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tonyode

I am through 3 rounds, 6 total injections. After round 2, my doc did an evaluation from the baseline data. He induced erection and measured my curve. I started with a 55 degree curve with a fairly significant indentation. At the halfway point, I had a 20-25 degree improvement! I am now down to 35-30 degree bend. But I feel it is even better now. My indentation is much better as well! 2 more injections to go!  
Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bubba dawg

Proves Xiaflex works for many. If you do it right and stick with it. No pun intended lol. Congrats Tony!
5 Rounds of Xiaflex. Good results.

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tonyode

I am finished after 6 injections....55 degree curve to less than 10%!! Doc didn't think it was necessary to continue and I agree!! GREAT SUCCESS!!  
Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bubba dawg

5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

TonySa

Wow, very impressive.  During xiaflex we're you doing any other treatments such as pentox, VED. Or traction.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Lester7


tonyode

TonySa...I was on pentox for about 3 months, also took a boat load of supplements. No VED or Traction. Just hand modeling. As mentioned, my curve is hardly noticeable. But I do have narrowing around where the plaque is/was.  
Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bleh

45 degree lateral curve, stable long-term
3 series of 2 shots about 6-8 weeks apart each round of 2
Last shot completed in early May this year
No improvement whatsoever

I did the exercises religiously and correctly, etc.; had very significant bruising after each shot, and once had a hematoma that was absolutely incredibly painful and sudden when it happened.  Extremely scary, as I thought I had a tube rupture.  Took weeks to get rid of the blood/bruising.

My urologist said he sees it work really well for about 1/3 of patients, 1/3 not so well, and 1/3 not at all.
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Peyronies29

I'm 29 years old. Just ended my 2nd round of injections. I had a significant bend, (definitely more than 60 degrees). I ordered and plan on using RestoreX penile traction device and a VED (vacuum erection device). I plan on using both when they arrive (10 days after injection). I have no idea how much length I've lost as the bend is so significant, but I wouldn't say too much. My Dr.'s plan from the beginning was 2 rounds of Xiaflex, then surgery. I am nervous about the loss in length/girth I have heard it can be significant. After injections I am pretty much in recovery for a solid week with pain and bruising/swelling. I have two plaques one larger than the other (about double in size). Not to sound ridiculous, but I really love my penis and hope it returns to how it was before. I can maintain erections but cannot have sex as erections are still painful (and I'm deathly afraid of penile fracture, its really fragile after injections), but much less after the 2nd round of injections. I haven't noticed much of a difference in the curvature (it bends directly up) but in pictures, my urologist seems to think it has slightly improved.

For those who used either of these devices, how often and how long did you use either?

Has anyone had the surgery? Wondering about scarring and recovery?

Advice to those starting Xiaflex: Get on your insurance company well in advanced and start working on the next round of injections as soon as you get the first. My insurance requires a prior authorization and there was a lot of back and forth between the pharmacy (US Biomed Services, who are great and helpful in pushing authorizations through) and my doctors office and insurance company. I spent hours on the phone rushing things along at the last minute, even had to push back injection appointment by one day (one less recovery day in between). I have a low pain tolerance and take pain meds prior to and immediately following injections (oxycodone 5 mg).

I'll try to post updates, this forum was super helpful for me when I had questions first starting. The threads about sex/masturbation will make you realize the no sex rule after injections are for real.
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Harry58

My Experience
• I am 61 years Old
• In July 2018 my erection changed from normal to almost 70 degrees pointing up within 1 week.
• I saw the URO in Sep 2018
• Waited to June 2019 to start xiaflex injections

Round 1 shots 1 and 2 – June 14th  & 17th
• Painful, but wanting to be fixed out weighed the pain.
• Very bruised and uncomfortable
• Results: no change in curve

Round 2 Shots 1 and 2 – Aug 5th and 7th
• Painful, again wanting to be fixed out weighed the pain.
• Very bruised and uncomfortable
• Results: no change in curve

Round 3 Shots 1 and 2 – Sep 30th and Oct 2nd
• Painful, again wanting to be fixed out weighed the pain.
• Very bruised and uncomfortable
• Results: no change in curve (starting to feel very disappointed)

