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Author Topic: start first round of Xiaflex tomorrow  (Read 566 times)

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jfest

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start first round of Xiaflex tomorrow
« on: July 02, 2019, 05:49:09 PM »

I start my Xiaflex injections tomorrow. Here's hoping this works out well. I have had some success using restorex over the last three months. I'm hopeful that continuing to use it (if I can tolerate it) along with the injections will have a positive effect on my curve.

The concern I have is the hour glassing at the base. I think I remember reading one member (gingo?) mentioning that his hour glassing did disappear after his Xiaflex injections. Hope to see the same relief too. If not, I wonder if anybody has managed to use VED successfully on hour glassing at the base? I've only seen posts where VED was effective at the top portion.

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49 years old. Diagnosed with Peyronies in September 2018. 45 degree curvature to the left upon penile duplex. Currently using restorex. On cialis, pentox and pending approval for xiaflex

TonySa

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Re: start first round of Xiaflex tomorrow
« Reply #1 on: July 02, 2019, 09:27:15 PM »

As VED is along the entire length of the penis, only makes sense it could help w the base that is within the tube. 
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

Bubba dawg

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Re: start first round of Xiaflex tomorrow
« Reply #2 on: July 03, 2019, 12:16:59 AM »

Good luck with your treatment. I had great success just doing xiaflex and hand modeling. Took 5 rounds. I didnt have hour glassing. A good many success stories here. Some had no luck with it
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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.

jfest

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Re: start first round of Xiaflex tomorrow
« Reply #3 on: July 10, 2019, 07:58:19 PM »

Finished my first two rounds on July 3th and July 5th. First shot hurt more than the second, but neither were bad. I was fairly swollen for a couple of days. By Sunday I was already modeling by hand. I was told NOT to do any traction or sexual activity for the first two weeks. After that, I'll have four weeks where I can engage in sexual activity and traction before my next round. 

Also, I wasn't given much information on how to model, so I've been using the Xiaflex manufacturer's website. I was pretty disappointed at that. I'd like to get feedback from those who started using traction with xiaflex. Did they start right after the shots, or were they told to wait as well?
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49 years old. Diagnosed with Peyronies in September 2018. 45 degree curvature to the left upon penile duplex. Currently using restorex. On cialis, pentox and pending approval for xiaflex

pfract

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Re: start first round of Xiaflex tomorrow
« Reply #4 on: July 10, 2019, 09:14:21 PM »

Good luck with the xiaflex. Now that you mention gringo... i can't remember if it was him or quackattack. One of the two, actually tried a VED  on the side of his penis and had a false penile fracture. Also a false fracture because of the xiaflex first time around. Even had a medical paper done on him, and his attempt. (i checked pubmed and found the paper and talked to him about it. So be very carefull.

BillSmith

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Re: start first round of Xiaflex tomorrow
« Reply #5 on: July 11, 2019, 09:34:43 AM »

Jfest- I did 8 rounds 2 shots per round of Xiaflex with restorex and had great success. I used restorex aggressively (doc encouraged this) the first day.  I was very careful but applied a bunch of tension. The reason I mention this is I feel like my greatest improvement happened within the first two weeks of the injection and you said you were told to wait for two weeks before you begin. Just an FYI. Also no sex for 4 (drs orders)weeks seemed about right. I also did aggressive hand modeling daily. Just info - everyone’s situation is different.
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tonyode

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Re: start first round of Xiaflex tomorrow
« Reply #6 on: July 11, 2019, 04:19:03 PM »

JFest....do what you feel is best for you and trust your doc if you are feeling about about him/her. I didn't use any devices, and started with a 55 degree curve at base and indentation. I did 3 total rounds, 6 shots and the doc and I agree to stop at that point as I was at less than 10 degrees! I am not saying the devices don't work, but I did the hand modeling myself and just stretched quite a bit, and aggressively as much as I could. And it obviously worked for me. I am not perfect, have some hour glassing/thinning at the base. But compared to where I was, I was pretty pleased with my results. I also felt like I had a great doc who took all the time in the world and was extremely thorough as far as examining(ultrasound) and measuring curve as we went along. Just hang in there. Its a marathon, not a sprint. Emotions up and down. I was frustrated and then all of a sudden things got better. Good luck!
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

