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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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Author Topic: Please post your results  (Read 32470 times)

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tonyode

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Re: Please post your results
« Reply #50 on: April 18, 2019, 10:01:23 AM »

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

Bubba dawg

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Re: Please post your results
« Reply #51 on: April 19, 2019, 04:30:47 AM »

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

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
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tonyode

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Re: Please post your results
« Reply #52 on: May 17, 2019, 10:04:35 AM »

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

Bubba dawg

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Re: Please post your results
« Reply #53 on: May 17, 2019, 02:23:55 PM »

Congratulations Tony!
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5 Rounds of Xiaflex. Good results.

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

TonySa

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Re: Please post your results
« Reply #54 on: May 18, 2019, 03:21:39 PM »

Wow, very impressive.  During xiaflex we’re you doing any other treatments such as pentox, VED. Or traction.
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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.

Lester7

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Re: Please post your results
« Reply #55 on: May 18, 2019, 05:43:56 PM »

Awesome! Congratulations!
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tonyode

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Re: Please post your results
« Reply #56 on: May 22, 2019, 11:17:13 AM »

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

Bleh

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Re: Please post your results
« Reply #57 on: May 31, 2019, 06:47:39 PM »

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

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

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

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Re: Please post your results
« Reply #58 on: February 06, 2020, 10:45:09 PM »

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

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

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

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

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

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Re: Please post your results
« Reply #59 on: May 18, 2020, 04:35:02 PM »

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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Shane43

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Re: Please post your results
« Reply #60 on: November 10, 2020, 01:03:13 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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62YO, 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. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.

Manta

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Re: Please post your results
« Reply #61 on: May 13, 2021, 04:58:50 PM »


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

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

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

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Re: Please post your results
« Reply #62 on: May 13, 2021, 05:06:07 PM »

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

Shane43

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Re: Please post your results
« Reply #63 on: May 13, 2021, 10:59:30 PM »

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

Clutch

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Re: Please post your results
« Reply #64 on: July 13, 2021, 12:06:56 PM »

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

BrettC

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Re: Please post your results
« Reply #65 on: August 03, 2021, 03:23:21 PM »

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

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

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

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

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50 years old
Diagnosed just over a year and a half with 40-45 degree upward bend after starting with 60-65 degrees.
Completed one full round of treatments with Xiaflex (8 injections) 
Using Restorex and oral medications as well (Pentox, Cialis)

roguerider73

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Re: Please post your results
« Reply #66 on: August 31, 2021, 07:51:43 PM »

This is my experience with Xiaflex.

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

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

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

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

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

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

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

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

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Re: Please post your results
« Reply #67 on: June 30, 2022, 06:58:06 AM »

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

Who was your doctor please?
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IwillbeatPD

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Re: Please post your results
« Reply #68 on: Today at 01:40:25 AM »

Hey everyone!

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

Thoughts?
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36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.
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