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Author Topic: My Xiaflex experience so far in Phoenix, AZ  (Read 2096 times)

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My Xiaflex experience so far in Phoenix, AZ
« on: March 22, 2015, 12:46:24 AM »

My doctor does it this way: On week 1, you go in on Wednesday (you get an artificial erection and he makes a marking on the penis) and Thursday (the first shot of Xiaflex).  Then the following week you go in Monday (the second shot of Xiaflex) and Thursday (for the doctor-performed modeling). 

On week 1, Wednesday I went in and the doctor injected my penis with something that makes it erect.  It stayed erect for about 2 hours after I left the doctor's office, so that was kind of strange.  Anyway, after the penis became erect, he used a permanent marker and drew a line on the penis.  That was it, and I left with my erection.

On week 1, second day:   The absolute worst part of all this for me was the shot of anesthetic the doctor gave me before the Xiaflex shot.  He uses a long needle, which I believe he injects into the penis near the base, or at the base and into the penis.  I just couldn't watch this needle being inserted, so I'm guessing as to where it went. After he did this injection of the anesthetic I started hyperventilating.  I've never had a panic attack, but this might have been one.  I asked the doctor for some Valiums for the next few shots like this.

After about 10-15 minutes, he came back in and gave me the 1st shot of Xiaflex. The anesthetic numbed everything, so I didn't feel the Xiaflex shot at all.  That was pretty easy.

I was afraid to look at my penis all throughout the day because of what some people had gone through after the shots.  Before I went to bed, I took a look and there was some bruising on the top of the penis, but almost no pain at all.  The only pain that was there came from the shot of anesthetic.   

Then the day after, there's bruising on the top of the penis.  I didn't have to take any pain medication at all.  I'm worried about having nighttime erections because I'm hoping not to have any ruptures. 

So anyway that was the end of week 1.  No major difficulties, except for a little bit of discomfort from where the anesthetic was injected.

Then the following week I went in Monday (for the second shot of Xiaflex).  That was pretty much a repeat of the previous visit.  This time I had taken the Valium and I didn't have much if any anxiety for this visit.  So that was all for that visit.

Thursday I went in for the doctor-performed modeling.  *Another* shot of that damned anesthetic is necessary for the modeling.  He pulled and twisted my penis, but I barely felt anything.  After the anesthetic wore off, I didn't really feel any discomfort except where the anesthetic was injected.

So that was it for the first cycle of shots.  I have been doing the at-home modeling and stretching exercises as they direct in the brochure.  I believe I started out at around 80 degrees upward curve, and I would estimate that now it's maybe 70 degrees. My penis is also more pliable when erect instead of the curve being so hardened.  So there was some improvement after just the first cycle.  I am going to do the second round of shots the first week of April. 

I'll have to wait and see results before I decide whether to continue with rounds 3 and 4.  I got a grant from the Healthwell Foundation, which covered all of the first round, and most of the second round.  For rounds 3 & 4, I would have to pay about $1,000 for the Xiaflex, and then the costs of the doctor visits.  I'll cross that bridge when I come to it.

The specialty pharmacy that sends the Xiaflex to my doctor's office (US Bioservices) doesn't submit the claim to my insurance until after the *second* round is shipped out.  I think this is very strange and I don't understand what their motive is.  Seems like the only medical provider (ever) who doesn't want to get paid in a timely manner.  I also think the way they charge for the Xiaflex is convoluted (the first round is $6,000 and subsequent rounds are $3,000). 

Side note:  I am 53 I first got Peyronie's in the summer of 2013,  so it was over a year and a half until I started the treatment.  My doctor wanted to wait until everything had stabilized before proceeding.


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Re: My Xiaflex experience so far in Phoenix, AZ
« Reply #1 on: March 23, 2015, 12:25:55 AM »

Thank you Arnold for posting your experience. I remember the anesthetic a previous doctor gave me each time prior to my 6 rounds of unsuccessful Verapamil shots. My current doctor doesn't use an anesthetic for my Xiaflex shots and I'm so grateful.

The Xiaflex shots are uncomfortable but manageable for me. I wouldn't worry about rupture during night time erections as long as you don't sleep on your stomach and sleep naked. If anything the erections are good thing during the treatments since the plaque is more pliable during the first few weeks, also allowing for the straightening exercises.  I continue to take 2.5 mg of cialis during the shots and feel it is beneficial, albeit a little uncomfortable during the first week when it can wake me up, but in my half-sleep I'm able to do the straightening exercises, especially during my morning erections. 

Thanks again for posting and good luck to you!
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