Thread for Guys in Xiaflex Trial - Currently or Previously

[tlyle0]

I received my Xiaflex treatment this week.  It was set up to start on Monday and Thursday for the injections with modeling to occur the following Monday.  Today is Saturday, and I go for modeling on Monday.

First of all, the first injection was painful, but I powered through it.  It caused swelling and caused my foreskin to completely close off the end of my penis where I had to forcefully had to pull back the skin just to uninate.  Additionally, I received heavy bruising just above my penis in the fat pad.  I was unable to do the required pulling/modeling due to my penis being trapped within my foreskin.

I contacted my Doctor on Tuesday afternoon about the swelling, and he said to use warm moist heat on the affected areas.  He said to not use ice as it would affect the drug.  So a heating pad felt good to the painful areas along with a hot shower.  Additionally, I took Ibuprophen which helped dull the pain.

By Thursday the swelling had gone down somewhat.  I went back to my Doctor who said the side effects were normal.  He then examined the plaque area and said if felt softer than before.  He began to do some modeling (breaking up the plaque).  Afterwards, he did the second injection.  I had the same symptoms as Monday, but I was more prepared for the pain and inconvenience this time.  Again, struggled to try and urinate through a very closed foreskin hole.  

By Saturday, the swelling has subsided, and i am able to try to model the plaque area somewhat.  Will let you know how Monday goes.

As far as approval, My insurance company (United Heathcare) approved, and I paid my copay of $40.00.  I will have to wait until the claim is processed to see if there are any additional costs.  They sent me a letter saying pre-approval had been granted, but they did not have a physician in my area (Atlanta, GA) on their list who administered the drug.  US Bioservices is company who sent the drug.  I had to do a phone pre-screen with them.  They also told me I was pre-approved by my insurance company, and I would not have any costs for the drug from their perspective.

Lastly, my physician is Dr. Steven Morganstern.  He has been wonderful and has done several treatments to help allieviate my Peyronnies Disease.  We tried Endo (CO2) treatments along with changing drugs/vitamins and diet.  He has monitored the Xiaflex trials and felt it would hopefully correct my problems which is mostly at the top with a 35% to 40% curve.

[james1947]

tlyle0

Thanks for the information.
Could you give us some more information regarding Dr. Steven Morganstern?
I would like to add him to our doctors list.
Information like:
Address, organization (clinic, hospital).
Expertise.
Contact info.

James

[Timdvm]

Hey TlyleO
  Can you describe more about how the doctor did your remodeling.   It sounds like he did more than simple traction and stretching.  
Timdvm  

[tlyle0]

Below are the links to Dr. Steven Morganstern's practice.  Dr. Morganstern has published several books, been on CNN, done several television shows, and provides training to other physicians on Urological and men's health issues.

Morganstern Urology, P.C. & Men's Health Center - Atlanta, GA
Atlanta GA Urologist | Atlanta Urology | Urology in Atlanta GA |404-352-8220 | MorganStern
Peyronie's Disease: Treatments, Penis Curvature |Atlanta Urology | MorganStern

For Timdvm, he basically did what you said which was simple traction and stretching.  But I did notice that he used his fingers to squeeze the plaque section to somewhat break it up.  He did not apply a lot of pressure.  It was more like softening it up gently with his fingers.  However, the main modeling will occur on Monday.  Not sure yet on what to expect other than more temporary pain.  At this point, I am ready to see if this works and move on with my life as most of us are.

[james1947]

tlyle0

Thanks for the info regarding  Dr. Steven Morganstern

James

[michaelb]

Thanks for sharing everyone.  As more and more people are getting this done every day it is great to hear.  I should be getting this done within the month now that the 3+ months wait on insurance is over.  

This does not seem pleasant but I really don't care at this point since it seems like it's working.  

[BrooksBro]

Today marks two weeks since my first Xiaflex injection.  The "bruising" (not painful, just ugly) is all but completely gone, as is the swelling.  Two spots continue to be tender to touching, one of them is where my plaque USED TO BE.  I can no longer feel the same plaque in that area, but it is still a little bit painful when I feel there for the plaque.  I continue the 3X daily stretching.  Just two more days until I can decide if the pain has decreased sufficiently to see how it works.     Just last night "the wife" was asking me how I was feeling.

