5 months after completing Xiaflex

[Snydosaurus]

Well, after 5 months since my last round of injections with Xiaflex, i did see a small improvement in curvature.  Unfortunately, i won't be getting the final doppler to obtain usable metrics, due to the utter incompetence of the staff at Tulane. I am thankful I had the opportunity to try, and Auxillum worked with UHC and my provider to insure every opportunity for success.  

I haven't had intercourse in several months, wife has lost interest, and frankly the experience of having to keep "putting it back in" completely takes away what was left of my manhood.  Psychotherapy is a complete waste of money IMO.  For now, I'm learning to just deal with it.  If this marriage ends, there will be no more for me.  No dating, anything. I couldn't possibly lead a woman on just to reveal this defect. That wouldn't be fair, and it would come off as completely psycho to mention it on first dates.

You learn that the less you use it, the more you find other hobbies and interests to fill the void. You begin to see how much emphasis on sex is placed in our western society.  Being out of the game gives you a heightened awareness of these things.

I don't mean to be a downer, but make sure you temper your expectations before anticipating miracles.  I hope others experience benefits from this drug, I really do.  Especially younger men. At close to 50, my useful sexual existence was running out anyway.  

[NeoV]

The problem you describe is the fundamental one we all here are battling. How can we date someone now, when and how do we reveal it, how much does it matter etc. Most of us will spend our lives asking this question, but it's strangely not that different than the type of questions men ask all their lives without the disease. Finding joy in things other than sex is a big deal, but I'd say this is the right path to take for a fulfilling life regardless.

Thanks for the report on Xiaflex. Since the beginning we have all had low low expectations here, since before the drug came out due to poor results on dupuytren's and some bad comments and outcomes that followed it. There was a small surge of hope towards the drug, probably due to an increase in its usage and probably because it has helped some quite a bit.

At old age (You're still younger than many on these boards), things probably get more complicated. If my Peyronie's gets worse again after 60 I will surely be getting an implant, and I will enjoy it. Ironically the damn implant is cheaper than Xiaflex.

[melting]

Yeah it sucks. No question.

I dont know for what its worth but I had to chuckle at least a bit at the wording of your last sentence.

Its for sure not all that there is and doesnt even define us as a man, espacially spiritualy. No one is the fake guy in TV everyone wants to be anyway.
I often think there are worse problems but what it makes so difficult is the change cause you were used to be that way and enjoyed it. Suddenly its a struggle.

I had some Improvements in life quality and the tissue(clear head better decisions) after I accepted it.

Anyway thanks for your report.

[james1947]

Snydosaurus

The only thing I understand from your post is that you are very disappointed and down.
Can you give us some more information regarding your Peyronies?
Like what are your symptoms, how long you have Peyronies, do you have ED or not, etc'

James

[hope4all]

Snydosaurus:

I have felt all these things and completely understand your feelings.  I had a very good sexual life before this and really felt like I was hitting my stride, feeling more confident with age and experience. I was 41 when it hit, now I'm 47.  During this time I've been promoted twice and have really enjoyed my work life much more than before this disease.  I think I had sex on the brain before Peyronies Disease, but this made me stop and reevaluate things a bit.  Everyone is different and has different experiences.

I also understand your frustration with university medical systems, a complete nightmare usually. I've been to Johns Hopkins in Baltimore when I lived in that area of the country and now I'm in South Florida dealing with U of Miami Medical system.  Yes, they have state of the art equipment and usually have good doctors..but they are the most bloated, bureaucratic medical facilities I've ever seen. Trying to get an appointment is like trying to get a reservation at the hottest restaurant in NYC, "we have something in 5 months".  The righthand doesn't talk to the lefthand...That is probably why my doctor doesn't do the in office modeling after the 2nd shot, it would take up another appointment slot.

I couldn't even get an appointment for the required doppler at U of Miami with the doctor.  The meds were approved and shipped way before that even happened, probably because I showed a picture to the doc of my curvature.  I got my doppler from a completely different doctor in another office 2 months after my initial visit! I was thinking of switching to the 2nd doctor but the meds were bought and paid for and sitting at UM so I decided to stay with the original doctor.

I'm sorry you didn't get the results you were hoping for.

 

[Knight]

Syndosaurus

I'm sorry your results weren't better. I have been told about a 1/3 have great results, 1/3 have ok results and 1/3 sadly see no results. At the 1/2 way point I am not seeing good results yet either, but the GOOD reports coming in since the flood gates opened on Xiaflex seem to be far outweighing the negative reports from everything I'm reading.

