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Author Topic: Inital Xiaflex Results  (Read 358 times)

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betterbend

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Inital Xiaflex Results
« on: February 08, 2018, 11:32:14 AM »

So I had my first two Xiaflex injections in January and started traction two weeks ago 2-3 hours per day.  Also take 400mg of CoQ10 that has 30 units of vitamin e in it.  This is anecdotal as I have not done measurements yet, but results thus far:

Background:

Initially 30 degree curve upward and some bending to the left, with some hour-glassing mid shaft.  Visual symptoms and plaque discovered in May 2017, discomfort and softness issues were happening prior for several months, but basically I ignored them figuring it was what happens when you reach mid 50's and was using sildenafil on as needed basis (not every time).  Things seemed pretty stable after discovery and my initial diagnosis via urologist was Peyronies.  He told rub vitamin E on it and that injections don't work, and make it worse.  Saw two Peyronies guys and choose Mulhall at MSKCC in July.   He said with my condiditon I had a choice of verapamil or Xiaflex.  Was going to go verapamil, but my competitive juices got flowing after the insurance company denied Xiaflex, so I made it my mission to get it approved.  Which I did in December.

Injections were not bad at all, a little pain for 10 seconds but that was it.  I was wrapped for 20 hours or so, and removing the wrap was more painful then the injection, but still pretty mild.  No bruising.  I saw no change initially, and was hoping that right after injection things would have improved, however after my first two weeks of traction, and modeling of my morning erection only per the Xiaflex protocol, I believe the curve to the left is not there any more.  My upward curve is still there, but it did seem a slight bit less.  I also feel better about my hardness, but still not fully hard.  I did not use sildenafil, as I felt I didn't need it.  The hour-glassing is still there and may be a bit more pronounced, but that may be because its straighter now (no bend to the left).  Overall appearance of penis looks better to me.  My wife said it felt fine during sex, but that really wasnt an issue prior.   She still had to guide it in.

Mentally I feel more positive about things, but still see that there is more improvement needed.  I am hoping that the improvements I am noticing are real, and that results will continue.  Hope this is helpful for the guys considering treatment out there ...
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chas

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Re: Inital Xiaflex Results
« Reply #1 on: February 14, 2018, 05:31:00 AM »

Hi Betterbend.
I can only say I wish you well and am following your story keenly as I am waiting on a written quote/estimate before I go down that road.
Best of luck from an Australian patient.
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betterbend

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Re: Inital Xiaflex Results
« Reply #2 on: February 14, 2018, 03:27:11 PM »

Thank you man and Happy Valentines Day ... so far I am moderately optimistic.  I figure I am only 15% in to my treatment regimen so my expectations are gauged to that, my hope is things will progress on an upward curve, so to speak.  I plan to keep updating after each treatment ... good luck with the cost issues stuff isn't cheap.  The company has a coupon on the website for $1200 per injection assistance, dont know if that will work down under, if it does any you can get some coverage via insurance, then maybe it becomes affordable ... 
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Gutted

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Re: Inital Xiaflex Results
« Reply #3 on: February 15, 2018, 07:13:40 PM »

The company has a coupon on the website for $1200 per injection assistance, dont know if that will work down under, if it does any you can get some coverage via insurance, then maybe it becomes affordable ...

Do you mean insurance contribution, or the Xiaflex manufacturer offering something to any potential patient ??

Cheers
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WhatNext81

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Re: Inital Xiaflex Results
« Reply #4 on: February 15, 2018, 07:38:39 PM »

Gutted, if your insurance doesn't cover it you can call the manufacturer. They can assist you in saving money if insurance doesn't cover it. They might even have a few options if I recall correctly. As long as the curvature is 30 degrees or more. There might even be a program outside of the manufacturers discount that can be used in conjunction. Since the drug is also used for hand injections just be clear it's for peyronies and keep pushing in a polite manner to see if they can check all options. I started the process before I got things sorted out with insurance. This drug is so expensive due to the fact that it's FDA approved. One reason being that when they slap that approval label on it, they need $$$$$ in the event of class action lawsuits. If you can't find contact info let me know and I can search. There should probably be a sticky for this!
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WhatNext81

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Tsanchez12369

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Re: Inital Xiaflex Results
« Reply #6 on: February 15, 2018, 08:04:07 PM »

The restrictions indicated only available in the US.  But look for patient payment assistance for Xiapex by SOBI manufacturer.
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betterbend

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Re: Inital Xiaflex Results
« Reply #7 on: February 15, 2018, 09:15:12 PM »

Do you mean insurance contribution, or the Xiaflex manufacturer offering something to any potential patient ??

Cheers

The Xiaflex coupon, as Tsanchez pointed out is for the US, will pay any out of pocket cost up to 1200 usd.  So if you have a 500 copay after insurance, the will pay that back to you via the coupon.  If you have no insurance they will pay you back the max of 1200.  If the cost is 4000 from the doctor you, unfortunately, will pay end up with an out of pocket cost of 2800.  Hopefully the European version has the coupon also... Hope that explains it better.
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WhatNext81

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Re: Inital Xiaflex Results
« Reply #8 on: February 16, 2018, 07:45:11 AM »

Call. 95% of patients end up with $0 out of pocket. Works through the manufacturer and also talk to your urologist for assistance. Smaller practices less likely to help. Find a good practice, large hospital that treats a lot of peyronies patients. Pharmaceutical reps like high volume practices. There's a huge disconnect between drs, pharmaceutical companies and insurance. It can be time consuming.
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