I am opening this topic per Skunkworks advice and as no forum member volunteered to take on the job of compiling the forum members Xiaflex experience.
I am kindly asking our forum members that had done the Xiaflex treatment to post on this topic they own results in the format bellow:
Name: (forum name)
Date: (last update)
Level of calcification (if any): (NEWLY ADDED TO THE FORMAT at 5 June 2015)
Result: (Good/Bad/Neutral/Undecided)
Number Of Shots: (1, 1*X, 2, 2*X)
Doctor:
Modeling: (Doctor/Self/None)
Summary: (1-4 line summary of the treatment and the results)
In this way, the members that have posted can modify they own post in the future according to they progress.
Please cooperate with us to make this topic a good picture of the Xiaflex treatment results.
This topic is not a discussion topic, each member can post one post regarding his own experience/results.
James
Name: GS
Date: 7/28/15
Result: Very Good
Number Of Shots: 3 rounds (6 injections)
Doctor: Son Nguyen at Kansas City Urology
Modeling: Self
Summary: Update as of 10/3/17. The curvature is nominal now and I'm very happy with the results. My improvement after the 3rd round took a long time to materialize, but I just continued the modeling procedure and it really paid off.
Name: Voglin
Date: 21/04/2015
Result: Good
Number Of Shots: 8 (in 4 cycles, 2 each cycle - half a vial each time)
Doctor: Amr Raheem
Modelling: None - VED twice a day (five cycles of 30 seconds each time), two weeks after injection
Summary: My initial curvature was 60 degrees upwards. After Cycle 1 - 10 degree improvement; Cycle 2 - 5 degrees; Cycle 3 - 10 degrees; Cycle 4 - No change. Final curvature to date 35 degrees (38% improvement). The injections were a lot less painful than I imagined. Best compared to a bee sting but the pain only lasted about 5 seconds. The bruising is a bit traumatic the first time but once you know this is normal and goes after about three days it's OK. I'm glad I took the attitude from the start that any improvement was going to be positive.
Name: ive
Date: 22/4
Result: Good
Number Of Shots: 8
Doctor: Amr Raheem
Modeling: VED
Summary: 45d to 20d. I was told my plaque was really tough/hard at outset. First injection was very painful and produced no result. Rest much better. Last did nothing.
Name: Neverheardofthisb4
Update: April 24, 20161
Round 4:2 injections mid-February, 2016
Calcification: None apparent
DR: Lue
Modeling: Stretching 10x/day 1 minute.
Results: Little swelling or discoloration this round. As of late the shank slants left and the head slants slightly right. The length is compromised and intercourse is problematic. I have some ED that came on with the peyronies so its difficult to figure which is the primary problem.
I've started using an andro penis traction device to see if I can regain some length.
Update: January 16, 2016
Round 3: 2 injections mid-November, 2015
Calcification: None apparent
DR: Lue
Modeling: Stretching 10x/day 1 minute.
Results: Lateral bend down to 5-10 degrees, but there is some con-caving; still a big improvement over a year ago. The dorsal curve has been reduced somewhat to 30-40 degrees.
Update: October 3, 2015
Round 2: 2 injections mid-July, 2015
Calcification: None apparent
DR: Lue
Modeling: Stretching 10x/day 1 minute.
Results: Good reduction of lateral curve from 45 degrees to 15 degrees. But huge increase in dorsal upward curve has appeared---almost 45 degrees.
Acute: Following round 2 I had a blood blister which resolved after a few weeks.
Psychological: Its been just over a year since the peyronies became noticeable. The absence of intercourse and normal sexual activity has been depressing and exacerbated strains with my partner. I sometimes feel like I'm on an emotional roller-coaster, sometimes hopeful that a modicum of normalcy will return to my sexual abilities and at others feeling that my days as a sexual person are over. I am not sure how long the relationship will last. I dread the thought of being single and from a sexual perspective only being able to offer oral sex.
Narrative:
I had round 2 of xiaflex injections in July '15. The procedure and reaction was essentially the same as for round 1. Round 2 accomplished a significant decrease of lateral curve that I currently estimate at 15-20 degrees, down from 45 degrees. However, the dorsal upward bend has radically worsened. At full erection it is almost a 90 degree elbow bend. If my girlfriend could stop laughing and if we were to actually to try to have intercourse I don't believe that the geometry is workable. And then there is the related problem of ED which has accompanied the peyronies. In short, the dorsal curve has become dominant.
Round 3 is scheduled for late November
--------------------------------------------------------------
Date: 4/24/15
Result: Negligible. Lateral curve 45 degrees--no noticeable improvement; dorsal curve maybe minor improvement.
Number: 1 round of 2 shots
DR: Lue
Modeling: Stretching 10x/day 1 minute.
Summary: Procedure was reasonably free of pain;
penis looked like roasted hot dog for a week and the reaction to the injections is 95% better after 3 weeks. However, the curve did not budge. My diagnostic ultrasound showed substantial plaque within the corpus cavernosum as well as in the tunica.
Name: hope4all
Date: May 4, 2015
Result: Good
Number Of Shots: 6 shots, last two shots will be some time toward end of June
Doctor: Dr. Bruce Kava at U of Miami. He also works at the V.A. hospital in Miami. He does A LOT of Xiaflex and says he's gotten great feedback from his patients.
Modeling: Self modeling only
Summary: 60 degree upward, now approx. 25 degrees. All girth has returned. Very slight increase in length, but I'll keep working on that with traction/VED after complete. Significant bruising and redness in each cycle. Current erect photos (left, right and top view) provided to dr. before each cycle begins. Dr. does not induce or reduce erections prior to shots. started mild traction immediately following 4th shot and as redness and bruising slowly subsides, I increase to 3-5 hours/day and slightly increase length (tension) in week 4 after each cycle. 2.5mg Cialis almost daily throughout treatment.
Name: Trouble with the Curve
Date: May 5, 2015
Result: Undecided
Number: 1st Shot
Doctor: Jacob Rajfer, UCLA-Harbor Urology
Modeling: None
Summary: Quite painful from the doc's grip and needle. Asked and received local pain numbing injection. I am only the third patient for DR. Rajfer. He stated it was difficult to insert the xiaflex due to some possible calcification in the plaque area. Have a scheduled ultrasound next Wed. Going ahead with the second injection tomorrow. Moderate bruising and swelling around the base and injection site. A little sore when I move around.
Name: Mending the Bend
Date: May 14, 2015
Result: Good
Number Of Shots: 8 shots (4 rounds)
Doctor: John Mulhall, MSK New York
Modeling: Self.
Summary: I began with a 35 degree bend to the left, but after a course of Verapamil treatment my condition worsened dramatically to a biplanar bend - 40 degrees left, 40 degrees dorsal, and with severe hingeing and erection instability. I saw immediate improvement with the first Xiaflex injection, and after 8 my curve is now 10 degrees left, 10 degrees dorsal. My hingeing and instability went from severe to mild. I also started with moderate hourglassing on both sides, mid-shaft. That has now greatly improved, almost nonexistent. I'm very pleased with these results.