Round 4 Shots 1 and 2 - Nov 25th and 27th
NOTE: Doctor change approach, He had the nurse hold my penis stretched out and doctor pinched and held plague in place and injected directly into plague. (I'm not sure how he was doing it before).
• Shot, while painful, it was not as painful as previous experience.
• Bruising not as bad, but still uncomfortable for the next few days
• Moderate improvement

Round 5 shots 1 and 2 - March 4 and March 7 - 2020
Note: Doctor used the same approach of having the nurse hold my penis stretched out and while he pinched and held plague in place and injected directly into plague.  
• Shot, while painful, it was not as painful as first 3 rounds.
• Bruising not as bad, but still uncomfortable for the next few days
• Enough improvement that I am not taking the next round at this time. And
• Will follow-up with URO in 6 months.

Notes:  
• I have lost length and girth, hard to tell because I was never was one to measure (always confident about my size).
• Considering VED to regain girth, but worried about causing damage, still investigating.
• I am using sildenafil citrate (i.e. Viagra) to help maintain Rigidity during sex.


Shane43

An update from my posts on other threads. After 3 series of Xiaflex injections, I decided to wait on a 4th series of injections due to the increasing complications with each series of injections (bruising was worse, pain lingering longer each time, but no where near the hematoma problems some have had). After two months the plaque seems the same size, but the indentations continue to get smaller and I finally have enough rigidity at the base of the penis to have sex, albeit pretty carefully. So, perhaps this might have healed on its own, but I suspect it is the Xiaflex, perhaps in combination with 25 mg Cialis and Co-Q10 and vitamin E. I have not used traction or Vacuum, and only have done a little manual "modeling" as my urologist didn't think a few minutes of modeling each day would help. I did get myself hard each day for at least 30 minutes (when my penis was no longer hurting from Xiaflex injection). I am fortunate to have a wife who enjoyed helping with that part of my "self-therapy" :). So, update is Xiaflex seems to be working and I will wait longer to see if I get the 4th series or not.
62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No ED. 3 rounds Xiaflex decreased plaque/indent/hinge/bend. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.

Manta

Quote from: Lucketts on June 16, 2016, 05:26:59 PM

Again..would you be kind enough to share the name of your doctor?  Thanks.

Just had my second shot of Xiaflex at 57 years old , the first went smoothly, the second one got my groin are above my penis purple with inflammation and swelling- and my penis has shrank more- I was told it is ok.
I started with symptoms a year ago and learned about Peyronies Disease,  i lost about 3 inches or more and also girt and have a 30 percent upward curvature.
I am really scared about it, hope it works.

Dr Jacques P Ganem,  in Charlotte NC.
Any suggestions, advise - encouragement is appreciated.
Thanks
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GaussRifle

I am noticing after my xiaflex round 1 - 1st shot ( 1 week ago ) that I am able to stretch less on my restore X traction device. Is this normal ? I suspect after xiaflex the penis welling and inflammation doesn't let it expand as much and will normalize with time. I expect to see length Improvements not shrinkage.
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Shane43

I only did manual modeling, but I did not notice any loss in length after rounds 1-3 of Xiaflex. I had lost about 1.5 inches due to plaque at base of penis. During Xiaflex injection period I saw not change. Now, 1 year after my first injection, I have anywhere from 0.5 - 1.0 inches back, depending on the erection.
62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No ED. 3 rounds Xiaflex decreased plaque/indent/hinge/bend. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.

Clutch

63 years old, 2 years since onset, 80° upward curve. Carefully selected urologist who trains others for xiaflex Peyronie's treatment and 12 shots of xiaflex later, no improvement. Discontinued second series because of risk/reward. Beginning Restorex on my own. Have no idea how it started and use Viagra for sex. Probably ED is from awkwardness, I have a very patient wife.
Came out of nowhere, no trauma, 3/2019, 60 degrees upward, no pain with sex. 62 years old, no other conditions. Gainswave 2019, Dr. Adcox, $2500 three treatments followed by PRP, no change. Penomet vac no help for now, Xiaflex this month, we'll see.

BrettC

I wanted to offer up my results from 1 complete round (8 shots of Xiaflex)  

I am in Houston, and I went to see Dr. Mohit Khera.  
He told me in an initial consult not to expect much more than a 20 degree improvement.  He was right on the money.  

