FORUM XIAFLEX RESULTS (Results only, not a discussion board)

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germanirish

I just finished 6 series of injections... 12 shots.  Can I just say that I hate these shots?  

Originally my penis bent straight up with a 40 degree curve.  After the first 4 series my penis is now curving up and to the right.  The left side of my penis looks and feels back to normal.  My doctor suggested to request another 4 series, which my insurance said yes, and he wanted to focus on the right side.    

The injections are painful but most of it is mind over matter.  My doctor is good at taking the focus off of the shot and talking about things to help me not think about the shot.  I also take a light sedative to help relax.  With most of my shots I had minimal discomfort after the shot but this last round really gave me lots bruising and swelling but after a few days it is almost gone.    

I did not lose and elasticity and my erection feels fuller even with the bend to the right.  Will keep you all posted.

GBinNC

Name: GBinNC
Date: July 2018
Degree of Curvature: 45 degrees to the left
Result: Excellent but not perfect
Number Of Shots: 8 shots (4 rounds)
Doctor: Aaron Lentz, MD (Duke University)
Modeling: Self
Summary: My curvature being to the left and not dorsal made intercourse painful for me and wife. Dr Lentz is an expert in this field and luckily I live in North Carolina close enough to Duke to see him. His method is putting very precise injections directly into the plaques and he moves the needle around thru multiple areas of the plaque during each injection. I'm not gonna lie, that method probably increases the pain dramatically b/c it is essentially multiple injections each visit BUT I think that is also why I had a very good result. I can tell the plaque is now more malleable and not nearly as rigid as original. I had some bruising but not much pain except for during the injections. I had a couple of series where I had one shot on Friday then got the second injection of the series on Monday, that three day "break" made the 2nd injection much less painful than the normal series where got injection on Monday and 2nd injection the next day on Tuesday. Those were painful.  My curvature is probably less than 10 degrees and now is more dorsal. Sex is not painful for me or the wife. Biggest downside is I went from being a thick 7" penis to a thicker 5" penis with some hourglassing right below the head. I did not think it would bother me but it does.  Wife likes the more dorsal curve as the leftward curve was virtually impossible.  I finished my injections 3 months ago and I have my 90 day followup in 2 weeks. I will ask about length issue but I fear from reading other posts that those 2" are history and I should just be happy I'm able to have sex. I highly recommend Dr Lentz and the Duke Urology program.  

New York

Is a curve of 80 degrees worth trying Xialflex treatment or is surgery the only way to go?

TonySa

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.

TonySa

Yes, worth trying but def add traction to the Xiaflex and consider adding additional modalities such as pentox, low dose daily cialis, etc.  if you have severe ED, might as well just get the implant but would also likely require excision and grafting.
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.

webfoot35

I had zero improvement after 7 rounds (14 injections). Started at a 50 degree curvature and I'm still there.

JohnR

Name: John
Date:  10/25/18
Result: little
Number Of Shots: 3 rounds (6 injections) 4th upcoming
Doctor: Brian Christine, Urology Center of AL
Modeling: Self
CED: Occasional, tends to injure me
Summary: 5 months of hell... nothing to really show for it but anger and resentment.
50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...ED issues, major anxiety issues now.

tonyode

Name: Tony
Date : 5/17/19
Results: GREAT!
Number of Shots: 6 total (last two not needed!)
Doctor: Dr. Lawrence Jenkins (Ohio State Univ)
Modeling: Self/Hand
Summary: Started with 55 degree curve, indentation on base/left side.
Results: Eval on 5/15/19....Less than 10 degree curve, barely any indentation.  
Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bleh

Name: Bleh
Date: 5/1/2019
Level of calcification (if any): urologist said one tiny bit of calcification, but otherwise no
Result: Bad
Number Of Shots: 3x2
Doctor:  Charles Wen
Modeling:  Self after training from doctor
Summary: 45 degree lateral curve, long-term stable, no history of injury.  3 rounds of 2 shots, no improvement at all.  Lots of bruising, 1 incredibly sudden and painful episode of hematoma.  I see my doctor next week and do not think I will proceed with the final round of shots.
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P47D

Name: M.
Date: Injections began AUG18, finished APR19
Calcification: none
Results: none...tracked bend angles closely each week, no effect at all
Number of shots: 2 shots 1 day apart for each series, 5 series total, 10 shots in all
Doctor: Several / Orlando Urology
Modeling: self, very consistently, very aggressively, with specific direction from doctor
Summary: trauma induced "Peyronie's", 74 degree pure dorsal vertical curve, stable 2 years prior to beginning treatment. Had lots of bruising/ecchymosis/pain on first 2 series - learned that a full wrap from base of penis to glans for 36 hours prevented all that (for me).  I am now trying Verapamil (3 injections into the plan with no results showing yet...looks like plication is in my future...)
Trauma induced 74 degree vertical dorsal curve in OCT 1916 - after 3 years, success with plication.