If all goes well with sex later this week, I am going to think seriously about cancelling my scheduled second injection series (mid-May), before they order the medicine from the distribution pharmacy.

[james1947]

BrooksBro

What about the symptoms?
What you had and if, all gone? (like shortening, girth lost, bend, ED)

James

[michaelb]

[Full quote removed]


Yeah this what we all want to hear about haha

[tlyle0]

Update on my third visit with Dr. Morganstern.  We did the modeling today which bacially was what he did last week after the injection.  He spent about 5 minutes simply pulling my penis length wise numerous times with gentle pulls.  Dr. Morganstern again said we don't want to over do the modeling exercises to prevent any possible hemorrhaging.  He also said that the plaque is softer than before down the length of my penis, but he did observe that plaque at the base was still there.  He is thinking that the next treatement in 6 weeks will address  that plaque as the injections last week focused on the plaque down the length of my penis (my plaque is at the top of my penis).

I did share that over the last week since the 1st injection, I did get a morning erection just as I did when I was younger.  This had not been occuring since the Peyronnies started.

He then reviewed my blood work and advised me that the bruising and swellwing will continue to subide.   Lastly, he did say he wanted to see me again in 2 weeks.  He wanted me to continue doing the modeling exercises over the 2 week period.  He wants me to try sex again in 2 weeks to see if there are any improvements.  

I shared that I posted his information on this blog.  He was happy and would welcome any calls/questions to his practice about Peyronnies.  He did tell me that his approach is to do Endo Stimilation treatment/drugs at first before moving to the injections and sonic treatment.  The Endo Stimiliation did help me by reducing my fat pad and opening up my urethra for better urine/stream distrubution.  It did help with reducing some of the curvature, but he decided that Xiaflex would be the next best course of treatment.  Again, I am doing this to get past all the problems I have faced with Peyronnies.

[james1947]

tlyle0

Your results are encouraging.
Let us know how was the sex also.

James

[Timdvm]

Is anyone taking Neprinol AFD along with the xiaflex injections?    I have starting taking 4 capsules twice again after starting the xiaflex injections.    
My bruising is gone and I can feel the "stretch" and pull in the plaque area as I do the stretching exercises 4-5 times a day for 30-60 seconds.   Have a remoldeling office visited next Tuesday.  

[PMRT]

I posted six weeks ago after having my first set of injections.  Last Friday I finished my second set....injections Tuesday and Thursday, and modeling on Friday. So that's four shots total so far.  Before posting this I read several of the posts below it.  Many people report similar things I am going to report.  One or two are different.   First,  my doctor is not against cold packs after the shots but I will ask him more about this next time. I did not apply a cold pack on the very first shot.  I work from home. I came home after the very first shot with the tight wrap on.  After three hours I removed it but continued to sit in a chair and work. The bruising and swelling that occurred a few hours after the wrap came off was very significant.  It took a few weeks for it to go away completely.  THIS time after the first shot on Tuesday I came home, laid on the couch and used a cold pack on for 20 minutes, off for 20 minutes for three hours.  Next day?  No bruising or swelling whatsoever.  I did the same thing two days later on Thursday. There was some bruising and swelling but when the doctor looked at it on Friday he said: "ok, I'm a believer in the cold packs".  Elevating your legs is important.  Side issue:  When the doctor applies the tight wrap, if he does not wrap the head of penis it will swell tightly with blood and every minute you wear that damn wrap after the anesthesia wears off will be very painful.  TELL HIM TO WRAP THE HEAD AS WELL and the 2-3 hours you have to wear the wrap will be literally comfortable.  No question about this. Don't forget. You will regret it.  Modeling:  I found modeling (the first time) without the anesthetic block to as painful as having a tooth pulled without Novocain.  Never again.  This time I had the block.  Aside from no pain the doctor was able to perform the modeling substantially longer than the first time, which I take as a good thing.  I swelled very, very significantly within an hour after the modeling and the bruising was also very significant.  Tender to the touch as well.   I came home and laid on the couch again and iced it on and off as above all day. That helped a lot.  Now three days later I am still swollen but frankly I couldn't care less.  I cannot say I had any improvement after the first round......ok, maybe a little bit but insignificant.  My doctor was not surprised and said most improvement happens towards the end. I have about a 65 degree bend. He says there is better than a 90% chance we will improve that by half.....good enough I suppose.  I saw a picture of a 35 degree bend and it looked more or less straight to me.   More: Doctors are required to follow a strict protocol with administering this drug but later they are usually given more latitude to try different things.  There is an excellent chance "down the road" that the FDA may open this up to additional "trials" during which doctors can experiment a bit with different techniques.  Free medicine will be made available.  I am already on the doctor's list for that time whether it is 6 months or 6 years from now.   I will probably post after my 3rd round in 6 more weeks but I will not be on this site before then. Email if you wish to paulmrt57@gmail.com    

