xiaflex treatment with Dr. Lue at UCSF

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Joe Barely Cares

Obviously this is a long story, so I will attempt to keep it brief, will also include a TL;DR at the bottom for those so inclined.

My Peyronie's hit when I was 29, just before my 30th birthday, and I am now 36. I have seen Dr. Lue since the beginning of the problem and find him to be a very kind man with an excellent bedside manner, but in my case, I feel very much let down by him and the treatment provided as it relates to xiaflex. Not to mention the issues I am continuing to go through with my insurance company.

I do not have the bend like most, mine is more of the hourglassing variety, but even that is a bit of a misnomer. Suffice it to say there is a significant narrowing that starts maybe 80 percent of the way towards the glans. I hope that makes sense. The first time it hit, he put me on pentox double dose so (800mg/ 3 x day). That in and of itself caused issues but that is for another topic. For a while things seemed to settle instead of getting worse, so that was some relief.

Fast forward to about a year ago and the Peyronie's returned for a second time. Did not have an injury that I remember and am very careful these days when it comes to intercourse, masturbation, etc. In any event, he saw me and mentioned that I might be a candidate for the xiaflex shots. I came here, read everything I could, and decided to go ahead with the treatment. I called 3 separate times to my insurance to make sure the shots were covered. I was told repeatedly they were, yet here I sit 7000 dollars out of pocket. If at any time, I had been informed this would be the case, I would have not opted for the shots. Very disappointed in the way this has transpired.

I had a lot of nerves going in but Dr. Lue kept telling me, "he thought he could help me". Though things aren't the way they used to be, my penis works ok most of the time. The thought of total impotence from penile fracture was weighing heavily on me. I wish I had focused my concerns elsewhere. I was scheduled for two rounds of shots but because my condition was not the "classic" case, he wanted to go slowly and be very precise with the injection sites. He did an ultrasound pre-shots and used a marker to indicate where exactly he would be placing the syringe. He gave me a numbing shot (not fun) and then proceeded with the xiaflex. There were three injections in all with the first treatment cycle.

Recovery was very painful. I was out of work the first two days and then it was still very tender for at least a month afterwards. I did all the stretching exercises prescribed but saw no improvement whatsoever and the exercises were very painful to perform. After about a month I went back to see him. At that time I let him know I was not at all interested in more shots and I was done fighting. I will live with what I have going forward. Little did I know at that time, the shots had actually caused another recurrence of Peyronie's. It is now currently in an active stage. I am so tired from fighting against the tide, I literally have given up hope of the situation improving. Who knows...maybe that attitude may allow space for healing. I don't honestly know.

In summation: If you are considering this treatment, I really hope that you think very carefully about what the possible outcomes may be. I was very reluctant going in and if I had known then, what I am experiencing now (recurrence of Peyronie's/issues with insurance) I absolutely would not have elected for the treatment. Make sure you are thorough with both your care provider and your insurance company, especially the insurance company.

TL:DR: I got the shots against my better judgement and ended up with more Peyronie's and a lot less money in my pocket.

Would be more than happy to answer any questions others may have if they are considering the treatment. Part of what spurred me forward was that even if the treatment didn't work for me, just having more numbers in the study and more information may help someone else who has the same issue and it may do some good for them if not for me.

I really am glad a place like this exists. It's a brutal condition that strikes deep towards what it means to be a man. I wouldn't wish this on my worst enemy and I have a great deal of empathy for those who have it. I hope others have a more positive outcome than I did, but I felt my story should be shared.  

nemo

Joe, very sorry to hear about your lack of results with Xiaflex - I have no doubt you were in the hands of an expert and also did your part, it sounds like the treatment simply didn't work for whatever reason. Im curious though, why do you attribute new Peyronies Disease activity to the Xiaflex shots - is it coincidental timing, location, or both?  

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

james1947

Joe

I would like first to thank you for posting. As you have stated:
Quote....even if the treatment didn't work for me, just having more numbers in the study and more information may help someone else who has the same issue and it may do some good for them if not for me.
More information we have, more base to take a decision on the subject.
I would like to add two things:
1. You should fight the insurance company to pay all, especially as you was not told that you will have a huge co-pay. You may want to try also to go on the manufacturer, many forum members got very reduced co-payment as Auxillium paid for the rest.
2. Most people got significant improvements after 4 shots sessions, some even more. It is not too early to stop the treatment after just one round? Of course, is your penis and your decision, I am just proposing you to think a second time to continue or not.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Head Up

Quote from: Joe Barely Cares on February 20, 2015, 12:47:03 PM
The first time it hit, he put me on pentox double dose so (800mg/ 3 x day). That in and of itself caused issues but that is for another topic.

Joe-

Can you please go into detail on the issues Pentox caused. If here isn't the correct place, I have a topic called "A question about Pentox and side effects" under the oral treatments section and you can post there or perhaps create your own thread if need be. Anyway, I'm very curious about your experience with Pentox. Thanks!

Joe Barely Cares

Quote from: Nemo on February 20, 2015, 03:05:54 PM
Im curious though, why do you attribute new Peyronies Disease activity to the Xiaflex shots - is it coincidental timing, location, or both?  

Well after the period where the pain should have subsided mine did not and a new curve plus more plaque showed up in areas that were previously either unaffected or had stabilized. Dr. Lue likes to tell me that with Peyronie's it's like a train going the wrong way down the track. The most important part is stopping the momentum backwards (plaque formation).

I was informed and had seen in the literature that the shots could cause a recurrence. Again, I guess I just got "lucky" in this particular instance. The shots were in the area that had been affected before obviously, and you are definitely causing injury, though they are potentially therapeutic shots, it is still injury. In my case the shots, and who knows maybe the stretching as well, caused the Peyronie's to recur. Hope that makes sense.  

Joe Barely Cares

 
Quote

Joe-

Can you please go into detail on the issues Pentox caused. If here isn't the correct place, I have a topic called "A question about Pentox and side effects" under the oral treatments section and you can post there or perhaps create your own thread if need be. Anyway, I'm very curious about your experience with Pentox. Thanks!

When I was on the double does 800mg x3 vs 400 mg x 3 I had issues with postural orhtostatic hypotension. What this means in short is if I went from seated to standing or lying to standing I would often feel very lightheaded to the point of passing out. The low point of that period being that I had to be taken by stretcher out of a pro sporting event I was attending as it hit really hard and I could barely sit up let alone drive myself home. Another wonderful adventure produced by my good friend Peyronie. Dr. Lue had me stop the Pentox cold in that instance and the issue went away.  

hope4all

Joe. I'm so sorry to hear you were dealt a bad hand. I totally get how you feel, and you may be right about time helping deal with this latest setback. I had to disconnect for a time myself after failed Verapamil shots that left me with more plaque than I started with.

You should not be out $7,000 unless you have a High Deductible Health Plan. I've worked for health insurance companies for over 20 years and have some ideas on how to fight a denial.  Feel free to PM me or look at my other posts by searching my name.  There is also the co-pay assist program from Auxilium, if you are totally screwed by your insurance company. That at least covers up to $1,000 I think.  Usually, the distributor will not ship the medication until they have a guarantee of payment from the insurance company or the specialty pharmacy benefit manager.

You need to keep fighting your insurance company, that's a boat load of money.  Let me know if I can be of help in some way.
Take care.