it is no longer clinically potent - having been broken down by proteases. Remember, the plaque is very dense and Xiaflex molecules are relatively large.

But if you receive an injection that is partially outside of the plaque, then the collagen may be more mobile within the surrounding tissue, resulting in wider area of disruption to cell function - and subsequent bruising and swelling.

So I'd say that you received 5 injections that were fully on target, and 2 wherein the drug reached surrounding tissue. I'd say your doctor is doing an excellent job.

Good luck.

Mending the Bend