[IhatePD]

A few question for those using the Xiaflex injections:

How long are you supposed to refrain from sex after receiving your injections and modeling?

Have any of you had sex since you went through the procedure?

Can you describe what it was like? I am fearful that the Xiaflex might weaken the penis and make it more at risk to  further injury?

[RoyHobbs]

I can tell you that Dr. Gelbard, my doctor in Burbank and one of the main doctors in the trials, told me that of the 3 men who suffered a penile fracture two admitted to having sex before the two week waiting period post injection was up. So I guess you should wait at least two weeks. But I'll probably wait a month just to be safe.

[BrooksBro]

Three weeks after my first Xiaflex injection, all the "bruising" and swelling is gone.  If there is any of my plaque remaining, I have great difficulty feeling it.  There is a small tender and red area where the plaque used to be, but the plaque itself is no longer there.  The curve that I had has been reduced.  I still have some hour glass effect.  I will continue the 3-times daily stretching and holding for 30 seconds for at least the next three weeks.

I have used the smallest cylinder of a 3-cylinder VED to produce a pull (as in the VED protocol), and that seems to be more effective than manually stretching.

I still have ED, in my case, primarily venous leakage.  Blood inflow is good enough to produce an erection, but retaining it firm and long enough for satisfactory sex is the challenge.  I don't know if, or how much, that may improve in the future.  I will continue taking 100 mg viagra, and then using a vacuum pump and constricting band for penetrative sex.  I don't seem to need that for masturbation, either by myself or when my wife does it for me.

Overall, I am pleased with the result.  Xiaflex may not be a magic bullet for everyone, but it surely seems to be the medicine that I have been waiting to get for my Peyronie's since 2009.

I called my doctor this week and cancelled the appointment for a second injection series, because I don't need it.

When I get the final benefits statement from my insurance company (BCBS TX PPO), I will provide that information.

[nemo]

BrooksBro, if you can no longer feel a plaque after the Xiaflex shot - that is tremendous!  Have you ever had a scan done to show the plaque?  Or do you plan to have one done to show it (perhaps gone) now?  

Really excited for you.  This is good to hear.  

Nemo

[pintor]

I had no swelling or bruising after first an second injection, which were 3 days apart.  After about a month of modelling there may be some subtle improvement but it is hard to quantify/measure.  My second cycle with Xiaflex starts next week.  This will be 2 more injections 3 days apart.  Hoping to see some more notable results.  Good luck to all.  

[BrooksBro]

Over the past five years, I have had at least three color Doppler ultrasound scans.  The last one was the day of my first Xiaflex injection, so the docs could visualize the plaque.  Since I can no longer feel the plaque, I do not think there is any need to have another one done.  

The ultrasound itself was not uncomfortable at all.  That is, if you are comfortable with a 20-something year old, attractive, female ultrasound tech, and four male doctors looking at your cock.  In some ways, it reminded me of working my way through college as a male stripper.  

The most uncomfortable part is the multiple injections to produce a rock hard erection and to reduce it after the scan.  Laying on a table with your pants off and looking at porn books, trying to get an erection was not uncomfortable, just a little awkward.  That would have been better if they had turned the lights down.  