Name:johnlee
Date: May 15,2015
Result: undecided
Number Of Shots: 4 shots (2 rounds)
Doctor:
Modeling: Self
Summary: 59 y/o. Diagnosed in June, 2013. Prior to Xiaflex treatments, was 42 degrees upward bending, shortening, mild hour glassing. My plaque is a hard cord that covers the entire dorsal (feels like an electrical wire under the skin). Per my doctor, there is no calcification because he could stick the needle in the plaque easily. Asked the doctor if imaging could be used so we would know what my plaque was like. No imaging was done.
When I was first diagnosed less than 2 years ago, the plaque was in the size of a grain of rice, or a very small nodule. Curvature was less than 20 degrees. It turned into a big hard cord soon after 5 Verapamil shots, curvature became worse and shortening became obvious . Did Verapamil make it worse? No one knows.
After the first cycle of Xiaflex, curvature improved from 42 to 35 degrees. I had mild swelling after the second shot of the first cycle. Swelling went away in a week. I had no swelling or any reactions on the two shots in the second cycle in April. It has been almost one month after the completion of the 2nd cycle and there has been no improvement. It seemed I received distilled water instead of xiaflex in the 2nd cycle. I am hopeful that 3rd and/or the 4th cycle will help. I can deal with the curvature, but the shortening is the most bothersome and threatening. Have used traction for 1/2 year - didn't help. I hope I will be saying result is Good next time. Right now I can only say undecided.
Anyone who has similar symptoms, sharing information will be much appreciated.
Name: cantbelievethis
Date: 10 June 2015
Level of calcification (if any):
Result: too soon to tell
Number Of Shots: first shot of round one today
Doctor: Dean Knoll
Modeling: begins 2 days after Shot Two
Summary: Didn't hurt as much as I expected, and I'm basically going into treatment with a positive mindset about it all. Here's hoping...
Name: ReaJam
Date: June 14
Doctor: Dr Sigman/ Hwang
Summary : had second shot of Xiaflex on June 10. Injection was more painful than the first but had far less swelling and bruising. Started the modeling Friday. Now it's 6 weeks until check up hopefully I will have some improvement. Starting with a 43 degree dorsal bend.
UPDATE August 04, 2015
Just got my second round of shots from Dr. Sigman & Dr. Hwang. Results from 1st round was only a 5 degree correction (45 to 40). Second rounds was opposit from first, no swelling or bruising on first one then moderate swelling and bruising on the second shot. Hoping for better results this series and plan to be a little more aggressive on the modeling for the next 6 weeks.
Name: bucfan
Date:July 22, 2015, updated on August 10, 2015
Doctor: Dr. Bennett
Result: after 4 rounds (8 injections), fairly positive
Modeling: self
Summary: prior to the first shot my curve was 85 degrees to the left. I realized 5 degrees of improvement after first round and about 40 degrees of improvement after round 2. I see the doctor in early August for round 4, my feel is that I have not seen any improvement from the third round. Therefore I am at 40 degrees to the left heading into the final round. There has been some shortening and a bit of lost girth as well. I do not believe I have seen any improvement in these areas (length/girth) as of yet. The numbing shots are quite painful, the Xiaflex injections are not so bad because the area is numb. Significant swelling and some bruising for about a week each time. After 2 weeks I feel about 90% better.
I had my 4th round last week. As expected, there was no improvement after round 3. This round was especially rough...it has been 5 days since the second shot and the swelling is only now starting to come down. I have not even been able to start the stretching exercises due to the intense discomfort and swelling. Once I know more, I will update this post with the round 4 results.
It is October 11th, more than 2 months after the 4th and final round of injections. I go back to the doctor in one month for a final exam, but unofficially, I believe my curve to still be 35-40 degrees to the left and roughly 10 degrees up. It appears that only my second round was truly impactful. I am still using traction for 2 hours a day, trying to use it 6 times per week (I started using the device 2 months ago and plan to continue for 6-9 months). I will ask the doctor if I have any other options when I see him next since I am not satisfied with where I am at present.
Name: losecurve
Date: July 24, 2015
Doctor: Dr. Culley Carson
Result: No improvement
Number of shots: 2 (1 round of 2 shots)
Modeling: Began two days after 2nd shot
Summary: Shots are not fun but not unbearable. Only stings for about 7 seconds. Minimal bruising that went away after a few days. My curve is 60% dorsal. Basically, there has been little if any change from the first round, scheduled for the second round in two weeks.
Name: IhatePD
Date: 8/6/15
Level of calcification: None
Result: Good
Number Of Shots: 4 cycles of Xiaflex, 2 shots in each cycle
Doctor: Dr. Metro
Modeling: Self - using traction fitted with a suction cup instead of a strap. continuing 2,000 mg of L-Arginine and Acetyl L Carnatine daily
Summary: I had my follow up visit yesterday to measure the change in curvature. I started with a dorsal curve of about 45 degrees and about 10 degrees to the left with significant distal narrowing. I used traction for a little over a year and reduced my dorsal curve to 40 degrees and my curvature to the left to 5 degrees before starting Xiaflex.
With Xiaflex, I reduced the dorsal curve from 40 degrees to 34 degrees, a 15% improvement and eliminated the curve to the left. I also saw an increase in girth which my girlfriend has happily confirmed. Although protocol was not to do traction until two days after injections, I did so anyway. When I had my third round of injections, my doctor told me that the protocol had changed and that better result we being achieved by doing one hour of traction on the day of injection.
I am to continue traction, 2-3 hours per day for the next 90 days and then come back to get measured again. My doctor feels that the invasive nature of injections causes normal plaque formation. Peyronies is abnormal plaque formation in response to trauma so hopefully without additional trauma I will continue to improve.
If I am not happy with my results in 90 days, I will see if my insurance will pay for more cycles of Xiaflex and if so, go froward with them. If not, I will probably pay for it out of pocket. Before the Xiaflex, my plaque was a chord starting about one third the way up from the base and extending to the base of the glands. The starting point of the plaque at the base of my penis was rounded and about the size of a quarter (U.S. $). This is the spot where my curvature originates as well as the distal narrowing and also where I received the Xiaflex shots. After the Xiaflex, this rounded quarter has turned into a chord about the width of a running shoe shoelace with a spot in the middle of it about half the width of a shoelace. When this quarter sized plaque changed size and shape to the narrow chord is when my girth started to return It is still not there yet but I feel that I got back about half of the girth I lost. I think more shots of the Xiaflex in the narrowest part of the chord will effectively sever the chord and further reduce the curve and let the blood flow more freely and increase the girth. This spot is where my doctor and I feel causes a "blockage" causing the curve and narrowing. I am hopeful that if I can "break" the chord in this spot I will see immediate improvement.
FYI, my girlfriend loves the dorsal curve as it hits her G-spot. I hate it and it makes me very nervous when she is on top or I enter her from behind.
Name: davideric
Date: 10/8/15
Shots: 4 cycles total of 8 injections
Result : reasonably good , curve reduced from 30degree to 10 degrees. However, no improvement on hourglassing which my uro expected due to the process that results in hourglassing and which worried me more then the bend ..however..my straighter penis does offset somewhat the hinge instability/ buckling that hourglassing causes.
Doctor : dr love, melbourne
Modelling : At home , just periodic stretching and bending . No other devices used
Summary
Reasonably happy with results , I believe my results give me more confidence and less bother about achieving decent erection and penetration .
Name: Arrecife.
Date: Aug. 15th, 2015.
