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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: $28,000.00 for Xiaflex injections...  (Read 16391 times)

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charlie44

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$28,000.00 for Xiaflex injections...
« on: February 27, 2014, 11:20:12 PM »

Told by Uros office that is the charge. $24k for the medicine, $4k for the procedure....can you believe that cost!!! They are working on all patients behalfs with the insurance companies to try and get coverage. Even if my insurance covers some, it would still probably cost me about $10k out of pocket. Since it is the only FDA approved drug, the drug maker is going to screw everybody.
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Knight

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Re: $28,000.00 for Xiaflex injections...
« Reply #1 on: February 28, 2014, 08:52:12 AM »

That's insane. Human greed has reached it pinnacle. Disgusting.
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pointedly

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Re: $28,000.00 for Xiaflex injections...
« Reply #2 on: February 28, 2014, 10:29:14 AM »

Greed?  Yes.  But unfortunately the companies also have to factor in the cost of insurance to cover lawsuits, cost of lawyers, etc..,.  While I would like all medications to be affordable to those with needs, I don't have blinders on when I see commercials from large law firms BEGGING people to call them if they have ever been prescribed Drug A thru Z.  While many of us have tried Verapimil injections, how many attorneys would start class action suits if it was discovered 5 years from now that those who have had those injections have a higher rate of a certain type of cancer, or that if they had V injections that the pharma company should have known that it would interact unfavorably with Drug A thru Z?

Pharma companies try to cover their behinds by disclosing all side effects and possible side effects (listen to the background voice on the next drug commercial on TV) that make it seem like you will most certainly die if you take their medications.

I'm not sure how many years that Auxilium has been trying to get FDA approval, but the costs involved in trials, development, etc.., have not been insignificant either.
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IhatePD

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Re: $28,000.00 for Xiaflex injections...
« Reply #3 on: February 28, 2014, 12:05:35 PM »

Unfortunately, with every drug there is going to be many people that will have an adverse and possibly deadly reaction to it. All of us here on this site will respond differently to the various treatments and medicines/supplements we are taking.

The cost of the drug has to cover the lawsuits that will follow its release. I personally know an oral surgeon that gave a patient intravenous Valium in order to extract a tooth. The patient's heart stopped immediately. He revived her, it stopped again and he revived her a second time. In the ambulance in route to the hospital, her heart stopped a third and final time. Her husband, unable to deal with this, committed suicide the following day. They left behind several children.

Valium is considered a rather mild sedative. The oral surgeon did absolutely everything he should have before administering the Valium. She filled out an extensive questionnaire and he asked her many questions. No matter where she went for that surgery, as soon as the Valium was injected her heart was going to stop. The lawsuit that followed almost bankrupted the liability insurance company.

There are no guarantees with any medicine. I myself have suddenly developed an allergy to Penicillin and its derivatives. No one knows why.
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RoyHobbs

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Re: $28,000.00 for Xiaflex injections...
« Reply #4 on: February 28, 2014, 12:07:06 PM »

Charlie44-

Did your doctor get you started on the Auxillium advantage program? Aside from insurance, Auxillium is willing to reimburse patients up to a 1000/shot. Dr. Gelbard in Burbank signed me up and I am just awaiting word on whether I've been accepted. You should inquire.
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charlie44

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Re: $28,000.00 for Xiaflex injections...
« Reply #5 on: March 01, 2014, 03:52:16 PM »

Roy, I will inquire. They doctors office is pursuing the insurance options on my behalf.
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BrooksBro

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Re: $28,000.00 for Xiaflex injections...
« Reply #6 on: March 13, 2014, 04:09:26 PM »

I don't know the total cost, yet.

In mid-February, my urologist (Larry Lipshultz, Baylor, Houston) sent a letter with the pre-approval form.  I filled it out and returned it to his office two weeks ago (end of Feb).  I was called today (March 13) by the specialty pharmacy (U.S. Bioservices) saying that it is covered by my insurance (BCBS TX PPO).  My copay was $100 for the medicine.  I was also approved for the copay to be covered by Auxilium.  My out-of-pocket cost for the medicine is $0.00 (USD).  The pharmacy needed some very basic information from me; height, weight, how long diagnosed, and have there been any emergency or hospitalizations in the last year.

The medicine will be shipped to my physicians' office.  When it arrives, the office will call me to schedule an appointment.