[james1947]

BrooksBro

Sounds a real Peyronies treatment. Not to feel the plaque anymore is great.

That would have been better if they had turned the lights down.

They will have to change the book to a movie.  

James

[Timdvm]

Update - I am about three weeks post xiaflex injection.   The plaque where the xiaflex was injected is soft and it almost feels "normal".  My plaque is quite long down the length of the shaft so I will need more injections further down the plaque.  
During erections I see much less of an hour glass at the original site and the bend is definitely less when I stand up.  It is still "weak" at the point of the bend still giving me a "floppy head" if you will but I am seeing improvement.  
I know the xiaflex is removing the scar tissue but will not replace the elastic part of the tissue that was damaged so I am curious as to how much length and girth I will restore - if any.  
I am also taking neprinol daily which is designed to control scar tissue and fibrin.      Doing stretching and straightening multiple times a day for between 30 seconds and a minute.  

[nemo]

This is very good news, guys. An injection that is actually reducing/softening/shrinking scar tissue is what we're all looking for.  Your point about not restoring elasticity is well taken though.  Still, seeing an hourglass reduced - to any degree - must be very exciting and give you a good feeling.  

Best,
Nemo

[james1947]

I made the topic sticky that it will remain on the top so we can follow more easy the Xiaflex injections results.

James

[JohnG]

I'm currently a few weeks post-Xiaflex injection and so far the treatment seems kind of benign.  There hasn't been a huge change IMO.  There seem to be two major areas of plague (or whatever).  One is on the topside of the penis and I call it the flying saucer as it seems round. This is where the injection was placed and there is maybe a slight reduction in size.

The 2nd and the culprit of most of my problems is on the underside and feels like a piece of cartilage and is about 1 inch long.  It bends inward fairly easily but not backwards.  It's the location where my curvature is and seems to be the point where blood stops flowing as well.  My penis has shrunk from about 8.5 to about 7.5 and only gets fully engorged if I'm taking Cialis or something, which I hate due to the headaches.

My urologist says he can't treat what is underneath but I wonder if others have this same issue and have a way to treat?  Does applications of lavender oil help? Are there other topical or oral solutions I can use?

Thanks,
John  

[james1947]

JohnG

Regarding:

My urologist says he can't treat what is underneath

You need a second opinion.

James

[nemo]

I believe the deal with Xiaflex is that it doesn't work well on plaques on the bottom side of the penis - my guess is this is so close to the urethra, it makes puncture a danger, but I don't know this for a fact, am only surmising.  

Nemo

[user of no names]

I recently went to the mayo clinic to get reevaluated. If anyone lives in MN Dr Landon trost is the guy to see and the only one in state that does the injections as he was part of the trials. My current curvature is 20 deg right, 10 deg down, and rotation of 25 deg. Dr trost is willing to give it to me off label and my insurance approved it. My question is how he described the injections. He calls the procedure a chemical knife. He said it's not actually injected into the plaque but above and below. This injection is supposed to create small tears in healthy tissue near the plaque so that the tissue can stretch more and straighten the erection. This tearing is replaced by new healing that could turn into new plaques. If the injection was into the plaque then this area would have to be replaced with a graft possibly. He is not against injecting into the scar, as mine is not calcified, but described the procedure as above. He also thinks the rate of fracture is 2-3% and there will be a lot of lawsuits down the road from side effects including possible new scars from the procedure making peyronies worse. (*&()*&)(*&)(*&)(*&. Can't post the link cause the forum keeps renaming the letters P D to peyronies disease. Here is how to find it. Google "xiaflex rems training guide" and its the second link. Look at pg 16 and 19 question 6.

-has anyone had a similar explanation given to them?
-aren't the injections suppose to be in the plaque?