Result: Excellent. Curve reduced from 35 degrees to +-17 degrees (50%)
Number of shots: 1 Round, two shots.
Doctor: Martínez-Salamanca (Madrid)
Modelling: By my own. Now starting Andropeyronie tool.
Summary: Ver good result, probably not necesary a second round of shots.
Name: Dave
Date: September 10th (shots rec 8-17 & 8-22)
Doctor: Dr. Gelbard
Result: No noticeable improvement
Number of shots: 2 (1 round of 2 shots)
Modeling: Self
Summary: Shots are not unbearable. Bruising went away after a week My curve is 42 degrees to the left, dorsal. No noticeable change. Scheduled for the second round in 8 weeks. After second shot, resumed using traction daily, 1 hour morning, and 2 hours at night.
Update October 30, 2015
Name: daved
Date: 10-30-15
Level of calcification : none
Result: Neutral/Undecided
Number Of Shots: Round 2 completed
Doctor: Gelbard
Modeling: Self
Summary: after completing round 2, I am more optimistic. Before round 2, my doctor said I went from 42° to 32° , which sounds good, but I was skeptical of the measurement, as the erection med had not fully kicked-in. Slightly more bruising this round. Penis feels a little softer in plaque area. Hoping to see noticeable results this round.
Name: Ives
Date: Oct 2, 2015
Level of Calcification: 3 calcifications, largest .57 cm
Result: undecided (too early to know)
Number of shots: 1 round, 2 shots separated by 3 days
Doctor: Lue
Modeling: none -- I'm hourglass
Results: had 2nd shot of first round today. As such, at this stage have limited info to offer than experience of procedure. 1st shot was difficult, both from a pain standpoint (though I did have pre xiaflex numbing shot) and difficulty in needle penetrating the affected area because of calcium surrounding. Minor bruising and minimal swelling afterwards. 2nd shot was walk in park - dr said the area was significantly softer from effect of first shot. Very little pain this time. Also knowing what to expect made easier as well.
Name:Bendedict
Date: 10/7/2015
Result: to early
Number Of Shots: 1 rounds (2 injections) 24 hrs apart
Doctor: Dr.Carson UNC Health Care
Modeling: Self
Summary: Update as of 4/30/2016
The first shot felt like pin prick. The second shot less then a bee string... No swelling are bruising only noticeable signs is were the shots were placed .
Just finished my last rounds of shots. I only had a little bruising on my 3th and last round , The result was from 90 degrees to around 60.. Enough that I could has sex. But I still have a bad bend to the left Going back on may 19th to discuss further treatment.
Name: Charlie44
Date: 10/21/15
Result: Too early to tell much, 30 degrees to the left
Doctor: Carson
Number of shots: Just started my second round today
Modeling: 5 minutes a day twice per day
First round was easy. Second round today, much more swelling and bruising all over penis.
Just finished my 5th round of Ziaflex injections. I did not have really any results after the first 3 rounds. Have an hour glass issue and shortening of the penis. After the 4th round I had the doctor inject where my penis connects to my body, close to the base. After the 4th round I still have the hour glass shape but my length has definitely gotten better. Injecting the lowest part of the calcium around the base of my penis made a big difference (no pun intended). He was still focusing on the calcium buildup around the middle of my penis but injecting lower has allowed my length to come back which was a major psychological deal for me. To live life at around 5 inches in length and notice 1 day you were are 3.5 inches was extremely depressing. My wife and I discussed this in detail and letting her know how bad I was feeling and keeping her informed really helped. She noticed the initial difference (shortening) but because of our communication she was very supported. She really appreciated the effort (and pain) I was willing to take to help things get better. Now that the length is back we both have gotten used to the hour glass shape and it is not an issue.I have just completed my 5th round of injections and I am not sure if there is going to be much improvement. Because of the swelling after the 1st shot this week, the doctor had a hard time finding the calcium for the second shot. A lot of bruising because he injected the needle 3 times looking for the calcium. My insurance has approved a 6th round of shots if I want to do this and I am going to wait and see the results of the 5th round.
In summary, I am happy to get some of the length back, the thickness around the base has gotten better although I am still nervous about letting my wife being on top during sex because of how then my penis is at the base. Would I do the injection again? Yes, just for the length.
Name: Gringo
Original Posting Date: 12/3/15
Calcification: None; soft lateral plaque running nearly the entire length
Result: Ecchymoses on entire organ, only slight discomfort
Shots: Completed cycle 1 today
Doctor: Rafael Carrion, Tampa
Modeling: Self
Planned regimen:
Twice-daily VED treatments -
Moist-heat penis 15 min
VED 3 min, rest 30 sec, 5 times
Remove, grip base and glans, squeeze and bend opposite curve 1 min
Stretch penis while applying ice pack 15 min
Latex stretch strap attached to velcro knee strap 4-5 hours/day at least
Bending nocturnal erection opposite curve
Update 7 Feb. 2016
Had 2nd cycle 3.5 weeks ago. Doctor very aggressive with drug dispersement this time. I began modeling regimen day after 2nd shot starting with preheated manual stretches and bidaily stretch strap. After 48 hours began aggressive VED 1x daily. Obvious improvement this time. Pre-Peyronies Disease length regained. Circumference regained or nearly so. Indentation lessened. Bend reduced from 33º to 25º or less.
Update 25 Feb.
Had 3rd cycle injections past 2 days. Doctor (and even the nurse!) detected more flexibility, "spongeness", elasticity in the soft plaque. I'll play the same game with modeling as earlier: preheat, stretching, VED, stretch strap. Going to try something new, using vacuum from the side to pull the "waist" indentation outward. Doctor thinks the idea has potential.
Update 17 April
The side vacuum was a huge mistake, as reported in my other postings, necessitating surgery. Fourtunately no permanent damage. Fourth and final cycle will be soon. Report results in a few weeks.
Update 25 May
Fourth cycle a disaster. Prep erectile injection resulted in a priapism. After 30' of ice, Dr. Bickell injected into an 80% erection. This is not unusual now; more and more doctors are doing this. Two days later when I went for the final injection, I had a severe blood blister. This burst upon examination and revealed a severe loss of tissue. I was sent to the ER at Florida Hospital for emergency exploratory surgery by Dr. Carrion. Fortunately, this revealed only a loss of skin tissue and no deep damage, none to the tunica. Surgery was 3 weeks ago today. I'm still healing, of course, with many stitches. Dr. Carrion thought he'd have to graft skin from the scrotum, but he was able to draw together the penile-scrotum tissue like a drawstring purse. It's healing well, but it ain't pretty.
It's possible I could still get the 8th injection, but we're waiting to see how I look when I've healed. It may be a question of risk-reward. Without a woman, the question of intercourse is still academic. Enormous expense involved in all this which, fortunately, insurance has picked up. The price of Xiaflex has gone up from 7k to 10k. It's outrageous. Just the two surgeries were 60k for the hospitals plus doctors' fees. Unbelieveable expenses.
Update January 2017
Surgery healed perfectly and I am a success story. My before/after photos are in the Xiaflex photo section. My dimensions are the same as before Peyronies Disease. The erection still has a slight bend at the base, but there is no chance of buckling, no indentation and no doubt it will perform as needed.