I started with a 60-65 degree curve (they factor in error here) upwards.  
After 4 rounds of 2 shots each for one complete cycle of Xiaflex treatments I am at 40-45 degree bend upwards.  

Definitely an improvement, but still a bit disheartening.  I feel like I lost a lot of length with the bend, and that is not back yet.  I am taking a break until October.  He told me to see if this angle could work for me or not.  So I will give it the old college try.  My options after that are either another full round to hopefully be at 30 degrees or less .... or... have plication surgery to be straight, but risk more shortening.  

52 years old
Diagnosed 5 years ago with an upward curve of 60-65 degrees.
Completed one full round of treatments with Xiaflex (8 injections)  Measured curve 40-45 degrees after that
Using Restorex and took oral medications as well (Pentox Cials)

roguerider73

This is my experience with Xiaflex.

I live in Grants Pass Oregon and went to Dr. Kadi-Ann Bryan. She is an experienced Xiaflex administrator.

This all started 2 years ago with a 48 degree bend to the right, mid shaft. There was a large (nickel size) calcified mass.
I went to the Urologist and they diagnosed Peyronie's and suggest Xiaflex treatments. 2 weeks later we started treatments.

I went through 5 rounds over 1 1/2 years, with the doc directly injecting the calcified mass at different angles.
Each night I did the suggested pulling and tugging.  4 weeks after each treatment, I would see less and less of the degree in bend. I pulled hard enough I could feel the tension in my shaft near the deposit, to the point it was starting to hurt.

Several times while doing my nightly tugging, I heard a loud pop, and felt the calcium deposit break and move. 2 times I ended up with a severe hematoma (scared the crud out of me) and 1 trip to the ER over it.

After the 5th round, the doc said I couldn't have any more per the regulations of the drug company. There was still about 10 degree curve to the right and now pointed up as well. I also had a second calcium build-up starting. The Doc said I had to wait for it to harden, then they could treat it as a second occurence.

After the 5th round, I began adding 2 tbls. of Briggs Apple Cider vinegar to my morning smoothies.  After 6 months (and 6 bottles of vinegar later), all the remaining hard spots where gone.  The bend to the right is gone. I still curve up, but in a good way, hits my husbands prostate with every thrust and he loves it.

I did loose about 1/2 inch in length, but have gained most of that back with nightly tugging.  There is some indentation at the site of the original calcium deposit, but that has reduced over time and I feel it will fully recover in a year or so.

I highly recommend Xiaflex treatments if you have excellent insurance. I ended up paying $1000 out of packet for the entire treatment. But do add 2 tbls. vinegar to your daily diet and you will have even better results.  
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Ethan

Quote from: badjojo1961 on April 04, 2016, 04:46:26 PM
I have had only 2 xiaflex injections thus far. I started with a 30 degree bend right below the glans or head of my penis. I have noticed a reduction in the curve-probably its a 23 degree bend now. I have also been using the Phallosan stretching device pretty religiously for about a month. I have regained a little more that 1/4 inch back. My initial erect length before peyronies was so close to 8" i will say 8. I am barely over 6" now. I had never measured girth before peyronies but it is 6" now and I hope the Phallosan device can increase that.
It still works and i can perform without pain!! I feel i am one of the lucky ones so far. I have read so many other posts and my prayers are with each of you.
I have a lot of information to share. I hope to continue to get good results

Who was your doctor please?
Peyronies onset #1: AUG-2021: Upward bend 1 inch below glans. Corrected after approx 6 months of VED.

Peyronies onset #2: NOV/DEC-2022: Downward & right bend 1 inch above base. Not corrected by VED.

IwillbeatPD

Hey everyone!

What's the general consensus on Xiaflex in 2022? Read this entire thread and it actually seems incredibly promising. Keep in mind, these are the people who took the time to log back on here to share their experience. I would imagine there's tons who did Xiaflex and were cured and never returned here. Seems risks are low with it too, especially compared to verapamil.

Thoughts?
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

richestorags

Quote from: IwillbeatPD on November 30, 2022, 01:40:25 AM
Hey everyone!

What's the general consensus on Xiaflex in 2022? Read this entire thread and it actually seems incredibly promising. Keep in mind, these are the people who took the time to log back on here to share their experience. I would imagine there's tons who did Xiaflex and were cured and never returned here. Seems risks are low with it too, especially compared to verapamil.