Thanks jesse

[loyalty]

I had 8 injections of Xiaflex as part of the Auxilium phase 3 trial.  The Urologist who gave each of my injections, pushed the needle deep into the thickest part of the plaque and injected the Xiaflex slowly along the needle tract as the needle was withdrawn.  He injected from different angles and even different sides through the course of injections. He described the effect of the Xiaflex on the plaque as being like "battery acid" and is meant to dissolve the abnormal collagen that makes up the plaque.  I would be very reluctant to allow a doctor to inject the Xiaflex into the normal tissue above and below the plaque as you describe.

[Colorado]

Got my injection 1 of cycle 1 today.
The Urology Center of Colorado (TUCC) in Denver.
Fully covered by Cigna.  Approval process took about 6 weeks.  Auxilum Advantage worked with Cigna, and US Bioservices provided the drugs (they are the sole pharamceutical distributor, is my understanding).

About 6 weeks ago, they did ultrasound to assess calcification (very minor).  Also measured blood flow to penis, which was healthy.  Measured curvature at 80 degrees, upward.  Large placque area.

Administration of xiaflex is quite uncomfortable but not painful.  About 4 hours after injection, started to develop minor bruise.  Now, about 8 hours after, appearance is very bruised, and it feels like it.  This is what the doc told me to expect.  And a sign that the right things are happening regarding placque breakdown.

Injection 2 / cycle 1 on friday.
Then a session to practice modeling (manipulating penis to further break up placques) on monday.
Then cycle 2 in 6 weeks, etc.

TUCC was part of clinical trials.  Had very good results in trials, and very good results since drug was approved.

Very excited.  I'm 46 years old, have suffered from Peyronies for 5 years.  I want my pecker back.

(I took a pic, for the record, but can't figure out how to include.)

[RoyHobbs]

Are there any residents of California who have been approved and begun Xiaflex injections? If so what part of the state, when did your Dr. Submit the paperwork to Auxilium and the insurance companies and how long did the process take?

Dr. Gelbard's office in Burbank submitted my paperwork on Feb 12 or the Monday after. I'm nearing three months and the Dr.'s office tells me it's still pending. Their reasoning is that one rep in southern California is handling hundreds of cases. I'm happy to hear some guys in the forum are getting approval in as little as three weeks. But I m frustrated my process is taking so long.

[james1947]

Colorado

Thanks for the update and keep updating us.
I merged your topic with this one that all the Xiaflex experience will be concentrated in one place.
Wish you very good outcome.

James

[Niklas]

Has anyone had Xiaflex with the plack/scar being located on the underside of the shaft?
I have a string-like scar 1 millimeter from the urethra and therefore probably not a Xiaflex candidate.

[user of no names]

Anyone see my question regarding injections on reply #527 besides loyalty?  Thanks for the response though.  I thought about starting a new thread but they seem to get merged and lost here.

thanks jesse

[PMRT]

I continue to post because I think I am probably one of the first to be this far along in Xia Flex treatments.  Again, my doctor participated in the study trials with 13 patients.   I am near Boston.

Tomorrow marks two weeks since the end of my second weekly session with Xia flex so I am half way through.  As mentioned in my last post the modeling was quite rigorous and I swelled and bruised a lot.  I got off my feet within a few hours of the modeling and spent the day on the couch icing it on and off for several hours which helped with the swelling and bruising.  However now two weeks later I still have a lump that is best described as the top 25% of a golf ball on the top of the shaft, slightly off center to the right that isn't going down.  It is not particularly painful but it can be a bit sore at times.  It is a bit smaller in the morning and larger at night obviously due to blood pressure, gravity, etc.   The size and the fact that it is not going down was very concerning to me.  Since I am going away for a couple of weeks starting next week I decided to see the doctor yesterday.  He examine me thoroughly and said it was perfectly normal.  He has 42 men going through Xia Flex treatments right now and several have lumps larger than mine.  He said the lump would probably be there a long time....perhaps even through the next treatment but with time it will go away.

And no, I don't see any marked improvement in curvature but with a lump like this A) erections aren't exactly what I want right now and B) one wouldn't expect it to straighten with a big lump anyway.  However it does seem as though the massive plaque scar is now soft sponge....or something akin to that.  It is hard to tell because the lump is big and pressing into it causes a pinching-type pain. The doctor says "let it be".  