Harry58

Name: Harry58
Date: 5/20/2020
Level of calcification (if any): (Not sure what is meant here)
Result: Good
Number Of Shots: 5 sets of 2 – 10 shots
Doctor: Pritchard
Modeling: Self

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.

TonySa

Hi Harry, you said you started at 70 degree curvature...where did you end up that you felt you didn't need any further treatment?  30 degrees or?
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.

johnPD

Name: JohnPD
Date: 6/20/20
Level of calcification (if any): None
Result: Very Good, not perfect, but very satisfied
Number Of Shots: 4 rounds
Doctor: Dr. David Pollifrone
Modeling: Self - 2-3 times per day - plan to continue indefinitely
Summary: My peyronies was trauma induced and was stable by the time I found out what peyronies was and started trying to find treatment.  I have a single plaque near the base of my penis on the top left side, original curves were 30.5 degrees to the left and 34 degrees up.  I also had pain during erections and severe buckling during intercourse.  After 4 rounds of Xiaflex and modeling my curves are now 17.5 degrees to the left and 15.3 degrees up.  Pain during erections is gone and buckling is only a problem in the missionary position at this point.  I also regained all of my length and then some, and gained some girth as well.  My Dr. put me on Cialis to help with nocturnal erections which I believe made a big difference in my results.  In addition, I involved my wife in the whole process which made everything much better.  I would highly recommend the Xiaflex treatment, but find a good Dr. that knows what they are doing.  The treatment sounds worse than it actually is, and the 4 weeks of no sex after the shot goes by pretty quickly then you have a couple of weeks until your next shot.

Update 7/9/2021: I've continued modeling 1-2 times per day which seems to continue to help.  Length and girth continue to increase.  No pain with erection or intercourse now at all.  I've found that using a good cock ring is very helpful with the strength of my erections and eliminates buckling in all positions.  Best rings I have found are Primal Rings (https://primalrings.com).  Curve and hourglass are very minimal and only visible while erect.  I've continued on daily Cialis 5mg to ensure the 'quality' of my erections, as my Dr. puts it, to help minimize the possibility of re-injury.  My wife and I are very happy with the results of the treatment.
Age 52
Peyronies since age 50
Xiaflex treatment success

Dale Macusick

Name: Dale
Date: 09/24/2020
Level of calcification (if any):
Result: Good
Number Of Shots: 2 rounds of 4 shots each round
Doctor:
Modeling:Self
Summary: January 2019 the bend became noticeable.  After several months I saw a NP in the Urology department.  She prescribed 3 months of oral pentoxifylline.  This was not effective. I researched xiaflex and found a Urologist with Xiaflex experience (from Xiaflex website). My initial consultation was done via telehealth due to COVID. Great discussion with my doctor and we both decided on the Xiaflex treatment. My bend was approximately 30 degrees to the right at this point.  I have some definite hourglassing.  I started the ZIAFLEX treatment in August 2020.  The initial injections were a little uncomfortable but not too bad. I did 2 shots at first visit, then 2 shots 2 days later.  I self modeled 2 days after the 2nd day of shots.  We scheduled the 2 round of shots for 4-6 weeks.  Between visits I self modeled 2-3 times a day.
I saw an immediate improvement after the first round.  I estimate a 30-50% improvement.  I went from approximately 30 degree bend to 15 degree (estimate).  I just completed the 2 round of shots on last week, September 18th. I already notice more improvement.  I am at approximately 5-7 degree bend. I am going to continue self modeling and decide in the next month if I am going to continue with the injections.  I still have the hourglassing.  I have also lost quite a bit of length.  I am not confident that will return.  
Does anyone have any suggestions with regards to regaining length?  