Name: pbalvo1
Date: 12-15-15
Level of calcification : none
Result: Positive
Number Of Shots: Round 1 completed
Doctor: Chung-Virginia
Modeling: Self
Summary: After completing round 1, I had an 12% reduction in upward dorsal curve which started at 53%. Started second round today. Very pleased to see results after 1st round. At 53% upward Dorsal curve, sex was still possible but awkward. Very excited to see results after this second round and will still go to round three. My doc tells me three rounds are the norm. Modeling i did myself with a stretcher. The times a day, 30 seconds each time.
Name: Corkscrewed
Date: 18/01/16
Shots: 2 cycles; 4 injections
Result : After round 1: curvature decreased from 45 to 37.5 degrees
After round 2: final curvature 35 degrees
Doctor : CJ Shukla, Edinburgh
Modelling : VED device, squeezing by Doctor three days after second injection
Summary
Had my first injection exactly 6 months after the initial incident. Was pleased to see a decrease in curvature after the first round, even though it was only slight. Mild issues with intercourse before the injections - just happy with any improvement. Dr Shukla was absolutely top class. A true professional.
Pleased with a 10 degree decrease after two cycles. Peyronies no longer bothers me. At 20 years old with Peyronies I was absolutely devastated. Now it honestly doesn't affect me whatsoever. Cheers!
Name: Jimbruski
Date: 25/02/16
Shots: 2 treatments (cycles); 4 injections
Results: No improvement
Doctor: Bret Lebed
Modeling: Manual, per uro instructions (stretching 3 to 4 times per day x 1 min per)
Summary: With no improvement was referred to Dr. Lue for possible surgery, but will talk to Lebed about Pentox and VED with low dose Cialis option first.
Edited by moderator, similar posts are not allowed on the forum and this topic is about Forum Xiaflex Results
You may edit this correction with additional information
Name: mstuzin
Date: 27/02/16
Shots: One cyle
Results: Excellent, down from 40 to 20 degree
Doctor: NA
Modeling: Details bellow
For my first shot, I experienced bruising and swelling which was fine. He did the modeling for me on the third visit after the second injection. He asked me to do modeling and stretching as much I can for the following week, which I did. I have seen improvement.
Hi
Date april 12 2016
Doctor Einar Brekkan (Sweden)
Shots 1 of two frist round
Dorsal bend about 70-80 degrees and a small left bend.
Result too early to tell
I got my first shot of first round yesterday next will be tomorrow. It hurt a bit but nothing to cry over, its worse to hit your thumb with a hammer. The doctor told me that my small friend might get blue, red and start swelling but it will go back to normal. He was right, in the evening it was bigger than ever and looked ugly but it was not very painful. After one day the swelling has gone down a bit but still very colorful. I had some fever in the morning but now its gone. The pain of the shot, the swelling and bruising is not a big deal and nothing to be afraid about. I did som stretching today, too early but the information in this forum gives the impression that those who do more aggressive stretching gets the best result. Well tomorrow I will get second shot and modeling instructions. Ill keep you posted about the rest. Peyronies is a stressful thing but there are much worse illnesses to get.
Name: PMRT (you can reach me at tusinip@gmail.com. I don't care if anyone knows my name)
Date: 4-16-16
Level of Calcification: None
# of shots: I have had 26 verapamil shots and 10 Xia-Flex shots since roughly Jan, 2014.
Last Xia Flex shot: 4-11-16.
Doctor: Dr. William Connors, Men's health Boston
Modeling: Yes. By the doctor.
Resuts: I have (or had) a very stubborn case. Original scar size: About the size of a small walnut, dorsal location. Current size: probably the size of a small raisin once this last round of swelling goes down. Curvature started at roughly 75 degrees and it would not bend straight. Currently about 20 degrees and it bends straight very easily. Good erections.
Summary: Since I paid for 6 of the Xia Flex shots I could dictate the course of treatment so I opted to alternate between a course of verapamil then a Xia-Flex shot, then verapamil again, etc. In the last round of ten verapamil shots I suggested we use a larger diameter needle. This definitely accelerated the scar tissue to disolve more quickly. Even two shots of pain block did not work on me before this last round of modeling so I had to bear the pain. Excurciating doesn't describe it but I'll do it again if need be. The doctor said the scar literally fell apart in his hands this time, leaving only a very small core piece. I encourage all men not to stop with the standard course of treatment but to continue. Email me if you wish. tusinip@gmail.com
Name: daved2
Date: 4-23-16
Level of calcification: none
Result: Good
Number Of Shots: completed 4 rounds
Doctor: Gelbard
Modeling: Self - manual stretches 3X per day
Summary: 42 degrees to 32 degrees, left curve, located mid-penis.
After completing 4 rounds of shots, I can say it was worth it for me. I did not achieve the result I had hoped for, but the treatment reduced my curve from 42 degrees to around 32 degrees. That may not seem like a lot, but it was alternative to surgery, that I had to try first. I do plan to have surgery to correct the remaining curvature, which I believe is more congenital than plaque. My doctor said, by reducing the angle of the curve, I reduce the need for more than a Nesbit or Stage procedure to correct the remaining curvature, with minimal loss in size. I am going to continue the manual stretches and traction to see if this further reduces the curve, and possibly elongates me in preparation of the upcoming surgery this summer, probably in July. For those of you contemplating Xiaflex treatments, the hardest part, for me, was dealing with my insurance company. US Bioservice - (The specialty pharmacy that dispenses the Xiaflex to your urologist) has employees who do this all day long, and can be helpful in getting your claim through your insurer. Like most things, its never easy at first. Once you get your first order of Xiaflex, you are in the system, and your next orders are much more routine. The pain is there, but not as bad as some report about the injection, and the aftereffects are more cosmetic bruising than actual pain or discomfort. P.S. ask US Bioservices about the Healthwell Foundation grant, which gave me a grant for $5600 towards the treatment.
Name: Alan
Date: 4-29-16
Level of calcification: none
Result: Unknown
Number Of Shots: completed 1 round 7 days ago
Curvature - 30-35 degrees
Doctor: Dessault
Modeling: Self - manual stretches 3X per day
Summary: At this point optimistic about results. Doing modeling 3 times daily.
Question? Can anyone tell me what the average time frame is to see any kind of improvement? As a newbie I don't really have a clue at this point. I can say that prior to my second injection the doctor indicated that he noticed a good bit of reduction in the plaque.
Thanks
First two injections reduced dorsal bend from 80 to 45 degrees. Side effects swlling and purple but not so bad. Vanished in a week. Second two. No change. Will continue
First two shots resulted in purple and swollen genitals but that was normalized after a week and it was not painful. Receiving the shots was painful but not unbearable. Was it wort it ? Well my dorsal was reduced from about 75-80d to about 45 so yes it was worth it.
Second round of 2 shots with one day in-betwen gave same reaction of purple and swollen genitals with no pain. Second round though didn't change anything. Anyway i will continue with at least two more rounds or more. The pain is bearable and the side effects ugly but not very painful. If I can reduce the bend at least 10 more degrees it will be worth it.