Thoughts?

Howdy: It may be difficult to reach a point where there is consensus on Xiaflex. There are so many variables involved ranging from the nature/severity of Peyronies Disease in the patient to the experience of the urologist in proper administration, modeling and follow-up. I have been using RestoreX coming up on three months now and while there have been length and counterbending gains while using the device, they are not translating into a straighter erect!0n, at least for the time being. I am fortunate to live within driving distance of multiple Peyronie's experts and have an appointment set for January with a doctor who meets all the criteria set forth by Dr. Trost. The difference between a urological generalist and Peyronie's specialist is striking: the physician I am going to see has authored multiple publications on the effectiveness of Xiaflex, modeling, side effects, implants, interferon etc. The patient intake forms contained a four-page Peyronie's questionnaire.  I ain't thrilled about having needles stuck in my (penis) but if it's going to be done, it's going to be done by an expert and not a generalist.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

IwillbeatPD

Have you tried VED? I've had a curve my entire life that didn't affect me, but after using the VED I'm straight as an arrow after-which is crazy to me.

Keep me posted on the Xiaflex injections and how it goes, would love to hear. Completely agree that who injects it is critical.
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

richestorags

Quote from: IwillbeatPD on November 30, 2022, 03:59:19 PM
Have you tried VED? I've had a curve my entire life that didn't affect me, but after using the VED I'm straight as an arrow after-which is crazy to me.

Keep me posted on the Xiaflex injections and how it goes, would love to hear. Completely agree that who injects it is critical.

Howdy: Yes, I have a high end VED. It has helped with girth and rigidity but hasn't done anything in terms of the curve. My wife likes the increase in girth and rigidity so hey, a win is a win!  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Hoppie

 I first noticed slight bend late oct 2020. Had first 2 xiaflex injections June 2022 with a 90 degree bend not a lot of results after first 4 injections. Just had # 5 & 6 injections Dr thinks I will see more results after these have a lot of swelling and bruising after each injection. Still planning on 4 rounds of injections.
58 married,1st symptoms oct 2020,1st set of xiaflex injections June 2022, started Restorex July 1st 2022

Waresident21


�Fellow members of a club that none of us want to be in:
 
