Xiaflex next week

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dangerdave66

Hello everyone. Next week I begin xiaflex shots. Hoping for good results. After reading here i see that some doctors are doing sonogram before shots, weeks before or day of I don't know. But the larger question is should I be requesting this or should I rely on the Dr to order or not?  

JohnR

Sonogram should have been done at the first visit or even before the first actual Dr consultation.  
50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...ED issues, major anxiety issues now.

TonySa

I know some docs will do xiaflex w/o sonogram but they will have no baseline measurements of the plaque.
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.

dangerdave66

I asked again about it and was told they go by feel. It's pretty pronounced so I imagine at this stage that'll work. Then maybe later, after some has disappeared, do the SG to know where to target?

TonySa

Before the injection most docs induce an erection, Mark the location and once erection goes down injects at Mark by feel.
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.

dangerdave66

So, reporting back a week later after shot #1 and #2 (last Monday and Thursday).

For starters, flaccid and no topical numbing. Just a spray of alcohol (which kind of took the edge off being so cold) and then Doc squeezed the crap out of the plaque and stabbed it with a needle several times. Yea, it hurt but frankly not as much as I thought it would. I bet on the actual head I would have passed out.

Immediately following, a bit of swelling and then came the bruising rush. Kind of looked like a purple potato.

I'm doing my daily 3x stretching (sometimes more) although I'm not impressed with said length. Damn, I lost a lot of length with this Peyronies Disease.

For the moment it's interesting that I've had very few erections, and those were mild, and none spontaneous. I'm a bit fearful of them due to the warnings about ruptures.  Does anyone have any data on what activity causes a rupture? Mild erections vs hard erections vs hand jobs vs blow jobs. And of course I've referring to after the 2 week hiatus after the 2nd shot in a cycle.

tiagofil


alec

Why would you use Xiaflex without ultrasound if the plaque can be seen on the sonogram? I do not understand. From what I understand you can use Xiaflex guided by ultrasound, find the plaque and inject. Why make a mark with a pen on a skin that is moving? Why inject for an erection?  
30yrs, diagnosed in feb. 2018 after possible injury (not sure), 4 plaques, 4 dents, S-surve, 30° right/45° up curve, tingle in the legs, sometimes penile pain an depressed.

dangerdave66



The erections I'm writing about are those that are "mind driven", i.e. porn, sexy talk, and laying hands on my wife. I'm not touching Jr at all but he's "up and ready to get in the game" if called to do so. I just want to know if that type of erection (post bruising) is safe to allow to build. Now I'll add that any rock hard erection with the Peyronies Disease nowadays comes with pain (due to plaque) but I've dealt with that pain for over a year.

dangerdave66



I'm not really sure. The DR I have basically stated he doesn't use US, at least not at first. In my case the plaque block is easy to find and feel so I'm not overly concerned he's being caviler with this treatment.

tiagofil


dangerdave66

Quote from: tiagofil on June 19, 2018, 05:29:29 PM
I think you shouldn't worry about having erections. Two of the four penile ruptures happened to people who engaged in sexual activity inside the two weeks after the injections. If you didn't have any big hematoma and your bruising is getting better you can feel confident about treatment. Let's hope the curvature improves.

Thanks for the feedback. So far so good. It's nearly a week since cycle 1 shot 2 and just a slight hint of purple is left. Overall it feels pretty good. I do sense a lessening of the plaque in the center area of the shaft. The erections I'm getting are still curved but are less than prior to treatment. If I could just remember to stretch...

alec

did you measure baseline curve?
30yrs, diagnosed in feb. 2018 after possible injury (not sure), 4 plaques, 4 dents, S-surve, 30° right/45° up curve, tingle in the legs, sometimes penile pain an depressed.

dangerdave66



I did not. I do a picture with about a 45 deg bend.

WhatNext81

Remeber to stretch. Do it after you've gone to the bathroom. It's easier for some to remember that way. It's already out. Those who don't stretch or use traction see less results than those that do.  
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dangerdave66



I do have a traction device and had asked my DR about using it during the xiaflex treatments. He said to not use it, instead just stick to the published treatment process.

TonySa

Dr Lue, who has done thousands of injections insists xiaflex success depends on adding 2-3 hours of stretching a day.
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.

WhatNext81

Dangerdave66

Did your Dr tell you why you shouldn't use traction? Is it just you and your case specifically, or is this his standard protocol for treatment? Personal expierence and reading what others on here say, traction is beneficial. But, it's up to you. Also, both you and your dr should be on the same page during your course of treatment.  
Please go to PROFILE then FORUM PROFILE to replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc

TonySa

Def great to discuss w doc, but if he cannot explain why your case would be different—in such a case I wouldn't follow his direction of no traction if he's just not supportive of it.  Ultimately doc's work for us, not vice versa...just my two cents.
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.

Christopher1

For Xiaflex, seek out the most experienced urologist you can find.
Snake Diet + 5-day fasts + pentox + NeoV's stretching routine + Mito Red Light. Curvature 99% gone.

I also used Todd Capistrant's "Fascial Distortion Model" to help my curvature. Start slowly.

WhatNext81

If you choose, you can switch drs pretty easily if you've already been approved. Find a new dr, let your current dr know and also follow up with your insurance by calling and letting them know. Your current dr might need to give the referral for insurance purposes, so honesty always works best. Being fully in the loop will help cut down on any discrepancies and speed up the transition.  
Please go to PROFILE then FORUM PROFILE to replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc