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Author Topic: xiaflex injections  (Read 8809 times)

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batboy

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xiaflex injections
« on: April 10, 2014, 12:44:19 PM »

Hi All, I had my first two in injections five weeks ago and scheduled to get the next two shots in ten days. I went from having 45 degree bend down to about 30 degree bend. Also  I had a dent in the side of my penis which is gone. The first shot left my penis looking like someone whacked it with a hammer. Discoloration, swelling and bruising but three days later it looked much better. I did not have near the bruising and swelling after the second shot. I am still taking pentox, Cialis, and arginine and optimistic that the shots will reduce the curvature more. I am paying for the shots myself as my insurance does not cover them.. Also, after the second shot I woke up with an erection and there was no bend but it came back in a week or so. My doctor said that this is normal
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james1947

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Re: xiaflex injections
« Reply #1 on: April 10, 2014, 05:06:50 PM »

batboy

Thanks for the update and keep updating us.
It sound significant improvements after the first two injections.
Wish you to continue to improve.
Can you tell us how much you are paying for the treatment?

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.
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Knight

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Re: xiaflex injections
« Reply #2 on: April 10, 2014, 09:24:26 PM »

This sounds promising! Best of luck in your continued recovery!
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batboy

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Re: xiaflex injections
« Reply #3 on: April 11, 2014, 02:45:59 PM »

James, The medicine and the doctors fee totaled 8000 dollars for each session, which includes the two shots and then a third visit for the modelling.. I am supposed to get 1000 back from Auxillium in the form of a rebate, for each two shot session. The doctors filed the claim with  United Health Care, my insurance provider, and as of now I do not get anything from them.. Maybe in the future.. It is very pricey for the medicine but I vowed when the peyronies came on in December this year, to throw everything at the disease as early as I could.. Good idea, bad idea??? We will see
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james1947

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Re: xiaflex injections
« Reply #4 on: April 11, 2014, 04:38:54 PM »

batboy

For sure is not a bad idea if you have the financial resources for the injections.
Many of us had tried whatever is in their capability and understanding to fight this disease.
Wish you a very successful outcome.

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

mylesd

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Re: xiaflex injections
« Reply #5 on: April 15, 2014, 10:44:07 PM »

I also wish for a successful outcome for you batboy. Good luck.
I'm hoping BCBS will soon start to cover this as my uro has great interest to use it if coverage is available.
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IhatePD

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Re: xiaflex injections
« Reply #6 on: April 16, 2014, 05:45:29 PM »

Everyone, 

I had my follow up with my urologist today and I want to give you some feedback. His name is Dr. Michael Metro in East Norristown PA and he was part of the Xiaflex trials.  He had six patients in the trials and two had significant improvement and the other four did not since they we already calcified. He does not know the extent of their improvement since they traveled from as far as Texas to be treated by him and have not returned for follow ups.  The significant improvement was their description, not his.  Interestingly, all six patients are doctors but I do not know their specialty. I hope that is a good sign.

Since Xiaflex was approved, he has injected two patients starting last week. He said that the cost for each injection was $3,000 and he is having patients get preapproved by their insurance to see how much of the cost they will absorb. I filled out the forms and they will submit it and I will decide if I want to proceed later on.

He explained that he is teaching other doctors how to administer the Xiafelx and is holding a workshop tomorrow for them. I asked about injecting Xiaflex into my penis with a dorsal (upward) curve. I am concerned about hitting the nerves. He explained that he injects a dorsal curve from the sides of the penis to help avoid the nerves. The treatment calls for two injections, two days apart. He explained that he no longer does the "modeling" after the second injection. Instead, he wants the patient to use a traction device for 2 hours per day for six weeks following the second injection. I asked about the amount of traction to apply and explained that you should feel a"slight tug" in the amount of pressure.

I asked him about PRP injections and he knows about them in the context of treating other injuries. He felt that it could be helpful in the inflammation stage but did not know if it would help with Peyronies Disease curvature. I appreciate his honesty.

I have not decided if I will go with the Xiaflex injections. I might try the PRP first.

James, I am hoping to hear good news from you with your PRP injections.
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Knight

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Re: xiaflex injections
« Reply #7 on: April 16, 2014, 05:51:46 PM »

IhatePD - Great post! Thanks for the info!
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james1947

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Re: xiaflex injections
« Reply #8 on: April 16, 2014, 07:31:11 PM »

IhatePD

Thanks for the detailed information.
I will post in a few minutes on the PRP topic how is going my PRP, not much to say

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

RoyHobbs

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Re: xiaflex injections
« Reply #9 on: April 16, 2014, 11:03:06 PM »

I've been waiting two months for insurance approval and have been told by Dr. Gelbard's office that it will likely take another month. Apparently there is one Auxilium rep for Southern California and hundreds of patients awaiting approval.
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tdp1976