I am encouraged by your positive attitude in finding other joys and ways to fill your time. But I admit I do question your decicsion to give up after putting up such a good battle? The Xiaflex journey isn't an easy road and we all know what it's like to live a sexually deprived life with a crippled sexual organ. There are many positive testimonies from men who have gone before us with grafting and/or an implant. Most say the only regret is that they waited so long before just getting it done.

There is always hope my friend, and you are still very young at 50.

Don't give up.

[pointedly]

Hi All,

I would like to preface anything I say here by stating a few things up front:

1.  There is no "one size fits all" for alleviating the effects of Peyronies Disease.
2.  I have received a lot of great advice here.
3.  I have taken that advice and tried to apply something that I feel might work for ME (see #1)
4.  Try to stay positive!!!

I have been seeing Dr. Landon Trost at the Mayo Clinic in Rochester, MN.  I cannot imagine a more humble, dedicated and knowledgeable doctor is out there, but I'm sure there is.  He has been a godsend for me.

On my first visit to Mayo, I was diagnosed with a 69 degree upward curve.  After 6 Xiaflex injections, albeit not professionally measured, I am now at about 30 degrees.  I have had (by an admittedly inaccurate guesstimation) close to 50 injections.  The Verapimil yielded no improvement of curvature, but may have kept my plaques from becoming calcified.  That's the conundrum of Peyronies Disease - see #1 above.

I can tell you one thing about my dealings with Dr. Trost - he is very dedicated and is UP TO DATE on results regarding Xiaflex!  He asks me very specific questions about my perceptions of improvement BEFORE he administers that day's injections and offers his observations about where he sees his patients' improvements and what they have done to get there.  Although I haven't asked him, I feel that Dr. Trost views the Xiaflex injections as an extended Phase Trial and I think he is correct:  Keep in mind that what is being posted on this forum are VERY EARLY RESULTS in the administration of this drug...

Dr. Trost's Emphasis

He has been VERY adamant that the most improvement he has seen so far is with his patients who are very aggressive with self-modeling.  He also told me just prior to my 6th injection that many of his patients see no improvement for the first 3 rounds of injections and then see dramatic improvement over the last 3 or 4 individual injections.  Can I put on a cheerleader uniform here?  Hang in there guys!!!

What has worked for me

Disclaimer:  See #1 above

I have been bringing my traction device down to Mayo and as soon as I exit the parking ramp (I damn near run to the ramp), I find a secluded place and apply traction.  Dr. Trost has emphasized that the drug is most active in the first 30-45 minutes, post injection.  I may very well wear sweatpants to my last two injection appointments and apply traction before leaving his office...

I applied traction after my 5th injection and used it the entire drive home (1.5 hours) and also applied that night for another hour.  I have added a twist to the traction that seems to have worked for me:  When I look at my penis in my traction device, it seems to still have a slight upward curve.  What I have added to my traction sessions is to place a tongue depressor under my penis, near the injection site, to bend it against the plaque.

The next morning, I applied it after the injection and it wasn't easy:  I told myself to SUCK IT UP on the pain - this is my golden opportunity for improvement.  An hour towards home, I felt a perceptible tear and a loosening of the traction device.  I looked down and the device hadn't slipped off, the tongue depressor was still in place, so I thought, "Success!"

And I was right.  When I got home, I noticed a large lump at the injection site and my assumption is that that may be dislodged, "lumped up" plaque.  When I had an erection post swelling, I noticed a dramatic improvement!

Be aggressive with modeling and talk to your uro about how aggressive he wants you to be.  If he doesn't know, don't be afraid to tell him about this forum and ask him if he would mind calling Dr. Trost at Mayo about the results he has seen.  By talking about this terrible disease in this forum and sharing information, we can all help in figuring out the best way to tackle its effects...

Pointedly

[nemo]

Excellent post, pointedly - thanks for that, and congratulations on your success!

Nemo

[user of no names]

Pointedly your post may be the reason I finally get the injections.  I have been following other members reactions to the medication for some time, including knights recent endeavors.  I also live in minnetonka mn and saw Dr Trost in march of 2014.  My insurance initially approved the injections but I have been hesitant to get them done.  Dr Trost told me to take a wait and see approach but I was also concerned with his chemical knife analogy where he injects around the plaque and not into it.  This seems to have change recently.  I am currently 34 years old with no girlfriend or intercourse for 14 years.  I got peyronies at the age of 14 and then another injury at 21 so this has been a crappy  journey.  Other recent health issues have made life more difficult but I still hold hope.  The world and God work in weird ways that I don't fully understand but maybe someone is listening above me.

