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Author Topic: FORUM XIAFLEX RESULTS (Results only, not a discussion board)  (Read 57231 times)

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germanirish

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #50 on: January 26, 2018, 06:11:30 PM »

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.
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GBinNC

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #51 on: July 23, 2018, 11:59:54 PM »

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. 
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New York

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #52 on: August 17, 2018, 02:48:59 PM »

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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #53 on: August 17, 2018, 05:31:20 PM »

Traction and/or VED can help you regain length.
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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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #54 on: August 17, 2018, 05:33:26 PM »

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 Erectile Dysfunction, might as well just get the implant but would also likely require excision and grafting.
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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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #55 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.
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JohnR

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #56 on: October 27, 2018, 12:16:06 PM »

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.
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50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...Erectile Dysfunction issues, major anxiety issues now.

tonyode

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #57 on: May 17, 2019, 10:02:54 AM »

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.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bleh

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #58 on: May 31, 2019, 06:56:21 PM »

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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #59 on: June 24, 2019, 12:27:16 AM »

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...)
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Trauma induced 74 degree vertical dorsal curve in OCT 1916 - after 3 years, success with plication.

Harry58

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #60 on: May 20, 2020, 09:23:22 AM »

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.
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TonySa

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #61 on: May 20, 2020, 02:06:17 PM »

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?
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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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #62 on: June 20, 2020, 01:56:52 PM »

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.
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Age 52
Peyronies since age 50
Xiaflex treatment success

Dale Macusick

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #63 on: September 24, 2020, 05:32:35 PM »

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.
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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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #64 on: September 24, 2020, 08:00:41 PM »

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.
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60YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend by ~50%. Can now have careful sex, but now getting worse. Saw Dr. Levine, will start PMP for 6 months

TonySa

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #65 on: September 24, 2020, 10:55:05 PM »

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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #66 on: September 25, 2020, 02:21:24 PM »

Thanks, I appreciate the information, I will give it a try.
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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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #67 on: November 10, 2020, 01:02:28 PM »

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.
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60YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend by ~50%. Can now have careful sex, but now getting worse. Saw Dr. Levine, will start PMP for 6 months

TonySa

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #68 on: November 11, 2020, 07:44:54 PM »

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?
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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

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #69 on: November 12, 2020, 10:05:08 AM »

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.
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60YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend by ~50%. Can now have careful sex, but now getting worse. Saw Dr. Levine, will start PMP for 6 months

TonySa

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Re: FORUM XIAFLEX RESULTS (Results only, not a discussion board)
« Reply #70 on: November 12, 2020, 10:21:36 PM »

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