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Author Topic: Xiaflex for hour-glassing, etc.?  (Read 1946 times)

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Nemo

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Xiaflex for hour-glassing, etc.?
« on: May 28, 2015, 10:52:42 AM »

Correct me if I'm wrong, but to get an insurance company to pay for Xiaflex, you have to have a "stable" bend of 30-degrees or more, is that right? 

Has anyone heard talk about anyone using Xiaflex for something like septal plaques that cause only hour-glassing, or dents, or depressions? 

I don't know if I'm just a weird case or what, but my "flare up" has been active for about a year and a half, with softish plaques causing only dents, depressions, etc., no shortening or bending.  My understanding would be that getting Xiaflex approved in a such a case is a lost cause. Would you concur? 

Thanks,
Nemo
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hope4all

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Re: Xiaflex for hour-glassing, etc.?
« Reply #1 on: May 28, 2015, 11:48:38 PM »

Mine was approved by the doctor seeing pics of erect penis only and him coming up with a ballpark figure for the curve, without the ultrasound. Eventually, I got the ultrasound but the medication had already been shipped and paid for by my insurance company.

I think it depends on how strict your insurance company is. I don't think they are asking for ultrasound results prior to approval. I think they are just looking for the over 30 degree bend making it difficult and painful for sex.

If you have significant hour glassing that causes buckling making sex difficult and painful I would say your bend is 90 degrees because when you try to insert it buckles back on itself. I think if you found the right doctor to commiserate he/she would go to bat for you.

After 3 rounds my hour glassing has diminished substantially and my girth around the band has returned to almost normal. I no longer have the buckling problems I had before Xiaflex and my erections seem more confident and firm. I'm at about 30 degrees now, maybe a little less.  Hard to tell, and I haven't measured lately.

If it were me I would not mention that I am in an active stage. I would say I have no pain except during sex and sometimes afterwards because of the buckling. The Xiaflex helps soften the plaque and may even prevent the active plaque from getting worse before it has a chance to settle in. That's just my unscientific feeling.

By the way, thanks Nemo for all of your posts, and good luck to you.
hope4all
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Nemo

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Re: Xiaflex for hour-glassing, etc.?
« Reply #2 on: May 28, 2015, 11:57:57 PM »

Glad you're seeing improvement - that's tremendous! 

I have no bending whatsoever, no buckling either - I just hate waiting to see what the end result of these indentations and depressions will be, when there's a chance that if Xiaflex were injected into the plaques now, it could nip the problem in the bud so to speak.  I'm not sure any good doc would look at my condition and be willing to pull the trigger on Xiaflex at this stage though. And frankly, if I knew I would not ever et any worse than I am right now, I'm not sure I'd pull the trigger myself. It's the not knowing that's the kicker.

I've literally been in an active stage for coming up on two years ... I didn't even think that was possible. Of course, with Peyronies Disease, anything's possible.

Nemo
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hope4all

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Re: Xiaflex for hour-glassing, etc.?
« Reply #3 on: May 31, 2015, 12:59:13 AM »

Hey Nemo. I'm so sorry you've been in pain for this long, that's awful. The underlying causes of this disease are insidious to say the least. Just throwing stuff out there but have you tried decreasing inflammatory foods and drinks? Do you sit most of the day? If so, try getting a standing desk, that might alleviate the pain somewhat. My standing desk has alleviated my crotch discomfort.

Sending you positive healing energy your way. Just letting you know I understand the pain you are going through, but sucks you've had it so long.
hope4all
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Nemo

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Re: Xiaflex for hour-glassing, etc.?
« Reply #4 on: May 31, 2015, 02:06:03 AM »

Thanks a lot. I'm not actually in pain though, thank goodness. When I say I'm in an "active" state, I just mean that plaques are present, and the indentations they're causing are very slowly getting more pronounced, but thankfully, there's no "pain" to speak of.

I do sit all day, and your advice is well taken.

Nemo
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hope4all

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Re: Xiaflex for hour-glassing, etc.?
« Reply #5 on: June 02, 2015, 12:50:45 AM »

Ohhh, well that's good to hear Nemo. Regardless, I still think you would benefit from Xiaflex in this state. But again, that's just my gut.
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Nemo

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Re: Xiaflex for hour-glassing, etc.?
« Reply #6 on: June 02, 2015, 10:17:36 AM »

I'm going to see a urologist later this month and will put the question to him about Xiaflex. I suspect he'll say "you're not a candidate at this stage" but I'll never know until I ask. 

Thanks,
Nemo
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james1947

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Re: Xiaflex for hour-glassing, etc.?
« Reply #7 on: June 02, 2015, 05:55:15 PM »

Can't a friendly urologist just write that your bend is 35 degree?

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