[skunkworks]

Great post pointedly, it seems like more emphasis is needed on modelling post injection.

[Knight]

Pointedly - Thank you for the excellent post and the great ideas! I will be bring my traction device along with me on my next trip to Mayo to see Dr. Trost and I will be strapping it on in the parking ramp!

Can you tell me how much tension you are applying with the device? These tension indicators don't  work, and I've just been cranking it up as much as I think I can stand to the point of bruising myself.

Looking forward to round 3 and looking for my cheerleading uniform!

[Ive]

Just be careful out there boys:

I know they are protecting themselves but Auxilium put out a big warning (with stats to back it up):

WARNING: CORPORAL RUPTURE (PENILE FRACTURE) OR OTHER SERIOUS PENILE INJURY IN THE TREATMENT OF PEYRONIE'S DISEASE

Over vigorous modelling and VED can be a major contributor to this. My urologist describes his modelling technique as 'gentle'.

Also, with regard to injecting near to the plaque, but not actually in it, surprises me because Auxilium state: XIAFLEX should be injected only into the Peyronie's plaque and care should be taken to avoid injecting into the urethra, nerves, blood vessels, corpora cavernosa or other collagen‑containing structures of the penis. Injection of XIAFLEX into collagen‑containing structures such as the corpora cavernosa of the penis may result in damage to those structures and possible injury such as corporal rupture (penile fracture).  

[pointedly]

@Knight - Personally, I would not add length to the device (more stretching) at the time of injection.  Dr. Trost has instructed me to add the smallest of the additional extensions at a rate of one per week.  On my device, the smallest I have are about 3/8" each.  Between rounds of injections, I add about 3/8" every two weeks, a little more conservative than he recommends, so I have built up to the new length by the time the next injection is made.

A few days after the injections, when the swelling has subsided, I use hot packs prior to applying traction.  This is nothing more than a hot wash cloth, folded the long way into thirds and then wrapped around the penis.  I do this 2-3 times for about 30 seconds each.

I got this idea from Old Man when he was telling me about his VED protocol.  It made sense.  I am 54 and in the old days, we were always instructed to do stretching exercises before warming up the muscles by jogging.  Granted this was for running, athletics, etc.., but a muscle is a muscle is a muscle.

Physical therapists, kinesiologists and other experts have shifted that way of thinking.  Now it's the opposite; we warm up the muscles first and then stretch.  The hot packs are my way of warming things up before the stretch...

@Ive - I have to plead ignorance on the rupture issue that you bring up.  Part of Dr. Trost's instruction have been no intercourse for 4 weeks after the injection.  I believe the corporeal ruptures that occurred during the Xiaflex trials were due to a couple of the subjects immediately having intercourse post injection.  I would guess a rupture is more likely if the penis is bent during intercourse with a partner than if it is receiving a steady pull that only one party has control of?

[Ive]

I like the idea of hot packs, pointedly. I love hot baths and have always made sure I do my VED/modelling before for fear of the tissue being too delicate after hot water. I will think again.

Not sure about the 35-40 minutes after injection, but in my opinion Dr Trost is right about Xiaflex being at its most effective straight after application. My urologist in the UK would share this opinion but doesn't have the data yet to prove it. It makes absolute sense though. Collagenase is an enzyme, and it is a scientific fact that almost all enzymes have a short effective life. That is one of their points. They would do damage to the wrong places if they worked for too long (e.g. digestive enzymes).

I was just giving a slight warning to those of us who might be tempted to go mad with excessive and too rough VED/modelling which would do further damage. It has been known even without Xiaflex.

Dr Torst's sex ban for a month is double what my urologist and Auxilium demand which is two weeks.

I am exactly the same age as you and currently on my third cycle so it will be interesting to compare protocol and results. I came into this with a clear head that any improvement would be good so happy to chat through things.

[addboy]

Have you considered getting an implant? It has completely changed my life. I anticipated negative results from Xiaflex due to my situation, venous leakage and hourglass, so I went with the implant.  My sex drive and confidence has increased. I use to feel ashamed for shooting down my wife when she wanted to have sex. Now she shoots me down and calls me a pain in the ass.

[Knight]

Thank you for your post addboy!

It is a message of hope for all.

Knight55387