I sure hope this is more effective than were the 12 verapamil injections.
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pintor

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Re: $28,000.00 for Xiaflex injections...
« Reply #7 on: March 15, 2014, 05:25:33 AM »

You and I are on the same path.  My insurance also paid for the drug and my copay of $75 was covered by Auxilium.  I expect to receive the treatment within next to weeks.  Training of their staff is pending.  There sure are a lot of hoops to jump through.  Good luck with you treatment.  I will post my results.
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pintor

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Re: $28,000.00 for Xiaflex injections...
« Reply #8 on: March 18, 2014, 11:16:04 PM »

My docs nurse called today setting up my first xiaflex injection for tuesday, mar 25.  I have waited a long time for this. 
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james1947

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Re: $28,000.00 for Xiaflex injections...
« Reply #9 on: March 19, 2014, 01:19:04 AM »

pintor

Wish you good results from the Xiaflex injections.
Let us know the results

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

Knight

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Re: $28,000.00 for Xiaflex injections...
« Reply #10 on: March 21, 2014, 10:00:23 PM »

Good luck Pintor! Please keep us updated on your progress!
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pintor

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Re: $28,000.00 for Xiaflex injections...
« Reply #11 on: March 31, 2014, 08:03:35 PM »

So far 2 injections, no adverse effects but no notable improvement either.  Too early.  I have a point to bring up.  I trust my doctor, but how can I be sure he actually injected the drug?  Since each vial is worth thousands, for future injections I will request to see the unopened vial and watch them open it.  Does this sound out of line to anyone?
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james1947

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Re: $28,000.00 for Xiaflex injections...
« Reply #12 on: March 31, 2014, 09:21:21 PM »

pintor

Hope they will not be upset from your request, but you have the right to check what you are injected.
Inform us how is going on.

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

MikeSmith0

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Re: $28,000.00 for Xiaflex injections...
« Reply #13 on: April 06, 2014, 12:14:16 PM »

So far 2 injections, no adverse effects but no notable improvement either.  Too early.  I have a point to bring up.  I trust my doctor, but how can I be sure he actually injected the drug?  Since each vial is worth thousands, for future injections I will request to see the unopened vial and watch them open it.  Does this sound out of line to anyone?

It's not that easy for them to accommodate your request.  It comes in a powder which has to be carefully mixed with a very precise amount of solution in another vial...I wouldn't want to throw off the doctor or his assistant by watching them do this.  We're talking about fractions of a milliliter here. It's not like it just comes out of a box.  You can ask... but it may make things more complicated.

You had NO side effects? No swelling or anything?   That's weird.  84% of the population has side effects, and that is in the prescribing information.  You could approach the issue from this perspective.  Show them page 16:

https://www.xiaflex.com/_assets/pdf/XIAFLEX-PI-and-MedGuide-Combined-20131206-ver-e.pdf
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BrooksBro

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Re: $28,000.00 for Xiaflex injections...
« Reply #14 on: April 07, 2014, 04:50:11 PM »

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james1947

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Re: $28,000.00 for Xiaflex injections...
« Reply #15 on: April 07, 2014, 05:24:38 PM »

BrooksBro

Thanks for the detailed update an keep us informed.
Regarding the payment, you have stated that:
Quote
My insurance (BCBS PPO) covered the procedure at 80%.  My co-pay for today was $85.
From simple mathematics, the treatment cost was $425?
This amount (if my calculation or understanding is not wrong) is very far from $ 28,000

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

BrooksBro

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Re: $28,000.00 for Xiaflex injections...
« Reply #16 on: April 10, 2014, 09:19:47 AM »

I won't know the full cost details for at least a month.  The doc cann't bill the insurance company until after I begin the treatments (now started) and then I see the claims processed about a month later.  I will update as I get information.  I had another $85 USD co-pay for the second office visit and injection.
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IhatePD

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Re: $28,000.00 for Xiaflex injections...
« Reply #17 on: April 29, 2014, 02:45:57 PM »

Sorry if this posts twice, I was finishing my post and hit something on my keyboard that made my post disappear.

I saw my uro two weeks ago and he had me fill out insurance forms to get pre-approval for Xiafelx to see what my cost would be. He told me that the cost is $3,000 per injection, two injections total $6,000.  His name is Dr. Metro in Norristown PA.

I just heard from US Bioservices, a "specialty pharmacy" and they told me that my insurance company, Aetna will cover everything except the $35 copay. He said he can probably get the copay covered I think through the maker of Xiaflex.

I am putting the Xiaflex shots on hold right now. I think (but I am NOT positive) that I will try the PRP injection first with Dr. Varano. I only have one penis and I want to make sure I am certain before I proceed.