I wish he had told me about this lump possibility so I would not have experienced such angst.....again, another reason for my post. Also, some posts say their doctors are against cold packs.  I asked my doctor about that and he said he could see why some doctors would say that....medicine should be within certain temperature ranges.  However he does not see a problem with the Xia Flex.  Still, there is a national conference next week he is attending and he plans to bring up the question.  I told him to leave my last name off his Power Point Slides.  

Down below someone posted pictures of Xia flex gone wrong.....or something like that.  I refuse to look at those pictures and I suggest you don't either. What good does it serve?  Either we stay bent or we take the chance, right?   email me at paulmrt57@aol.com if you wish.  I will try to answer.    

[james1947]

PMRT

Thanks for the update. If other forum members will have similar problems at least they will now that they are not alone.
I suppose also that the doctor know what he is saying as you have written that he had 13 people in the trial and now 42 man.
We all hope that this treatment will give back length, girth, solve ED problems and straiten out the curves and dents.
Regarding the pictures showing that something gone wrong, I think it is good that people posted them, we can know that not everything is perfect.
Keep updated us, I wish you excellent results from Xiaflex.

James

[PMRT]

To Loyalty.
I apparently did not work this web site correctly and did nothing more than return your original comments.  My doctor does not have me apply pressure to the injection site but immediately wraps the entire length of the shaft tightly in stretch gauze and an ace bandage for no less than 3 hours.  Would you be so kind as to email me at paulmrt57@gmail.com?  Thanks in advance.  

[Timdvm]

    When I received my first series of injections the doctor didn't apply pressure or wrap the shaft.   The first injection I had severe swelling and bruising which he said was normal.  It was almost gone by my second injection 4 days later.   My second injection resulted in minimal swelling and bruising.
  I will have to ask him why he doesn't wrap the shaft afterward.  I am seeing some improvement.   The plaque at the injection site is gone - I can't wait to start the second series on the remaining area of plaque and see what happens.        

[pintor]

In my first series of Xiaflex injections I felt nothing, no bruising and no swelling.  Also little or no improvement, although plaque appeared to be softer.  This week started second series.  First injection had small bruise, but most notable the next dayI felt plaque beginning to break up, no longer a solid mass.   Second injection resulted in significant bruising and swelling, but not very painful.  I think this stuff is working.  I will report progress as noted.  Good luck to all.

[Knight]

Most of these updates are very encouraging, although a little frightening with the bruising, swelling and remodeling! Yikes!

Thank you all for sharing and all the best to all of you!

[pintor]

My Doc actually told me that the guys in clinical trial with most bruising actually showed greatest improvement.  No pain no gain I guess.  My swelling is practically gone after 24 hours but purpulish bruise covering the area above the plaque site.  I am not concerned at this point but if it gets worse I might be.  This is an anticipated side effect.

[james1947]

Wish to all the Xiaflex guys excellent outcome and keep updating us.
Can update us how the results are regarding ED?
Also my question remain what is helping most:
The stretching/modeling or the injected Xiaflex itself.
We will never know I suppose.

James

[Colorado]

9 days after completing first set of injections for me.  No improvement in erectile quality or curvature yet.  Disappointed, but still a long way to go, I guess.

[oldgreyguy]

Am currently in line with Dr. Lue for Xiaflex treatment -- and have been pre-approved through insurance (his office seemed to be in a rush to "get me in now!" and I had to back them off so that I could talk about it beforehand).  I am seeking others who have already had this treatment (actual injections) specifically with Dr. Lue -- so have you, and if yes, what have been your results so far?  I see him tomorrow for a lengthy discussion on what I can expect, and what all is involved.

[james1947]

I don't know about any forum member that made Xiaflex injections with Dr. Lue but:
*He is one of the best Peyronies specialist so you are in good hands.
*You have time to read this topic (11 pages) until tomorrow to understand what and how Xiaflex helped other forum members.