BillSmith

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Re: start first round of Xiaflex tomorrow
« Reply #7 on: July 11, 2019, 04:45:32 PM »

I agree . tonyode

Stretch as aggressively as you can
Marathon not sprint
Emotions up and down
Times of frustration
Things got better

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TonySa

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Re: start first round of Xiaflex tomorrow
« Reply #8 on: July 12, 2019, 03:01:28 PM »

My doc (dr Lue) instructed to wait 2-4 days after second injection each
Round and to do at least 4 hrs traction daily and preferably more.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

rojenner

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Re: start first round of Xiaflex tomorrow
« Reply #9 on: July 14, 2019, 12:01:11 AM »

JFest

I did 2 rounds of Xiaflex with hand modeling only - no change.   2 weeks ago I did a 3rd round of Xiaflex and started traction the day after with Restorex.  Hoping this will have good result but I agree this is a marathon and not setting my hope too high.   
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Age 63.  Diagnosed summer 2017.  No specific injury event.   Tried a Priapus shot - no improvement.  Just had 2nd Xiaflex shot March 2019.  Upward curving (50+degrees) with minor bottleneck in the middle.

jfest

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Re: start first round of Xiaflex tomorrow
« Reply #10 on: July 19, 2019, 04:29:26 PM »

TonySa,

Did Dr. Lue recommend continual traction up until your next shot? Just curious if there is a "window" whereby doing traction after a shot is most effective, and then starts to taper off?
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49 years old. Diagnosed with Peyronies in September 2018. 45 degree curvature to the left upon penile duplex. Currently using restorex. On cialis, pentox and pending approval for xiaflex

TonySa

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Re: start first round of Xiaflex tomorrow
« Reply #11 on: July 20, 2019, 11:36:04 AM »

Yes, daily after second shot of each round until the next round.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

jfest

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Re: start first round of Xiaflex tomorrow
« Reply #12 on: October 14, 2019, 09:44:59 PM »

Just to provide an update, going on my third round this week. Since I've started Xiaflex, I've seen a slight improvement. At my worst it was 45 degrees (when they did the ultra sound\measurement). Now it looks to be 20 - 25 degrees. I was never straight as I always had around a 10 degree bend (never really measured). Hourglass is still present at the bottom third of my penis. As for length, no change. So far injections have been painless (knocks on wood). With daily Cialis erections are strong. Been on Pentox the past 7 months. Only pain I get is when I get an erection. But that eventually subsides once fully hard.

If hourglass doesn't get any better (which I suspect it won't), I'll move on to VED. The hourglass and hinge really interfere with intercourse. We'll see where this goes, but I suspect I will eventually have to look at surgical options. If so, I might opt for an implant.
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49 years old. Diagnosed with Peyronies in September 2018. 45 degree curvature to the left upon penile duplex. Currently using restorex. On cialis, pentox and pending approval for xiaflex

TonySa

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Re: start first round of Xiaflex tomorrow
« Reply #13 on: October 15, 2019, 10:06:41 PM »

Jfest, if it’s going so well, why do you anticipate surgery?
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

jfest

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Re: start first round of Xiaflex tomorrow
« Reply #14 on: October 15, 2019, 10:45:51 PM »

It's because the hinge and hour glassing isn't really getting better. I can have intercourse, but it's unstable and I have to be careful. Since you've got an implant, I'm assuming that isn't an issue at all? Also, I've read that implants and incision/grafting correct hour glassing. But it seems that grafting often leads to Erectile Dysfunction. I guess that only leaves an implant as a final option.
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49 years old. Diagnosed with Peyronies in September 2018. 45 degree curvature to the left upon penile duplex. Currently using restorex. On cialis, pentox and pending approval for xiaflex
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