Name: Dros
Date: June 9th, 2016, had my shots May 24th and May 26th
Level of calcification (if any): none, also no palpable plaque (which, I should mention, was a reason for exclusion during the trials)
Result: None/Bad
Number Of Shots: 1x2
Doctor: Dr. Virag, Paris
Modeling: Self
Summary: Had my treatment with Dr. Virag (who I consider to be an excellent urologist/andrologist). I have no palpable plaque and only diffuse fibrosis (~2.8mm), but Xiaflex-injection was nonetheless possible because they (he and Dr. Sussman) use ecography to guide the needle. Had 4 rounds of PRP before that. I'm afraid to report that all 6 sessions (PRP and Xiaflex) had zero effect. I actually believe that I picked up an additional injury during Xiaflex-modeling, but so far the curve remains stable (at approx. 70°). Will opt for surgery sometime this fall...
Name: IhatePD
Date: 9/9/16
Calcification: None, just plaque that started round like a quarter then elongated into a strand about 4 inches long
Results: Started with a 45degree dorsal curve and 15 degrees to the left and distal narrowing, I used traction and supplements for two years and improved to 40 degree dorsal curve and about 5 degrees to the left: first 4 cycles of Xiaflex completed last year and improved from 40 degree dorsal to 34 degree dorsal and improved the distal narrowing: just completed a second set of 4 cycles of Xiaflex and improved to a 30degree dorsal curve and most of the distal narrowing has gone except for a small left side dent.
# of shots: 16 (8 cycles of 2 shots each)
Doctor: Dr. Metro Philadelphia
Modeling: Self
Summary: I did very little traction during the second round of Xiaflex treatments. I modeling and I felt it helped a lot. I have eliminated most of the distal narrowing and I am very happy with that. My doctor said to do nothing for the next three months to see how thing go on their own. I think if I could straighten out the last 30 degrees I would get most of my length back.
Overall I am very happy. I don't think I will have plication surgery. After the three months, depending how it goes I might start traction and VED again along with the modeling. In the interim I will continue to have sex and enjoy life - no matter what!
Name: Leonard
Date: March 2016
Level of calcification: No calcification. The plaque is like a cord that runs through the length of the penis.
Result: Little. Some of the curvature to the left improved a bit, also the dorsal curvature is not as stiff any more.
Number Of Shots: 16 shots. Two rounds of 8 injections
Curvature - hourglass dorsal and curved to the left.
Doctor: Khera
Modeling: Self – Manual 2-3 minutes per day after the injection
Summary: After 16 injections I had a little bit of improvement, but as much as I was looking for.
Name: Buscador
Date: October 2015
Level of calcification (if any): calcified plaques of 11x8mm + 9x3mm + 4x2mm
Result: Good
Number Of Shots: 1 round of 2 shots
Doctor: Martinez-Salamanca (Madrid-Spain)
Modeling: Self
Summary: Before the treatment I had 30º dorsal and 20º left curvature , the calcified plaques reported above and some other plaques not calcified. First shot was fully on the bigger plaque and second shot was divided among the three bigger plaques. I also got Cialis 2,5 and pentox 400x2 daily, and a traction device. After a year, the situation is stabilized, now I have 20ºdorsal curvature and 15º to the left. The calcified plaques are now 7,5x4mm + 4x3mm + 2mm which I think is very good. I also had an indentation that stays the same.
Name: Rotis
Date: November 14 2016
Level of calcification None
Result: Good
Number Of Shots: 2*2, 4*1
Doctor: Einar Brekkan, Sweden
Modeling: Self
Summary: Started with about 80d dorsal bend, some to the left and substantial shortening, about 3 cm
1 round 2 shots, Curvature reduced to about 50d
2 round 2 shots, no effect
3 round 1 shot, no effect
4 round 1 shot, something changed, some length gain.
5 round 1 shot, together with round 4 definitely noticeable improvement some length gain again. According to my girlfriend substantial difference from the last two rounds.
6 round 1 shot, about the some length gain, dorsal bend reduced to about 20d My girlfriend told me there was a substantial difference again. And now I can really feel the difference too. Less, bend, better stability and less hour glassing makes it possible to have more or less normal sex again.
After round 2 my doctor told me that experience seems to be that 1 shot per round gives as good result as 2 per round. From round 4 he started to concentrated on the thickest parts of the plague. From that round i could also feel the plague softening at the spot of the shot. Same at round 5 and 6.
After round 1-3 i followed the protocol for modeling with modest stretching several times a day but from round 4 i started to model more aggressively with hard stretching, bending downwards and from side to side while massaging and pressing the soft spots from the shots and quite hard bending downwards at erection. - It seems to have given much better effect but as it is not according to the instructions i can not recommend anybody to do the same as it might cause damage.
After first round i took anesthesia as the first one was very painful. That i can recommend as it help you to be still at the xiaflex shot with helps the doctor to be more accurate. The treatment is painful but bearable, I had severe swelling and totally purple package almost every time but it goes away within a week so its nothing to be concerned about.
the 6 round was supposed to be the last one but as the result from round 4 to round 6 was successful the doctor agreed to decide on one mor shot after reviewing the result as long as it has good progress.
Summary: I am very satisfied as the bend is substantially reduced, the stability improved, the plague is substantially reduced and softer, I got about 2 cm back of my 3 lost and my sex life has gone back to almost normal. I have my life back :).
My recommendation to all you out there is to go on with the xiaflex treatment even if some shots have no effect its worth the pain and money if it works. It might not work for everybody but it worked for me.
Name: sadmonkey
Date: November 30th, 2016
Level of calcification (if any): [Not sure what this means]
Result: Some progress, still going...
Number Of Shots: 2 shots round 1, 1 shot round 2, 2 shots round 3.
Doctor: University of Washington Men's Health Center. 4 different doctors so far.
Modeling: Doctor once per round, Self 3 x 30 seconds, 3 times a day.
Summary: 37 degrees to the left down to 27 so far.
I had a 5 degree improvement in the first and second rounds for 10 degrees total. The change happened in the first 2-3 weeks after the shots. There was no further improvement in the remaining weeks of stretching between rounds.
The first injection of round one and second of round three were extremely painful. The others did not hurt and were not a big deal.
My penis has been wrapped in tight compression for at least a day following each injection.
I only had one injection on the second round as the first shot ruptured some blood vessels and I had several hematomas (large blood blisters) develop that day. Those hurt and took several weeks to heal. I was basically dealing with road rash along half my penis. I had to change dressings 6 times a day for 4 (or was it 5) weeks. However I continued to do the daily stretching exercises while the skin was healing which probably prolonged the healing process. I didn't want to waste the injection.
The second shot of round three was done this morning.
Starting curve 50 degrees
1st Cycle 10-7&9-2016
Reduction in Curve about 5-7 degrees
2nd Cycle 11-18&21-2016
Reduction in Curve about 0-2 degrees
Cycle 3 1-6&9-2017
Name: Kahuna31
Date: December 2016
Result: Good
Number Of Shots: 2 x 2
Doctor:Turk
Modeling: doctor first time then self
Summary: along with shots VED was used and vibration-which all seemed to help, I see some improvement but still working on it.
I need to take measurements and pay closer attention to the improvement as others have
Name: Willywonka
Date of post: 14 March 2017
Dates of injections: 13 December 2016, 10 January 2017, 14th February 2016
Result: Excellent. Started 50 deg up and some tilt left, ended 27 deg up, 25 deg tilt left at tip.