My peyronies curve started early 22 from an unknown cause; it gradually moved over 9 months to a stable and aggravating 110 degree upward turn, with the fulcrum of the bend very near the glans / tip of the penis.  
I made an initial contact with a very competent male reproductive health physician in our city regarding Xiaflex - head of practice, well respected surgeon, university affiliated.... But I hate to say that I felt I was just 'in the mill' for the practice and it wasn't even clear whether he would do the injections (vs a resident or other younger doc).  The submissions on this board made it clear to me that this is a procedure that can be ineffective or even damaging if not done by an experienced practitioner; I worry that some top surgeons view injections as a lower end procedure vs surgery.   The penis is by definition designed to absorb tons of blood so is prone to significant swelling... and it's about the last place I want a flesh eating enzyme wandering around aimlessly, especially when you are starting small and have no extra length to donate to science.  
Through this board, I found my way to Dr Landon Trost in Orem, Utah.  Dr Trost was directly involved from the initial consult, conducted each step of the two day initial injection round and was highly available for consult via text post procedure.  He is a bit of a superstar in this specialized world and yet seemed to have ample time for the procedure and pre and post consult (makes me question the '5% of men have Peyronies' statistic).   Not quite sure why he and his practice isn't inundated to a point where he has a multi month waiting list.
Despite the significant upward angle, Dr Trost was encouraging that I could be straightened out - explaining that the more extreme cases actually appeared to have more room for improvement than a lesser curve; not necessarily to straight but to a radically better position.  He also explained that we could do a 'one day after another' procedure - so one round Thursday afternoon and the next Friday morning, which made the salt lake trip quite manageable.  
I purchased RestoreX prior to the visit and started to use it, which was quite helpful given how sensitive one is after the injections (and unwilling to experiment).   I would highly recommend this step - having complete familiarity withRestoreX prior to the procedure.  
First procedure - injection to cause erection, multiple (around 6) shots for numbing ... and then many (15+), short Xiaflex shots (none of which I felt due to the numbing).   I am a shot / pain wimp and it is manageable; I distinctly remember looking at the photographs of rural Utah and British Columbia, trying to ignore the jabs.  It reminded me of a vasectomy and of lasix.  It doesn't hurt as much as it feels WRONG and your body is very much on guard.  There was less use of the ultrasound than I expected; he did scope the plaque with the ultrasound but explained it was more for a study.  He relies on the 'soft erection' he induces to point to where he needs to aim.   My layman's translation is that he was trying to get to the plaque that was causing the curve and not worrying about the rest.
 Following that first procedure - a real savior in my opinion was significant and constant icing (along with ibuprofen).  That said, WRAPPING ... and keeping the wrapping on is the real savior.  Don't mess with taking off the wrap... but assuming you follow that fundamental direction, the icing and ibuprofen are also very helpful.  Dr Trost showed me how to wrap and there is a bit of an art to it to get to the right balance of tight but not too tight and placed in all the right locations.
Second procedure - I went in more nervous; my penis was agitated and sore and I was afraid the pain would be significantly higher.  Surprisingly, the pain was no worse for the numbing shots than the first day, though I have to admit I was jumpier.   After the second round of administration of Xiaflex shots, Dr Trost began the aggressive pulling/ stretching of the penis to attempt to break up the plaque. He detected a slight tear, which I could not feel but appreciated him mentioning.   Then a few seconds later there was a VERY distinct pop.  Dr Trost said 'congratulations' right away, which was probably intended to calm me as it was really unnerving.  It is VERY distinct; I certainly felt it... I almost thought I heard it.   It was a tear of something - with no pain associated (well I was numbed) so I had to agree it was the plaque.   He said that about one in five patients are able to get that tearing on their first visit; perhaps the fact that mine was particularly 'tight' plaque and severe, did make it vulnerable to breakage (vs a pliable plaque?) – this is just supposition.  The numbing was critical in order to allow him to apply the amount of pressure he needed to my already very sore penis, without me coming off the table.
After the second day procedure I went to near 12 straight hours of icing.  There was a steady constant urine leakage.  The penis and ball sack were a deep purple.   It was really awful and seemed like it lasted forever but in reality the injuries did improve over just two weeks.  I had an erection, when the wrap was off, on the third day post treatment.   The coloration of the penis and scrotum was noticeably even darker afterwards and a large swelling formed on the lower half of the shaft.  This setback also slowly improved over the following week.  
I was constantly uncomfortable with very rough sleep for about 7-10 days.   It feels like you are not going to heal.  The midnight erections from cialis, while the penis was wrapped, was actually the worst pain I felt though the whole experience; the penis glans felt and looked like it might explode.  I also had blisters that formed at the top of the penis and a raw spot at the bottom of the head ... both of which made RestoreX and hand stretching a challenge.  About 6 days in, I realized that it was really helpful to moisturize the penis and testicles (they were chafing against the wrapping) and I took a day off cialis and RestoreX to allow scabs to form and heal some of the surface tissue damage.  I very much hoped that one day off would not affect the progress toward straightening.    
RestoreX was a quite a challenge.  I believe I am below average and the device even with no expansion seemed just a bit long for me.   My swollen glans made it impossible to clamp without eye watering pain.   Even with my preparation prior to the procedure it took a while to get to where I could really use it as directed (30 minutes daily) without wimping out.  I am still struggling somewhat with it.  I had to put the clamp on a more open setting and use the makeup pads referenced on this site on one side to get the right amount of grip in the clamp.   For some reason, the base of my shaft is very sensitive, like it is being super stretched and is the source of the pain now.   For the first week I was only semi successful and the balance of the time, the pain kicked me out before finishing the full procedure or applying full pressure.
The erection 3 days after the procedure was perhaps 10-20 degrees up and slightly sideways - a huge improvement if sustainable.   The erection now 2-3 weeks later is a gradual 20-30 degrees (my estimate), which to me is remarkable compared to the sharp 110 degrees.... And I just hope to heck is sustainable, ie that it doesn't go back.  I will likely just live with this as it doesn't seem that bad (context is everything).  
I am not posting pictures because I am just not comfortable with the idea.  I saw the post from the other Dr Trost patient with a > 90 degree bend who had similar great results.   I wonder if plaque under more severe tension causes the sharper bend, making it in turn more vulnerable to potential for a tear and then return to normalcy?   Possibly.   The 'pop' was clearly critical in severing the particular plaque that was causing the bent erection.  If that is the case, then what is the role of the Xiaflex?  Presumably to then reduce / eliminate those plaques so that they can't again reconnect distant portions of the penis shaft, preventing expansion.   My suspicion is that 5 years from now the treatment will be focused on controlled fractures via hand traction, with Xiaflex viewed as the preventative that keeps plaques from re bonding.
I can still feel different plaques across the dorsal side of my penis but they don't seem to cause a bend.   It's complicated because I found that before and after the procedure palpating the penis pointed to many different plaques but which are hard to characterize - they seem to change in location and orientation, from flaccid to when erect... and it's similarly confusing post procedure.   I had imagined they would be gone but they seem to still be present, just not causing the deformation  
What then is the role of RestoreX?   I suspect I will need to use RestoreX and hand traction for a couple more months as a preventative to keep the fingers of the plaque from reconnecting distant locations and again preventing shaft extension (and taking cialis as well long term).   Again, this is just a laymans supposition.  There are scattered reports on this board of a moderate bend returning.   Dr. Trost was very consistent in saying that a key point of difference between those who see improvement and those who do not is the hand and restorex traction.  Given his heavy reliance on data, and not the 'guessing' that you see from me in this post, I am going to continue the restorex and hand traction for the next couple months.  
In any event, I would highly recommend a consult with Dr Trost. My situation is definitely unique and these are all very individual cases; my apparent current success is not necessarily a prediction of outcomes for others but I think your best shot is with an expert who is studying the patterns of the disease and the Xiaflex therapy in depth to at least give yourself the best shot at improvement.    Its a moderate hassle getting to salt lake, and Orem, where Dr Trost is, sits another hour south of the airport... but if he is able to fix or lessen the problem and hopefully do so in fewer visits, it's entirely worth the trip.   Right from the start he only would schedule me for two visits, thinking it unlikely a third or fourth would be necessary.  
I apologize for any obvious lack of understanding of this disease and I don't want to create false hope ... but I would also say that many of the early posts from 2015-18 share the difficult experiences of guys who unfortunately were part of the medical community figuring out how to make Xiaflex work.  I was starting to decide to give up on Xiaflex based on some of those very scary authentic reports.   I think the medical community is now at a stage where a small handful of 'super providers' are delivering effective treatment using provider led hand traction and Xiaflex and a very strict procedure regimen.  Over time that number will likely grow as a single regimen becomes commonly accepted but I don't think we are yet at that stage.  So, I would recommend going to one of the [3-4?] nationally recognized experts focused on Peyronies to address your specific case.   I wish you all the best of luck and be sure to post about your experience as your contribution to advancing the learning and experiences of others.  Thanks to Hawk for pioneering this site.
 In gratitude...
 