I was fortunate that I did not have any bruising, after the injections I did not have any pain at all.
Overall, I am very happy with the results.
52 year old, onset 2019, DX January 2020.
30 degree curve to the right, hourglassing.
First round of shots (2 days, 2 shots each day) August 2020, Second round of shots September 2020.
Excellent results after 2 rounds, curvature approx. 5-7 degrees.

Shane43

Name: Shane43
Date: 09/24/2020
Level of calcification (if any): Very hard plaque, but needle penetrates it
Result: Good
Number Of Shots: 3 rounds of 2 shots (each 3 days apart) 2-3 different injection sites on plaque for each shot
Doctor:
Modeling:Self, but I really have done very little
Summary: I have had 3 series of Xiaflex injections (6 injections total). I have hourglass shape at base of penis. I would say I am at least 50% better, but still too unstable (hinge effect) at base to have sex easily...but we do it carefully. The very hard plaque is 1/2-2/3 the size it was, hourglass indents are only 25% of original size. I have had increasing amount of bruising and swelling with each series of injections. The second injection in the series is always worse than the first and each subsequent series is worse than the previous one. My 6th injection was 5 weeks ago and I still have some soreness at base of penis, also getting mild hard/flaccid syndrome at times but not a worry yet. My doctor and I agreed that we would take a break for 2+ months and see what happens, rather than go ahead with the 4th (and last that my insurance covers) as normally scheduled. The pain and swelling is not fun and the bruising is a bit scary to see. But for me, it has been worth it so far.  
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.

TonySa

Congrats on your success Dale!  I'd consider traction and low dose nightly generic cialis to regain lost length.
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.

Dale Macusick

Thanks, I appreciate the information, I will give it a try.
52 year old, onset 2019, DX January 2020.
30 degree curve to the right, hourglassing.
First round of shots (2 days, 2 shots each day) August 2020, Second round of shots September 2020.
Excellent results after 2 rounds, curvature approx. 5-7 degrees.

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.

TonySa

Congrats Shane, using multiple modalities at the same time is the best way to attack Peyronies Disease!  Have you considered adding traction, especially with xiaflex?
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.

Shane43

Thanks Tony. Yes, I have considered traction and vacuum. I have small indentations remaining on both sides at the base of my penis, but much better than before. I have lost about 1.5 inches in length and it feels like blood is pooled up at the base of the penis a bit, perhaps blocked by the remaining large plaque. I almost have no bend or curve (5-10 degrees). I wonder which would be better, traction of vacuum. I have appointment to see a true peyronie's specialist in a few weeks to get his advice.  
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.

TonySa

For loss of length I think traction is preferred over VED.
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.

Chisam306

Name: (xiaflex treatment)
Date: (4-7-22
Level of calcification (if any): not sure
Result: (too early)
Number Of Shots: (1round 2 shots)
Doctor:Robert Bass middle TN uroligy
Modeling: (self)
Summary: (recieved first shot on 4-4-22 by uroligist no numbing shot directly into plague I have aprox 60 degree bend upward waited 3 days 2nd shot into plague self modeling started myself directly after first shot more agressive after 2nd shot immediate) I have and had alot of bruising /swelling. Ive had peryonies for atleast 6months acute - after no pain during erection very hard to have sex and have been married 28 yrs. This disease is very phsycological as much as physical. I will update next round in 6 weeks  
50yr.old with peyronies disease with 60 degree bend upward my onset was approx 6 months ago before treatment first round 4-4-22 second 4-7-22 xiaflex injected into plague self modeling immediate. 2nd round scheduled 6 weeks out

Bak

Name: Bak
Date: May 16, 2022
Level of calcification (if any): mild/low level of calcification
Result: Neutral
Number Of Shots: 8 (4 cycles of 2 shots each, every 6 weeks)
Doctor: James Kashanian, NYC
Modeling: Self, manual and via RestoreX
Summary: Each cycle was made of 2 injections a week. I had 4 cycles in total, each cycle every 6 weeks. The curvature measurement were made prior the first injection of each cycle, in the doctor office. To measure the curvature, I received a medication (injection) to stimulate erection, and the measurement was made with erect penis.

1. Prior to my 1st cycle the curvature was 55 degree, pointing upward.
2. At the beginning of the 2nd cycle, the curvature had worsen to 65-70 degrees. I also developed a bruise after the 2nd injection of this cycle, but not big deal, it went away in one week with no complications
3. At the beginning of the 3rd cycle, the curvature was 55 degrees again.
4. At the beginning of the 4th cycle, the curvature was 45 degrees. I developed a bruise after the 1st injection of this cycle which then went away in a week with no complications.