I am going to discuss this with my girlfriend although I know she is very fond of my upward curve as it "hits places no one has ever before".

Still, I miss my old penis.
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james1947

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Re: $28,000.00 for Xiaflex injections...
« Reply #18 on: April 29, 2014, 04:58:03 PM »

IhatePD

I am doing now the PRP shots but let's don't forget it is a new trial by individual forum members while Xiaflex is an FDA approved Peyronies 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.
Got amazing support on the forum

RoyHobbs

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Re: $28,000.00 for Xiaflex injections...
« Reply #19 on: April 29, 2014, 06:37:32 PM »

Unbelievable. I've been on hold for 10 weeks waiting for approval here in Southern California. But great news for the guys moving forward.

Ihatepd I am doing the opposite. I'll go through xiaflex treatment first before considering prp.
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IhatePD

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Re: $28,000.00 for Xiaflex injections...
« Reply #20 on: April 30, 2014, 12:35:56 PM »

RoyHobbs, I am also thinking of going that route as well. It logically makes sense to me as Xiaflex will break down the plaque and the PRP will promote healing.

I'm just a little nervous about the Xiaflex. The pictures I saw don't make it look like a walk in the park.
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RoyHobbs

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Re: $28,000.00 for Xiaflex injections...
« Reply #21 on: July 12, 2014, 04:31:31 PM »

Insurance update:

I'm a patient of Dr. Gelbard in Burbank, Ca. After 4 and a 1/2 months of waiting I have learned that because my insurance company (Blue Shield of California) doesn't have a contract with US Bio Services, the company handling the delivery of xiaflex to my doctor's office, I have to first purchase the vials through another company, Besse, that they do have a relationship with and then go through the process of reimbursement. I did consider changing insurance companies, but that would put me at the back of the line and I don't want to wait another 4 and 1/2 months. I made this decision after consulting my insurance company and learning that there would be some reimbursement. I have a platinum plan with Blue Shield so I'm hoping they end up covering most of the cost with Auxilium covering some as well through their advantage co-pay plan. Yes, I'm rolling the dice here.

The total cost of one round (two vials) was $7062, charged to my credit card. The actual doctor's visit will be covered per usual under my insurance.

It's frustrating to have waited this long to learn this news. But I want to move forward with treatment and hopefully get better.
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james1947

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Re: $28,000.00 for Xiaflex injections...
« Reply #22 on: July 12, 2014, 05:31:02 PM »

Roy

Wish you successful treatment.
Update us how is going.

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

UrsusMinor

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Re: $28,000.00 for Xiaflex injections...
« Reply #23 on: July 13, 2014, 12:43:57 PM »

Roy--That's my insurance company, too--but only since the big changover in December forced me to acquire new insurance. (I have to carry pediatric dental, even though I have no children, and maternity coverage, even though I have no womb. My monthly insurance costs went from $271 to $589.)

Even if it weren't a problem of delay, I'd advise you to avoid changing insurers at this time, because it's almost impossible to do--the wait to get someone to answer the phone these days is several hours. Also, one of the reasons I changed to Blue Shield is because it is virtually the only insurer still operating in California that still operates a PPO, where you can choose your physicians without it all being managed through an HMO.

A $7,000+ charge is pretty hefty. I hope you have one of those credit cards where you get frequent-flyer miles for every dollar. If so, by the time you're done with treatments, you'll not only have a restored penis, but also have enough miles to take it on a vacation!
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blackdiamond

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Re: $28,000.00 for Xiaflex injections...
« Reply #24 on: July 13, 2014, 01:32:19 PM »

Does anyone know if Xiaflex is covered by Medicare ? my potential doc doesn't 
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Re: $28,000.00 for Xiaflex injections...
« Reply #25 on: July 13, 2014, 03:27:14 PM »

I'm sticking with Blue Shield. And thankfully the credit card used does have airline points so at least there's that!