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danh

Ditto on Waresident21 post. I had a similar experience at Dr. Trost office.
My story started 10 years ago. I had around a 30 degree curve (laterally) and just lived with it. It was very usable. Fast track to 2020 and my curve turned to a bend of 50-60 degrees. Looked very odd. So I wanted to do something. I was leaning towards Plication, but never followed through with it. I had two ultra sounds with two different doctors. I ended up going with Xiaflex injections (one round) in October of 2022 with a Urologist at Emory University in ATL. Seemed the doctor was just following the drug manufacturers old protocol of administering. I did have some type of change. Like maybe a different direction. But, I felt I lost time in the beginning of the process by being too conservative and not being able to get answers from the doctor. I was suppose to go back in Dec. for round two. I never made another appointment in December and instead had a phone consult with Dr. Trost. So, I tossed around and discussed the phone consult with my wife. Eventually I sent the insurance info in, and then made an appointment at MFC for late January 2023 for Xiaflex injection. So glad  did. I sent Dr. Trost more questions while waiting on my appointment. I never felt pressured to go through with the procedure. Just good replies to my questions. And pretty promptly. I flew in one morning and flew out the next afternoon.  Even though I was reluctant and scared, even hoping I didn't make the flight to SLC, I'm glad everything worked out and I went through with it. It was a very pleasant experience. I know that's hard to believe with needles poked in you penis, but it was all pretty easy. MFC is a super nice office. And landscape is beautiful. Very cold in January though. Like 10 degrees outside. So here I am about 10 days out from the last shot. My pain is subsiding more and more each day. The first week was a rough with the pain. Stretching and RestoreX were painful, but I still did it as per the Doctors orders. A couple email to Dr. Trost during that week assured me everything was normal and keep up with the protocol. At the moment I see good results. Like less than 30 degrees and maybe even twenty. Hopefully I can get a little straighter as time goes. Not sure if I'll schedule more shots. There was no pressure from Dr. Trost to do so. I'll see how it goes. Definitely not going to rush to do more. At this time I'm so glad I followed through with the trip to MFC in Orem. I will post my final results after my six week period is up.
age 62. Onset 2010. 30deg to the left
Did ved therapy for 6 mo. Some help. Lived with it.
In 2020, left bend increased 50-60 
Jan 2023 Did some Xiaflex shots w/ Dr. Trost.
Now, slight curve with hourglassing. hardly noticeable.
Pleased with results.