Cost: £5,000.00
Level of calcification: unknown, but obviously suitable for treatment
Injections: Raheem ("Modified") Protocol, at St Peter's Andrology Centre, London.
Doctor: Amir Raheem
Modelling: Self. VED twice daily (ten inflation for 30s spaced by 30s deflation), manual stretches twice daily (ten for 30s, relax for 30s). Instruction to stretch for a set of ten each time of urination was not found to be realistic. Traction used after last injection largely replacing manual stretches. VED not applied during sporadic travelling.
Summary: – For those not familiar with the injection protocol, it is 3 injections, each of 0.9mg, spaced apart 4 to 6 weeks, following a scan to establish nature of plaque and effective apex of curvature. Each injection of 0.9mg is spread over three lateral "stripes" spaced around (generally above, centre, below) apex but more specifically positioned for individual's plaque presentation, see http://www.jsm.jsexmed.org/article/S1743-6095(16)00666-4/abstract. The injections are painless, being given after a full local blocking anaesthetic administered around the base of the penis. There has been no meaningful gain in length of erection, but there is a marked increase in flaccid and stretched length. Girth not considered before or after, but little visible change. Indented portion left of base not treated, and still present, but not a major impediment. ED which long pre-existed the Peyronies makes before and after comparisons of quality of "natural" erection difficult, but final functioning result with other ED support as used previously, is good.
Dru92646
5/1/2017
No improvement
Completed third phase of Xiaflex
Dr Reyblat (Kaiser Sunset facility California)
Self modeling
Summary-We may not to go to phase four Xiaflex because of zero improvement.They will do an injection for erection evaluation and discuss implant due to my almost 90 degree bend.
Sadan9
Age 58
Diagnosed : Must qualify this. ED diag. first started supplements Doctor tested me result Low T
Prescribed Testosterone cream. Middle of the night I had an erection and suspect wife was not pleased with my waking her even though I was asleep. Severe pain NOW I was awake. Results 40 degree bend appeared. She of course denies any involvement
Urologist Dr. Keel Fairhope, AL.
First inspection injection for erection to determine degree of curvature and palpitate for plaque. Prescribed Pentoxifylline to slow or stop progression 400 MG 1 a day
Calcification : unknown
Curvature 40 degrees
Length : Original 7 1/2 - 8" Post : Guess 4 "
Dr. Keel advised to continue my supplements and use the stretcher I ordered
waited a couple of months
6/6/17 1st Xiaflex injection preceded by numbing injections
Results : Too early to tell
6/9/17 I will receive 2nd injection
Pain level of 1st injection 1- 10 = 2
Results : Too early to tell
Will continue review after 2nd injection on Friday
Must
Second round of Xiaflex
« on: June 12, 2017, 01:06:28 AM »
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Ok, hope I am posting this right. Went for the second round of injections. Sat in the Doctors office for 1 1/2 hours before being called back. Nurse said they had an incident earlier is why they were running behind. Ok, now my mind is racing. LOL A little nervous. Numbing shots, played chess on the phone while I waited for the stuff to work. Dr. Keel came in wham bam thank you mam and it was over really quick. First round only one tiny bruise about the size of a pencil point from a needle. This time significant more bruising which is common . Dr. Keel was surprise that I only had the little point bruise from the 1st round. Little tired from my back problems but I tried to do a few things around the house. This could have played into the bruising or not . I know several times I bent a certain way and it hurt so anything is possible. Used the stretcher lightly that evening , quite painful. I forgot to say from the 1st injection I was still very tender when he was checking before the second round. He said this was normal and that it meant the plaque was breaking up. Friday was my appointment and it is now Sunday night. I have been using the stretcher and found that it is getting easier to stretch between 8-9 inches so some progress noted. Resting length after is 6 -7 inches. Monday morning going in for the modeling session then I believe he said we will wait 2 weeks before the next round of injections. Most of the numbing injections aren't too bad, well not like you would imagine. The worse is the injection into the plaque as it is tougher so more pressure is felt. It can make you tense for a second but survivable. The bruising and slight swelling is on the left side and about three inches in length. As the days and stretching progress after the second round it has gotten less painful at the beginning of the stretching. I have noticed a reduction in the curve upwards by at least 50% although I have not tried to become completely rigid yet . As usual Dr. Keel said lay off sex for two weeks. I laughed and told him that was no problem with my wife. LOL Though I was nervous I think he did try to lighten the mood some by saying don't worry we'll get you straightened out. What a play on words. I really didn't catch it at the moment as I was preoccupied with what was going on but realized it later. I will say Dr. Keel does put you at ease and explains what he is doing as he proceeds through the treatment. I'll report back after Mondays office visit and fill you all in on the progress. Oh yes he did say that I did not seem to have any calcification so I guess that is a good thing.
3rd visit Dr. Keel was out so I saw Dr. Petrus. He just demonstrated Modeling for me took just a couple of minutes to do and I was to do it three times a day. Basically all it is you just bend the penis at the point of curvature back towards it's natural shape After the second round of injection I was pretty bruised up unlike the first round. I am to see the Doctor in 6 weeks no sex of course for 2 weeks which again is something I don't have to worry about in my present marital state, LOL
Today is 7/6/2017
My next appointment and round of injections will be July 25, 2017 in just a few weeks.
Currently still using the stretcher however I had to order a newer one as the original has become to small so I have been using the new one with extra extensions. I am being fairly aggressive with the stretcher and using it as much as I can daily which can be difficult when you keep having family members trying to walk in on you. They are all aware but get irritated if I lock the door to the room when they need to get in so I have come to the point of just sitting with a towel over my self . Results have been so far very small amount of plaque felt but still an upward bend towards tip but not as pronounced maybe 20 - 25 degrees. Had to order new stretcher as the original was now too short and I needed more extensions. I may have to order a third to get an extra large base as the normal base has gotten fairly tight and my penis is touching both sides on the extension bars. Girth has increase and length is returning to normal. 8-8 1/4 length erect and stretched is 9 - 9 1/4 so progress is being made. Will repost another update soon.
Okay, today is 8/3/17 . Sorry I didn't get back and report on the Doctor visit on July 25th but life goes on. July 25th visit, Dr. Keel said he could feel a definite improvement and I brought up that I felt another damaged area right at the base of the head ( Gland ) He agreed and gave me the numbing shots which of course stings but not too bad. When he injected into the first area it wasn't as painful as the last but when he injected at the base of the gland, remember this is the area where there are a lot of nerves, it hurt like he........ ! The problem he said why it hurt so bad that time was because of where the second area was the numbing injections would have hurt very bad also so it was better to not numb anymore than he had lower at the other area. A good indicator that the Doctor has directly injected into the proper place is he has to push the needle a little harder to get through the scar tissue and that's when it hurts pretty bad. I would say maybe 7 out of 10 scale. You WILL know when he hits the right spot for sure. This visit done then I returned in two days for another round of shots. The 25th visit result was not much bruising similar to the very first shot I had received before. The 27th visit I went in for another round of shots, this time none were hardly noticeable on the numbing shots or I'm just use to it by now. This time he had difficulty feeling the scar tissue so I assume that's a good thing he said it's softening up. This time the injections into the areas didn't hurt as bad as before so I'm not sure as to why if maybe because the tissue was softer now. Wow, like the 2nd round of shots from the i st session a couple of months back really about 6 weeks I bruised up on this round. This time the bruising was a lot worse than after the other time and I couldn't use the stretcher for a couple of days and when I did it was really painful and I had to go a lot lighter on the tension for a while. It actually after a while of stretching seemed to break now the bruised area some and it didn't look quite as bad. I had a lot of swelling after this last shot as well as the bruising. I was very tender to the touch and it was so sensitive it felt like even when I bent over like someone was putting a cigar out on me. Pretty graphic on the detail but it felt like a burn for sure. Monday is my modeling visit. Monday visit we did the modeling and he made sure I was still using my stretcher. In the mean time I also purchased a pump on the recommendation of a gentleman that is on this site that actually lives across the bay from me. I figure it may give a different result that may benefit or be an addition to the stretcher. It seems to work fine but the instructions say only use three times a week at the most and only for about 15 minutes each time. I guess it's just like body building/ lifting weights , you have to have a days rest in between sets to allow for recovery .
