newbie - progressing past Peyronies denial

[crillium]

First, kudos to everyone who contributes to this board. It strikes me that some courage is needed to be honest about this topic (or maybe I'm just being a wimp, either way I appreciate this resource)!!

I am trying to move past the stage of denial about Peyronies and proceed to treatment stage. My urologist is recommending Xiaflex treatment, but I am wondering about a couple of things:

1) does anyone in the Central Florida area (Orlando) -- or anywhere else for that matter -- have experience with Xiaflex treatment that they care to share?
2) is there a recommended urologist in the Central Florida area (Orlando) that has good track record with Xiaflex?
3) what else do I need to consider at this stage?  

Based on reading through these boards, it sounded like the initial treatments with Xiaflex a few years ago produced mixed (in some cases, horrifying) results. My urologist mentions an 80% success rate. Is that accurate, or is he being way too optimistic? Have the negatives, e.g., poor/inexperienced administration of the injections gotten better recently?

I am not affiliated with any doctor, company, or anything else related to this topic - just a patient looking for some answers. Based on what I've read you all are the best persons to help me proceed past the denial stage and move on a positive path forward. I've taken the initial steps of VED treatment and supplements without any improvement, so I think my next steps are to take comments and establish a baseline for moving forward to next stage -

Many thanks in advance to any/all suggestions/comments!

[Jonbinspain]

Welcome to the forum.

I would suggest that you read the forum thread on Xiaflex. You don't say much about the severity of your condition or how long since you were diagnosed, but be aware that Xialflex is only suitable in certain cases.

Re a Xialflex qualified Urologist in Florida, there is a list of well regarded Uros on the site.  

[QuackAttack]

Crillium,

How long have you had Peyronies? Has your URO done an ultrasound and is you plaque calcified?

[Jimbruski]

Crillium,

I had absoulety no success with Xiaflex, however my Peyronies was chronic when I got the injections, so I agree with QuackAttack; find out how far along your Peyronies has progressed through an ultrasound.  Your choice to use or not use Xiaflex may be answered for you.

Jimbruski

[crillium]

Wow, guys, I so appreciate your responses -- I had no idea they would be so quick. I will check for responses far more consistently in the future.

Jimbruski - interesting point for me to consider whether Xiaflex will even be the correct treatment, once I find out what stage and how far along my Peyronies might be. When I first realized I had it 2-3 years ago, my MD said "oh yeah, I've got 50-60 patients I've seen that have Peyronies. Not sure there's anything you can do for it, but here's the name of a URO." The URO suggested first treating with VED, and I did that for several months with no effect on the Peyronies (last year). So that's kind of where I am, never having taken any further steps for treatment after the VED. Just been in denial, fighting the depression about it, you probably know the story.

QuackAttack - I would say at least 2-3 years. I have not had ultrasound done yet, and would anticipate this would be one of the first diagnosis steps --- so I will need to answer your questions after that's been done. One of the concerns I have about current URO is that he is suggesting Xiaflex without having taken those steps yet, although in fairness perhaps he is waiting for me to consent to path forward since I was there for another issue (testo pellets). When he asked how everything was going, I reminded him about my Peyronies --- and that's when he suggested I read about Xiaflex on this forum and get back to him with decision.

Jonbinspain - Thanks for your suggestion. I have read quite a bit in the threads about Xiaflex, but it was hard to get past that first post about the horrors of mistreatment. I've been thinking about this for 3 weeks after reading that thread, wondering if Xiaflex treatement is like playing Russion Roulette -- you get the bullet (bad injection) and you're in a much worse place!

As for severity of condition, I used the protractor approach recommended on this forum and find it to be 90 degrees, with very slight bend (mostly without any bend when erect). No pain, and no problems with erection or masturbation, but I'm recently divorced and will need to do something if it's going to prevent effective intercourse.

I found a well-regarded Xiaflex Urologist here locally from the list on this forum. I am so grateful for that, because as I say my current URO seems to be a newbie with Xiaflex.