James

[oldgreyguy]

Just back from my visit with Dr. Lue (just a visit, not the actual procedure yet, not by a long shot) and a few things I should point out (which I also pointed out to him, and he appreciated):

1)  I have an undergrad degree in molecular biophysics and biochemistry from Yale, so am NOT a medical doctor, but was well qualified to become one if I chose that path, and as such, was able to understand to a much greater degree the science behind Xiaflex
2)  I am NOT in my 20s or 30s, and so my desire (pun intended) to get this fixed is not as strong as it would be in that demographic, and
3)  My wife of 19 years died suddenly without any warnings ~ 3 1/2 months ago, so I have more pressing things to attend to, physically and mentally, than this at this exact moment in time -- and can afford to wait, having been pre-approved through insurance, so it's totally up to me as to when to have this

That said, I would rather (selfishly) have others go ahead of me and allow folks like Lue "practice their craft" and evolve the entire protocol surrounding this procedure (Do we use wraps or not?  Do we use cold packs or not?...you get the picture, as they will continue to learn what details add value, and which do not, or detract) -- so feel free to step ahead of me in the line.

Lue shared with me his technique:  use small amounts of the collagenase, injected with the smallest needle that won't break off (which is a good thing, I think) to essentially "chip away" at the plaque body, rather than try to cut through it -- which makes sense, "less is more", "err on the side of caution", "take incremental steps" -- and then use modeling (aka physical manipulation) to "snap" through the plaque body at the weakened areas, much like (my analogy) one finds it easier (and more precise) to tear through a piece of paper that has been pre-perforated.

He confirmed that he is injecting into what I would describe as a black box (he knows with general intelligence where the plaque is based on ultrasound, etc., but can't get real time feedback or visual confirmation that the needle is exactly where he wants it to be) -- which also lends credence to the use of small amounts.

I have read elsewhere that the type of collagen plaque that forms in the penis is biochemically different from more general, naturally expected collagen in the human body, and that the collagenase that is Xiaflex targets only that type of collagen, so if true, that would be another safeguard.

I intend to bring up to him through e-mail follow-up whether there is any work being done to "robotize" the technique of injection, since that appears to be the Achilles heel (again, pun intended) of this procedure -- the need to take your best shot (another pun) and jab where you think the plaque body is.

With a robot, one could conceivably chemically induce (and sustain for some time) an erection, strap the penis in a fixed, immobile harness, use real-time ultrasound/imaging with external markers to calibrate for on-going, minute movement, and see the target in real-time, instructing the robot to insert the needle along a programmed path precisely to the target area and deliver the goods in a desired sequence.

After all, they do that for hair transplants now, why not drugs?

Old Grey Guy

[james1947]

oldgreyguy

Thank you for your deep inside regarding Xiaflex.
It may help others to decide if, when ad from whom to get this treatment.

James

[Timdvm]

Hey everyone
  I started my second round of Xiaflex injections today.   My second of the series is on Friday.   Not nearly as much bruising or swelling this time and I am 9 hours post injection.  The pain during the injection was intense.  
  I have seen some reduction in my curve and the hour glass shape since starting 6 weeks ago.   My erections seem firmer and I am happy with things so far.   I am just hoping to regain some of what I lost and had before getting this awful disease.     I am still taking anti oxidants, omega three fatty acids, acetyl-L-carnitine and neprinol every day.   The doctor told me to stop the stretching and straightening exercises for until a few days after the second injection  

[pintor]

Now in process of scheduling my third round of injections.  I previously mentioned swelling and bruising after 2nd injection of second round.  Swelling was gone in 1 to 2 days.  Bruising went from dark purple at day 2 and gradually faded to red and was gone by day 7.  Like Timdvm I believe I am seeing some reduction in my plaque, hourglassing, and angle of curvature.  Good luck to all with their treatment!

[RoyHobbs]

Question for all the guys here-

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?

Thanks,

Roy

[CVA California]

My age is 64 male
Dr. Lue at UCSF has scheduled me for 4 sessions to be treated by Xiaflex starting in July 2014
Peyronies Disease
Tried Pentoxifylline Tabs 400mg for a year or more
Have insurance
Not dealing with any of the psychological effects but there are some
I am married but  no intimacy
Reading the post seems to make me uncertain of moving ahead with this process