Sebtp1973

@Waresident21 very nice post and very encouraging. I think actually, Trost is the only doctor that I am aware of who is doing these aggressive protocols and getting great improvements like yours. Xiaflex is still relatively new, and the original protocols are just too conservative. I wasn't there from the beginning, but I think in the original trials they were getting dicks turning into purple/black swollen egg plants, so they went with a mild/conservative protocol, which most doctors follow, and which gets hit or miss results. Trost is avoiding the egg plants by wrapping, which took him a while to figure out exactly how to do it - including figuring out the best material for the wrap. Now he can go aggressive without traumatizing your penis (and you when you look at it). He's pumping a lot more xiaflex into the penis than the original protocols, and his traction protocols are sooner and more aggressive.  Go look at some videos on how they use xiaflex to treat our cousin disease of the hands, Dupuytrens contracture. They get instant results the day after injections, because they are not afraid to be aggressive, and pull on the fingers aggressively to release the contracture.

I asked Trost on this board exactly what Xiaflex and traction is doing to improve penis curves. It sounded like no one knows for sure. Part of the wound healing process anywhere on the body is contracture (even in the name Dupuytrens Contracture) which means reducing the size of tissue where the wound was. Xiaflex and traction releases that contraction. It sounds like it is more than just plaque that contributes to the contraction. And by the way, Trost recommends traction long after you get a straitening improvement following xiaflex, so that the contraction doesn't reform.  
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

richestorags


WOW! Thank you for such incredible detail on your experience. My first shots with Dr. Trost are in two weeks and your post has helped set expectations. Best of luck on your journey.  
-Peyronies Disease onsite 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at 20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence

Waresident21

Hello all,

Well I went for my second round of Xiaflex with Dr Trost.   I had a nasty side effect I will describe below - I would still go ahead with the procedure (were I to do it again) and highly recommend Trost given his understanding of this disease and professionalism / availability to deal with complications ... but I also want to describe this so everyone understands another one of the risks, particularly after my optimistic first post.  

Dr Trost assessed that the first round treatment reduced my 110 degree dorsal curve to 30 degrees (I had thought more like 45 degrees).   The first day of round 2 shots was not problematic.  The second day of round 2 shots, one of the near last shots, hit an artery near the base of my penis.  Unfortunately it is a somewhat common and unavoidable risk.   The artery bled into the lower part of the penis and the penis base.   After 15 minutes of pressure on the likely source of bleeding the swelling stopped growing.  The trip home and first two days of recovery felt the same.  Then the blood trapped in the body started to break down.  It is very acidic and causes significant pain; I was completely bedridden for 2.5 weeks.  Never experienced anything like it.   The swelling around the injury has reduced but the actual injury point is still SUBSTANTIALLY swollen 4 weeks after the procedure and might continue to be for another month or two.  Apparently the body just doesn't have the mechanism to transport out the congealed blood.  Stretching etc went out the window.  I am physically at 70% now 4 weeks out and likely will be for another month.   Unfortunately there is NOTHING that can be done to accelerate the healing, other than avoiding things that can make it worse - heat and activity.  