I am now waiting a few weeks and doing only manipulation with RestoreX and will then decide whether to continue with more Xiaflex injections or not.
39 yo. Peyronie's disease, first diagnosed around May 2021. Initial curvature around 55-60 degrees. Tried Xiaflex injections (10 in total) + RestoreX for over a year. Curvature has not changed. I got a new pump/indentation from using RestoreX

Ethan

Quote from: webfoot35 on September 04, 2018, 12:07:59 PM
I had zero improvement after 7 rounds (14 injections). Started at a 50 degree curvature and I'm still there.

Who was your Doctor pls ?
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.

danh

DANH
Level of cal: Told no calcification.
Result: Good. 55degrees to 20 or better.
No. of shots: 2 rounds. 4 shots total. Two differnt doctors
Doctor: Trost MFC./ Ritenour at Emory Atl.
Modeling: Manual and Retorex.

Summary:
1st round at Emory in Atl in Oct2022. 2 shots with a day between shots. Dr. did office modeling two days after the second shot. I felt he followed the manf. pamphlet instructions. Which he gave me to review. My manual stretching was per the pamphlet, which doesnt say how hard to stretch. Didn't start any Restorex until at least a week. Seemed I had some change, like a different direction maybe. He measure me at 55 degrees about a year prior to this Xiaflex treatment. I did not go back to this doctor. Just felt I lost valuable time.

2nd round, I had in Jan2023. 2 shots on consecutive days with Dr. Trost at the MFC in Orem. Followed Dr. Trost's more aggresive protocol. Started Restorex asap. Pulling much harder than with round one. Six weeks later I sent my photos to the doctor. He measured ,with the photos, a lateral left 20 degrees and zero degrees up. Prior to second round he measured 45 degrees left and 30 degrees up. Kind of a compound curve. Torque is the word he used.
I'm very satisfied with the result. My unprofessional guess is I'm less than 20 degrees. Much straighter. Dr. Trost said the 10-30 degree range is a grey area. Totally up to the patient to have more rounds. I declined more shots. Less shots the better. I think the Trost procedure minimizes the number of rounds.
 



 
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

Thanks for the update.

Many penises have natural curves. Anyone who has seen porn (I.e., all right f us) have observed that. I wonder at what degree curve threshold the curve looks natural versus "something is wrong " (ie, Peyronie's disease).  
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

flamingo_21667

Name: flamingo_21667
Date: 8/19/23
Result: So far so good
Number Of Shots: 1st round (2 injections 8/7 and 8/10)
Modeling: Self stretching (apprehensive about using traction or vacuum pump)
Summary:
I had a palpable plaque about the size and density of a pencil eraser at the end of the tunica that caused discomfort both flaccid and erect, and created a 30-45° upward bend of the last third when erect.

I had some soreness from the injections, but no swelling, and minimal bruising. I used an ice pack, lidocaine cream, and took ibuprofen for a day or two after injections, which maybe helped. Since the ice pack made my parts fairly numb, I brought it with me to my second injection and sat with it on my shaft while waiting for the doctor after the nurse prepped me. That did help make the injections a little more bearable.

The plaque was immediately reduced during this round. I can wear snug underwear (trunks) again without pain. The bend appears reduced during erections.

I'm hopeful and plan to continue treatment.
56 in Michigan

CurvesRforHighways

I had four sets of injections from Arkansas Urology, resulting in a temporary a 15-degree improvement, from 70 to 55 degrees after the second set, but no improvement after that; in fact, the curvature increased to 90 degrees, making intercourse virtually impossible.  I contacted Dr. Trost in October and scheduled injections for Dec. 11 and 12.

As you have probably read, he is very aggressive on day two, which resulted in an audible pop as the plaque broke loose. The pain was extreme until he called in some oxycodone for me that Thursday. I still have not been able to use the Restorex since the injections and can only do light stretching due to a lot of discomfort.

That said, I now have no curve. Zero. Straight as an arrow. Dr. Trost encouraged me to be patient and the pain will eventually subside. Except for four days of high level pain, I couldn't be more pleased with the results.  
Three years since symptoms and diagnosis. 70° upward curve. After four cycles, improved to 55°, but up to 90° 6 months later. December '23, one treatment cycle by Dr. Trost. Curve reduced to approximately 15° after that one cycle.