Finished the modeling so it will be 6 weeks before I go back. I will try to keep this post updated. In talking with Doctor Keel I found out that he had actually been in on the Xiaflex trial at LSU when he was an intern and told me they would have men lined up almost like an assembly line where they would go from one person to another numbing them then after several was done they would go back to the beginning person and begin the Xiaflex injections. He didn't say how many exactly they did but it sounded like there were a lot of people in the same shape as the rest of us on here. Luckily the FDA approved Xiaflex and here we are today. Dr. Keel said that usually one will start to see positive results towards the end of the 6 week period after the second session of shots so here's hoping. I also am on testosterone as well as some supplements. My last blood test showed my T was in the 700 range now and I'm starting to notice I can achieve an erection from visual stimulation. That's a great jump from where I was before all of this. I started the testosterone and supplements before the peronies but it was slow going. I had completely white hair two years ago and couldn't get aroused at all. My hair is actually turning darker similar to where I was 10 years ago. Wow, The low T, the peronies, stress from being disabled and having to be on disability really has taken a toll on me but for the first time in a long time I actually am starting to feel a little better and have more energy. Long trip my friends but hang in there. I appreciate the comments and I hope the details I leave will ease someone else's mind a bit or at least give you a bit of hope. The alternative would be surgery which is irreversible which was for me personally not an option. I'm glad I'm going this route first even with the minor discomfort. As the old saying goes "Pain only last so long" then you can move on. Good luck everyone. Until next time , Peter
!0/4/2017 Missed leaving a note about my last Doctor's visit as it was pretty much uneventful. Just checking to see where we were at before beginning the third round of injections. I always recommend if you can get an erection and take several pictures using your phone to show the Doctor when you go in for your appointments. If you don't then you will have to have an injection to make you erect so it's just one more shot you'll have to take and it will last for a few hours. Some may like that idea but the first time I got it was early on and it was painful after I had left the office. I suspect it may have had something to do with being erect while wearing pants and trying to walk with an erection without drawing too much attention to you. LOL Most women get concerned if in public a man with a raging boner walks near them. I really can't much blame them because if a guy walked up to me like that I would be somewhat nervous also. LOL. Ok, back on subject, I gave a urine sample as usual then went in with my picture for Doctor Keel to see if any improvement. He said it looked like we were on course and scheduled the first shot of my third round of injections for 10/3.2017 which was yesterday, he was very optimistic about the outcome.
Appointment 10/3/2017 : Showed up for my appointment , went through the routine waiting then back to the room for the injection. A series of numbing injections wait a few minutes to take effect then the Xiaflex injection . We were talking making jokes about how I pretty much know all of the routine , I guess after so many times and all of my research he's pretty much right. The last shot of the second round I was a little concerned we missed the spot because it didn't hurt nearly as bad as the previous one however the Xiaflex injection did hurt as it was being given which believe it or not is a good thing. Remember if the injection doesn't hit the scar tissue or the plaque the pain level is less. The pain doesn't come from the Xiaflex itself I believe but as my Doctor stated when the needle goes in as the scar tissue or plaque is harder than the surrounding tissue so he has to push the needle harder to get into the damaged tissue. Basically the more it hurts on the injection the harder the buildup is so I am glad when it does hurt because I know we hit the target area. Note to oneself, after leaving the office and stopping at a store the urinate don't grab your little buddy to shake . Wow, I forgot and actually grabbed right where the injection had been. All I can say is DAMN ! I then went home and took it easy, a nap, etc. Maybe it's just me but usually I guess it's my bodies reaction to a stressor as such I wind up taking a nap for a while after my visits. As always getting up and down out of the recliner is a little bit of a chore but really just walking around there isn't a lot of pain. I will say that if you bend down to pick something up and especially if you aren't wearing gym shorts or really baggy pants then the compression on your member will be painful so just plan on taking it easy for the rest of the day. This morning I am still sore and very minor bruising if any. Remember each time has been a little different but really guys the overall benefit is going to be worth it. I have tried to have sex a couple of times before this last injection and even though I could get an erection it didn't last long enough for penetration but if I haven't mentioned before I also have to take tons of medications as I have a severe debilitating back problem so I also suffer from ED I suspect partially due to the muscle relaxers and anti- muscle spasm medications. I am taking a lot of other supplements to aide in getting an erection and increasing semen output. They seem to be working well but some of them are also to help my body repair the damaged tissue to where it will be more normal after healing. The results have been pretty good so far as the curvature has been greatly reduced to where if I could maintain an erection well enough I could penetrate. I guess my wife and I are going to have to work on our timing and not go for an extended foreplay so maybe we can achieve the objective. I am scheduled for this Friday ( 10/6/2017 ) for my second shot of round three and I will try to post ASAP. Good luck
10/06/17 Having to post late due to projects around the house. This is Thursday, 10/12/17 so I'll update on the 10/6/17 visit. Went to see Dr. Keel for next round. Same procedure as always urine sample. numbing injections, Xiaflex shot. He said he couldn't feel it that well anymore but it hurt a bit this time so he hit the spot .Went home and rested for a while . I wound up bruising up pretty good this time though it could have partially been from using the stretcher then the pump for extended period of time. If you use a pump remember follow the directions as if you leave it on too long at maximum suction it will cause swelling and will take a day or so for it to go down. Next appointment will be Tuesday, 10/10/17 for modeling.
10/10/17 office visit Dr. Keel Fairhope Urology Fairhope, Al.
Routine visit for modeling and i did ask a question that I had never asked and that was should the modeling be done flaccid or erect. He assured me flaccid was the correct as I had attempted it erect and it was quite painful so I stopped. LOL He did remark how much I bruised up this time and the modeling was a little painful still. He did tell me that usually after the third round of injections one would notice the biggest difference in improvement. Same story don't have sex for two weeks. He said I may not have to do a 4th round of injections but I told him we could as I had received a $5500.00 grant to cover my deductible which was 1500.00 each round. I'll just have to wait and see at my next appointment. I've misplaced my appointment schedule so I have to hunt it down then I will update when the appointment is.
10/12/17
Two days after modeling appointment and six after last injection and still pretty bruised up. I did use the stretcher but only under mild tension as I am still tender. I have been taking my supplements to help with the healing and the ED. I don't think I've mentioned what I've been taking so I guess I should list everything in case someone else wants to use the same procedure.