My hope and belief is that this will eventually resolve completely and erections etc will return to normal.  Dr Trost has been very available and has shared this does eventually go away.  Also erections can take a while to return to normal.  I just hope that I do have a little curve improvement at the end of this trial.  

Again, I think in the arc of life I will near forget about these 6-8 weeks so the procedure is worth the risk BUT you should be prepared, in terms of work and family, for some possibility of a rough extended recovery.  

Best to you all.  

 
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Pfract

Hey Resident! Thank you for sharing this with us. Never read about this complication before, but I am glad that you had the support you needed.

Good luck on your recovery from this!  

bperez77

I recently had xiaflex round 1
Stable plaque 4 years
Left bend at 55 percent

1st injection, no bruising, swelling, or pain
2nd injection next day.  Scrotal, mons, and shaft ecchymosis w severe edema.  After 2 weeks when swelling and bruising subsided I noticed a new acute plaque 1 cm inferior to the original.  Has anyone had a similar situation?  I was hoping the was just a hematoma, however as the days go no it's more and more evident it's a new plaque.  Not happy  
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boston

Quote from: Waresident21 on April 14, 2023, 11:41:34 AMHello all,

Well I went for my second round of Xiaflex with Dr Trost.   I had a nasty side effect I will describe below - I would still go ahead with the procedure (were I to do it again) and highly recommend Trost given his understanding of this disease and professionalism / availability to deal with complications ... but I also want to describe this so everyone understands another one of the risks, particularly after my optimistic first post.  

Dr Trost assessed that the first round treatment reduced my 110 degree dorsal curve to 30 degrees (I had thought more like 45 degrees).   The first day of round 2 shots was not problematic.  The second day of round 2 shots, one of the near last shots, hit an artery near the base of my penis.  Unfortunately it is a somewhat common and unavoidable risk.   The artery bled into the lower part of the penis and the penis base.   After 15 minutes of pressure on the likely source of bleeding the swelling stopped growing.  The trip home and first two days of recovery felt the same.  Then the blood trapped in the body started to break down.  It is very acidic and causes significant pain; I was completely bedridden for 2.5 weeks.  Never experienced anything like it.   The swelling around the injury has reduced but the actual injury point is still SUBSTANTIALLY swollen 4 weeks after the procedure and might continue to be for another month or two.  Apparently the body just doesn't have the mechanism to transport out the congealed blood.  Stretching etc went out the window.  I am physically at 70% now 4 weeks out and likely will be for another month.   Unfortunately there is NOTHING that can be done to accelerate the healing, other than avoiding things that can make it worse - heat and activity.  

My hope and belief is that this will eventually resolve completely and erections etc will return to normal.  Dr Trost has been very available and has shared this does eventually go away.  Also erections can take a while to return to normal.  I just hope that I do have a little curve improvement at the end of this trial.  

Again, I think in the arc of life I will near forget about these 6-8 weeks so the procedure is worth the risk BUT you should be prepared, in terms of work and family, for some possibility of a rough extended recovery.  

Best to you all.  


Waresident21, any updates?
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Waresident21

Well, candidly, I am in a different but unimproved situation - Peyronies curve eliminated (awesome), post op pain gone from whatever happened during xiaflex procedure (awesome).... But I have an hourglass at the base of the shaft that creates a signficant hinge / 'bumpy look' to penis from a point that swells on the side  / and significant ed difficulty with creating erection (not awesome).  So I am 9 months post 2nd round xiaflex and still not able to have sex with wife... but now for these new reasons above.  What happened during procedure?:  artery hit?  Muscle or other tissue torn or pulled? Xiaflex reaction?  Body swelling reaction to injections?  Don't know.  Dr Trost has been highly responsive and thus far remains optimistic that the Ed will lessen and basic function will return with the  hourglassing mitigating.  He explains it can take 12-18 months post op with significant curves like mine.  It feels like it has been 2 years... but really 9 months and there is perhaps very very gradual improvement (hope I am not being optimistic).  Deep inside the penis at the base I can perhaps feel a small lump so there might be scar tissue that could resolve and help restore function?  We shall see.  My thought is to wait another 6 months and then go in to see Dr Trost again (that would be at 15 months post op).   Appreciate hearing from anyone else with similar experience.    
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