Again thanks for your responses, and I will post my diagnosis when I am able to arrange appointment with this recommended URO. His website seems very professional, and he seems to specialize in the more advanced treatments, including Xiaflex. I am looking forward to seeing how he is in person, and how his office runs. My current URO's office is way too busy, everyone's waiting for like 2-3 hours and he's just totally swamped. I can't imagine those are the best conditions for a Xiaflex newbie (he mentioned he just started treating patients with Xiaflex, but these first 2 patients were only 2 months into treatment).

One of the things this URO said was that Xiaflex has 80% success rate. That doesn't seem to match with what I've been reading on this forum, but I don't know how I could ever quantify that accuracy based on anecdotal evidence.

Sorry for lengthy post, just wanted to respond to everyone. Thanks!

[Gutted]

Interesting Crillium ....... Uro quoted 80% success rate to you. I noticed a few posts from members on here where Uro's are quoting them very high Xiaflex success rates prior to treatment.

The Uro I saw for my initial appt was also extremely positive about it (and I didn't even ask him about Xiaflex) quoting similarly high success rates in their trials to get it approved as an NHS (UK welfare state paid medical service) treatment.

I agree with you ..... the anecdotal evidence on here suggests that Xiaflex is nowhere near that successful and also with many potential side effects that were not mentioned to me by my Uro

It will be interesting to see the responses in this thread to this point.....

[Jimbruski]

Crillium,

Good luck with the new uro,  and by all means please post what the diagnosis is and the treatment suggested.  One thing,  you say that when erect there is no bend!!  That is a bit confusing to me as I show more bend when erect.
Well, the ultrasound will certainly answer some questions.

Again,  good luck

Jimbruski

[Jonbinspain]

A good  Uro, who has experience of treating patients with Xiaflex, should be able to inform you whether Xiaflex is suitable in your case or not. It's very expensive, and the last thing you need is to shell out thousands for injections that have a reduced chance of success from an inexperienced Doctor.

There are various factors involved. Degree of curvature, location(s) and number of plaque, whether calcification is present, etc. I should point out that having had calcified plaque myself, I contacted the manufacturer to enquire whether Xiaflex would be suitable. Their response was that they honestly didn't know. No sufferers with calcified plaque had been included in their trials. I suppose for obvious reasons!  

[crillium]

Jimbruski --- when I said no bend when erect, I was referring to no side bend. The 90 degree bend is directly forward when erect. Hope this clarifies.

Jonbinspain --- good to know about the calcified plaque reality. That is a great point of discussion with URO after ultrasound. From what you've surmised, do you have the thought that maybe Xiaflex will not work on calcified plaque?

Crillium

[Jonbinspain]

It was obviously a disclaimer from the company.

It's understandable why calcified plaque was omitted from the trials. I mean why would they take the risk?  They obviously want results to look as good as possible.

I would ask the doctor directly, if the need arises. Has he ever treated anyone with calcified plaque and what were the results?  

[Frank55]

Exactly Jon. You have to wonder how much of the Xiaflex "success" rates are based on happy data. Meaning relatively modest non-calcified Peyronies cases, while more severe cases were deliberately excluded. Sorry if that sounds cynical, but that does not mean it is not possible.

I'd also make sure it is clarified what they consider to be a success. My case is a 50 degree curvature to the left. Non-calcified. But the local urologist said he thought they could remove "about half" of the issue using Xiaflex. So I'm to be happy living with a 25 degree curvature? I don't think so. But I'll give him credit for being honest about the potential result.

I'm passing on Xiaflex not only because of the expense - it is also for a strong suspicion that I'd go through months of the 3 to 4 sets of injections, considerable expense, discomfort etc. and still have an unacceptable level of curvature at the end.

Which is why I'm have the Egydio procedure in early May. Nervous about that but it has to be done.

[crillium]

Guys - good comments to be taken into advisement. Haven't seen the Xiaflex expense info yet. At this point I'm just trying to figure out what options are out there.

Frank55 - what is the Egydio procedure you mention?

[Jimbruski]

Crillium,

My Xiaflex treatments were covered by insurance, but the Explanation of Benefits statement that I get from the insurance company listed each Xiaflex treatment (two days of shots and a follow up appointment) at around $5500.  I think they classify Xiaflex shots as surgery but not positive about that.

Jimbruski