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Re: xiaflex injections
« Reply #10 on: April 18, 2014, 12:00:46 PM »

Hi guys,
I'm frustrated beyond belief, my insurance company has approved coverage for the Xiaflex injections but now my Urologist says he's having a problem with the pharmaceutical company and that it's on hold for now. I mean come on. I've been waiting three years, here is the opportunity. My insurance company has given me a time frame. I don't understand. Anyone else in a similar situation?
Tim
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BrooksBro

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Re: xiaflex injections
« Reply #11 on: April 18, 2014, 12:13:14 PM »

I have been told that, in the US, Auxilium makes Xiaflex available through several regional compounding pharmacies.  Mine came from US Bioservices - US Bioservices | Leading provider of specialty pharmaceutical products & services.  Based on the list of potential patients they received from my doctor, they sent me a pre-approval document in February, which they submitted to BCBS TX.  BCBS TX recently sent me a letter saying that pre-approval was not necessary, because injections for Peyronies are a covered procedure (at 80%).

See my posts here: 
Thread for Guys in Xiaflex Trial - Currently or Previously - Peyronies Society Forums
$28,000.00 for Xiaflex injections... - Peyronies Society Forums

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bummedout

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Re: xiaflex injections
« Reply #12 on: April 18, 2014, 08:15:20 PM »

I also go to Dr. Metro.  He seems like one of the more knowledgeable and honest guys out there.  Unfortunately, as of right now my insurance won't cover Xiaflex.....honestly kinda' scared of it though anyway.
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michaelb

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Re: xiaflex injections
« Reply #13 on: April 19, 2014, 01:25:48 PM »

When I knew I was trying to get insurance to approve Xiaflex, I signed up for 3 different insurance plans.  Yes I was paying $1200 a month for insurance, but I'm lucky I did this. I submitted all 3 at once for coverage.  2 declined it, 1 approved it.  I simply cancelled the other 2 plans and now I have 100% coverage.  I advise others do the same to avoid any further delay.

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james1947

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Re: xiaflex injections
« Reply #14 on: April 19, 2014, 03:59:15 PM »

michaelb

Good advice :) :) :)

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

michaelb

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Re: xiaflex injections
« Reply #15 on: April 20, 2014, 01:49:27 PM »

Thanks.  While on the topic, everyone that is in the process or about to submit for coverage, it should NOT take long at all for approval.  If it is taking long and Auxillium Advantage is giving you the run around or telling you they are having some "pushback" from the lab or any other sort of BS, it means it is likely not going to be covered.  I went through this with 2 different carriers.  When my last carrier was officially submitted as my last resort, it took 1 week only.  The other 2 carriers were telling me "oh yeah we'll get this approved just a little pushback, give it a couple more weeks" blah blah blah, and never approved. 

I'm sure I don't know 95% of what's actually going on when they are attempting to approve it, but just letting you know what I experienced since the insurance part was not easy for me. 
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michaelb

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Re: xiaflex injections
« Reply #16 on: April 20, 2014, 07:29:58 PM »

Quote modified by moderator. Please read the forum rules regarding quote.
This is exactly what I'm referring to btw. Same thing happened to me and both times it ended up not being approved.
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mylesd

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Re: xiaflex injections
« Reply #17 on: April 21, 2014, 01:12:41 AM »

Does anyone know if BlueCross Blue Shield covers this yet. I've read that Ins may wait six mnths or so after a drug has been approved before they start to cover. Since FDA approved Xiaflex in Dec for Peyronies Disease, I'm wondering if it will be more widely covered soon.
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BrooksBro

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Re: xiaflex injections
« Reply #18 on: April 21, 2014, 12:06:47 PM »

I just got a letter from BCBS TX last week, saying that pre-approval for Xiaflex injections was not required, because "injections for Peyronie's" is a covered procedure.
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mylesd

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Re: xiaflex injections
« Reply #19 on: April 23, 2014, 07:33:00 PM »

Thnx BrooksBro
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batboy

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Re: xiaflex injections
« Reply #20 on: May 18, 2014, 12:09:42 PM »

Hi All, I had the first injection Friday and will get the second Monday. This is round two for the shots. The first round was about 10 weeks ago. The bruising and discomfort were far less this time than after the first round of shots. Today is sunday and I woke up with an erection with about a 20 degree bend. Thursday it was 40. If the bend would stay at 20 degrees, I would be extremely happy. I asked Dr Gelbard if I should continue taking Pentox. He kinda shrugged and said finish off what you have. He is confident the xiaflex will reduce the bend to acceptable levels. I am also looking into PRP shots as a second or third line of defense. I am more optimistic  now than ever before  that things will straighten out..
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james1947

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Re: xiaflex injections
« Reply #21 on: May 18, 2014, 05:23:50 PM »

batboy and others

Please continue to update us regarding the results.
Sounds as a real solution for Peyronies.