I make a lotion containing DMSO, tree tea oil, castor oil, Bromelain powder, MSM, apple cider vinegar, and Allantoin. I use this mostly when stretching to help heal the damaged area and promote the growth of healthy tissue. The DMSO is used to carry the other ingredients in to the penis for deeper and better absorption. I usually also wipe DMSO on before applying the solution . The oral supplements are as listed for ED, and promoting the growth of healthy tissue in place of the broken down plaque or scar tissue.
1. L - Arginine
2. Ginseng
3. MSM orally also.
4.Quercetin Dihydrate
5.Epimedium grandfiflorum (Horny Goat Weed)
6.Black Maca root powder
7. Muira Puama Bark powder
8. Tribulus Terrestris PE
9. Pine Bark extract
10. L- Carnitine
11. Damiana Leaf powder
12. Bromelain Powder
13. Garcinia Cambogia decided to try this for weight loss for the heck of it. Hey the less fat in the pubic region the longer the old slong looks, so if you get rid of the extra padding you will actually have more usable length.
All of this is what I'm doing not what I say you should do. There are a lot of other herbs I could add to the list if i could afford it. Being on disability for a severe back injury my funds are limited. You can buy most of these on Ebay but I buy the bulk of my stuff from a company called Bulk Supplements directly. They have good prices and you can buy in various quantities and a big plus is they are listed as having some of the best quality of ingredients.
I have noticed a drastic improvement from 40 degrees down to just a slight turn up at the tip so I think by the time I'm finished it may actually be as straight as an arrow and I'll keep on working on the penis exercises then one day may be close back to the old self.
You have to remember through all of this I am having to try to counter some of the medicines I have to take for my back and muscles so what ever you do make sure your Doctor has a full list of anything you are taking or doing. Now is not the time to hide anything if you want to beat this peronies crap. Good luck till next time and I hope I've provided some help for someone.
Name: lmlalo
Date: August 21, 2017
Level of calcification (if any): Two plaques, top is calcified, but most of the curve comes from lower one.
Result: Good... so far
Number Of Shots: Started second cycle today (three shots total so far)
Doctor: Dr Stahl, NY
Modeling: Traction 2-4 hours a day after bruising, swelling and pain have subsided
Summary: Like most, I was a bit nervous about starting Xiaflex. But after six or so months of verapamil and worsening curvature, we decided to move on to Xiaflex. I have two plaques, one in the middle of the shaft, causing a 60 degree bend, and one closer to the top, just under the head, causing some hour glassing. We decided to attack the one in the middle as that was the one causing the most deformation and making sex feel unstable. The first shots were done six weeks ago, two days apart. I started and stayed at around two hours of traction a day, sometimes getting to three or four hours over the past six weeks. I went to start my second round today and my uro induced an erection to see how it went and I've gone from 60 degrees to 45 degrees. Pretty good right out of the gate. We're going to keep attacking the same plaque, but might move on the top one if it continues to be effective. Overall, mild pain, bruising and swelling. For those considering it, take the plunge. My dick is still a bit of a mess, but it looks better and feels more stable. Excited to see where the next three rounds gets me.
I have done about 30 shots over the last year and a half with absolutely NO RESULTS! Done by 3 different Drs who do about 20 shots per week on patients. Finally devided to go with the plication procedure!
Name: Coube1 (curved one)
Date: 11/5/2017
Level of calcification (if any): Minor, if any
Result: Very good
Number Of Shots: 4x2 = 8 total
Doctor: Dr. Lue, UCSF
Modeling: I used the ESL40 traction device approximately 2 hours/day week days, 4 hours/day weekends
Summary: Injury occurred February 2016, first noticed slight curvature August 2016, started treatment December 2016. Originally had an upward curvature of about 60 degrees. 6 weeks after 4th treatment curvature is now about 15 degrees. Wife says it now looks like it did before injury but it is a bit thinner than it was beyond site of injury.
Name: lmlalo
Date: November 7, 2017
Level of calcification (if any): I now have three plaques. Top is calcified, but most of the curve comes from lower two.
Result: Very happy. Going back in two weeks to measure curve, but definite reduction.
Number Of Shots: Three cycles complete (six shots), about a month out from my lat shot.
Doctor: Dr Stahl, NY
Modeling: Traction about 4 or five hours daily.
Summary: I had two plaques to start with, and developed a third during the Xiaflex process (unrelated). Which was pretty depressing. The first two cycles were focused on the first plaque that was causing the curve. The most recent cycle we focused on the new plaque which was causing a second area of curvature. It's about a month out from my last cycle and I'm going pretty hard with the traction and am happy to report the curvature on the new, third plaque has gone down considerably. My penis looks something approaching normal, and my sexual confidence is returning. Will ask my uro to focus on the other area of curve for the fourth cycle, and if that reduces the curvature in that area then I'll be a pretty happy guy. I really recommend trying Xiaflex, and also trying your best to stick with traction. I have good days and bad days, but there seem to be more of the former lately. Feel free to DM me with any questions.
Copy paste from other topic:
Losecurve
#of cycles to date: 3 (2 shots each)
Results: none (curve is still the same as when I started)
Next: 4th cycle is next week - December 9, 10
Doctor: Culley Carson in Chapel Hill, NC
Updated results:
I get a different measurement if I use the Peyronies Disease Measuring device than if I print a picture and use a protractor. With the Peyronies Disease device, I am measuring around 30 degrees and my starting was about 50-55 degrees. With graph paper, I measured a starting curvature of 68 degrees and a current curvature of 56 degrees. In either case, I am about 20-25 degrees less. I have been through 8 cycles and there won't be any more. So, I am hoping by my next visit in March that traction and VED will show some huge improvement beyond what I currently have.
I am responding to this forum in anticipation of my first round of Xiaflex injections. I thank everyone who has posted previous to me. With your posts, I am optimistic with my upcoming appointment. I will hopefully post here in the future with updates on my experience. Wish me luck!
I went through 3 series of injections...6 shots. I declined more injections.
I had some relief in the bend. The injections were, of course, painful, but the duration of the injection is short.
I had swelling and bruising with all shots. Most painful after effect was swelling at the base of the shaft. It remains sensitive/painful, several months later. I had no massive swelling or trauma from the injections.
My series went from early 2017 into June. Some of the bend has returned. The tunica albeguina seems more "rigid" now than before. It does not stretch as before. I do not know if this is a result of the injections, or just a continuation of the disease.
Johns Hopkins has recommended IPP surgery. I have been a coward, so far. I have seen a marked decrease in penile length and girth as a result of the disease, and they state the surgery will reduce length more. Do not know if it is worth it.
I do not know if continued injections would be of any help. The loss of elasticity has bothered me most of all.
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.
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.
Is a curve of 80 degrees worth trying Xialflex treatment or is surgery the only way to go?
Traction and/or VED can help you regain length.
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.
I had zero improvement after 7 rounds (14 injections). Started at a 50 degree curvature and I'm still there.
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.
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.
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.
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...)
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.
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?
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.
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.
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.
Congrats on your success Dale! I'd consider traction and low dose nightly generic cialis to regain lost length.
Thanks, I appreciate the information, I will give it a try.
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.
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?
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.
For loss of length I think traction is preferred over VED.
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
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.
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 ?
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.
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).
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.
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.