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.
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chandnitare

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Re: xiaflex injections
« Reply #22 on: May 18, 2014, 08:11:11 PM »

Hi,

I have one plaque is calcified slightly and other is not, can be a candidate for xiafelx?

If no why ? They can give injection to other plaque, right?

Bes regards,

chand
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james1947

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Re: xiaflex injections
« Reply #23 on: May 19, 2014, 08:39:23 AM »

Calcified plaques were not allowed in the trial, I suppose the results will be less good.
Maybe now when Xiaflex is approved they may try.

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

RoyHobbs

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james1947

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Re: xiaflex injections
« Reply #25 on: May 19, 2014, 06:19:25 PM »

The new thing in the article is:
Quote
XIAFLEX preferentially degraded type I and type III collagen, predominant collagen types in Peyronies Disease plaques, while sparing type IV collagen present within connective tissues that surround arteries, large veins and nerves.
And the new "smart syringe".
Except those two points, it sounds more like a promotional/advertisement of Xiaflex by Auxilium.
My opinion in any case

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

batboy

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Re: xiaflex injections
« Reply #26 on: May 21, 2014, 10:31:08 PM »

Hi All, Follow up after my last xiaflex injection on Monday. Today is Wednesday and the bend has gone down from about 40 degrees after my first injection. Today th bend is still around 20 degrees. There is no more pain, swelling or bruising from the shots. There is a little discoloration on the top where the plaque is due to more vigorous modelling. If the bend stays the same. I will consider the shots a success..
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Chef Chris

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Re: xiaflex injections
« Reply #27 on: May 22, 2014, 12:09:00 AM »

Gratulations batboy i hope you're progress is permanent.
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james1947

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Re: xiaflex injections
« Reply #28 on: May 22, 2014, 12:51:42 AM »

Congratulation batboy

Wish you more improvement after the next shots and modeling.
With all our discussions and "if's" seems that Xiaflex is working. :) :D ;D

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

batboy

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Re: xiaflex injections
« Reply #29 on: May 22, 2014, 09:40:57 AM »

Thanks James and Chef, If the bend stays the same, I will probably get no more shots. One thing that concerns me is the modelling itself. It seems I am putting the same strains on my pecker with the bending and stretching that caused the problems to begin with. I asked Dr. Gelbard this and he stated the modelling is very important in the straightening process.
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RoyHobbs

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Re: xiaflex injections
« Reply #30 on: May 22, 2014, 01:52:05 PM »

Hey Batboy-

I'm also a patient of Dr. Gelbard's but still in pending insurance approval limbo. I see your first and second round of injections were about 10 weeks apart. Is that because of the protocol Gelbard follows or more to do with your scheduling? And has he suggested using VED for the stretching exercises? He brought that up at my consult.

Thanks for the updates and keep them coming!
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batboy

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Re: xiaflex injections
« Reply #31 on: May 22, 2014, 03:58:21 PM »

Roy, It was a scheduling situation that I got the shots 10 weeks instead of six apart. But Dr Gelbard was not the least concerned about the time between. Also, I have to leave for three months and he said no problem getting more shots if I want when I get back. I did not talk about VED thi s time. He was more concerned with the modelling routine. Note to add. I woke up with a powerful erection today and the bend is still around 20 percent. I haven't measured for length gain but I lost about a half inch until now. Next time I will measure..  Again I am happy with Xiaflex
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LWillisjr

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Re: xiaflex injections
« Reply #32 on: May 24, 2014, 08:44:36 AM »

Today is Wednesday and the bend has gone down from about 40 degrees after my first injection. Today th bend is still around 20 degrees. ......

I will consider the shots a success..

Batboy,
I know with Varapamil injections, they want to do a minimum of 6 and then re-evaluate to see if there is any improvement at all. And if there is proceed with another series of 6 injections. It is unusual to get results after 1 or 2 injections. I understand you are getting Xiaflex injections but what you are posting is significant results in such a short period of time.
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batboy

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Re: xiaflex injections
« Reply #33 on: May 24, 2014, 10:02:02 PM »

LWillis, I have had four shot total. My bend has gone from 45to 50 degrees with a sharp bend upward with dents on each side of the shaft. Now the bend is in the low twenties with no hour glassing, no dents and more of a banana shape. Can I attribute this all to Xiaflex? Can,t say.. My Peyronies, bend or whatever, came on immediately in December 2013.. And within a month or so I was on the pills and treatment, Pentox, VED, arginine etc.. Maybe a combination of all the above led to my improvement.. My plan all along was to throw everything I could, as early as I could  at the disease .. This is  working for me.. YRMV
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LWillisjr

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Re: xiaflex injections
« Reply #34 on: May 25, 2014, 08:38:10 AM »

I agree it was likely due to your early recognition and treatment, and a combination of all the above. Glad you got early resolution to your Peyronies.
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