My advice to anyone waiting is to see what pharmaceutical delivery company your insurance accepts and which one your doctor uses. You'll save yourself a lot of waiting time!
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Bob2

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Re: $28,000.00 for Xiaflex injections...
« Reply #26 on: September 19, 2014, 09:55:56 AM »

Thread bump.  Has anyone had success with Tricare Prime for retires to pay for Xiaflex?  Tricare has approved the treatment but the pharmaceutical rep has not been able to establish any form of reimbursement for the drug.  So according to the Dr's billing office they do not know if I am liable for the full cost ($6k), the copay for a non formulary drug ($1.2k) or the standard $44 for a brand name (non generic).  It has been 6 months since I started working with the Dr's office to determine the outcome. (If the moderators have a better thread for this, feel free to move it there.). Thanks.
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RoyHobbs

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Re: $28,000.00 for Xiaflex injections...
« Reply #27 on: September 19, 2014, 02:17:54 PM »

Update on my insurance issues: After 5 weeks of back and forth between my insurance company and Dr. Gelbard's office I learned last week that they will cover over 90%. Hopefully with the co-pay from Auxilium I will be responsible for nothing. This comes as a huge relief because I paid for the drug up front. I didn't have to do that for subsequent cycles because my doctor is carrying over the payments. I'll get my actual reimbursement from the first cycle at the end of treatment.

By the way because I paid up front I got a discounted price - 7062 instead of 8045 which is what they usually bill insurance companies for.

2nd cycle started today. I'll give an update in the results thread.
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ThisWontWork

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Re: $28,000.00 for Xiaflex injections...
« Reply #28 on: September 20, 2014, 11:52:07 AM »

Told by Uros office that is the charge. $24k for the medicine, $4k for the procedure....can you believe that cost!!! They are working on all patients behalfs with the insurance companies to try and get coverage. Even if my insurance covers some, it would still probably cost me about $10k out of pocket. Since it is the only FDA approved drug, the drug maker is going to screw everybody.
$28.000 for nothing! You have been screwed! Xiaflex is FAKE - it does not work better than placebo.
How do I know? I participated in the Phase3 trial. Did nothing to my deviation of 70°
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Cantstopme

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Re: $28,000.00 for Xiaflex injections...
« Reply #29 on: September 20, 2014, 02:13:11 PM »

Also posted in "Thread for Guys in Xiaflex trials..."

The maker of Xiaflex, Auxilium Pharmaceuticals, has a program called "Auxilium Advantage". Ask your urologist about it. Its a copay assistance program that pays up $1000 (US), per Xiaflex vial, toward your out of pocket costs. They even sent me an official "Copay Assistance Card"! So far, with my insurance coverage and this benefit, I have paid zero out of pocket for the first two series of injections.
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RoyHobbs

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Re: $28,000.00 for Xiaflex injections...
« Reply #30 on: September 20, 2014, 04:21:28 PM »

ThisWontWork-

I'm sorry it didn't work for you but I've already seen a 24 degree reduction of my dorsal upward curve after one just one cycle. I went from 79 degrees to 55 degrees.
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LWillisjr

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Re: $28,000.00 for Xiaflex injections...
« Reply #31 on: September 21, 2014, 08:28:10 PM »


Xiaflex is FAKE - it does not work better than placebo.
How do I know? I participated in the Phase3 trial. Did nothing to my deviation of 70°

I am sorry it didn't work for you, but that doesn't mean it won't work for other men. We all know there isn't 'one cure fits all' solution for this.
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Developed peyronies 2007 - 70 degree dorsal
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pintor

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Re: $28,000.00 for Xiaflex injections...
« Reply #32 on: September 25, 2014, 08:37:25 AM »

My angle of deviation went from 38 degrees to 20 degrees.  Also my erectile disfunction has been mostly resolved.  I can now have spontaneous sex without viagra.  Xiaflex definitely worked for me.  I have gone through 4 cycles and would like to receive more, but am finding that my insurance will not cover beyond 4 cycles.  According to the Auxilium rep, FDA only approved the drug for 4 cycles.  Prior to yesterday I did not know this.  Anyway, Xiaflex works.  Sorry it doesn't work for everyone. 
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Mending the Bend

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Re: $28,000.00 for Xiaflex injections...
« Reply #33 on: September 27, 2014, 09:05:10 AM »

pintor -

Congratulations....that's a 47% improvement. Was that a lateral bend? Having started at about 38 degrees myself, I know that getting down to 20 degrees makes a huge difference.

Did or do you experience any hour glassing or indentations? And what about buckling, hingeing or instability during erections? If so, did you have any improvement from Xiaflex? This is specifically what I'm trying to address now, and I have only 2 cycles to go...4 bullets left, if you will.

Mending
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pintor

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Re: $28,000.00 for Xiaflex injections...
« Reply #34 on: September 30, 2014, 09:56:14 PM »

Mending the bend,  I definitely had pretty significant hour-glassing with a bend directly to the left, with no upward or downward bend.  Still have dent on left side about 2" from base of shaft.  I have no hinging, buckling, or instability of erection, although I did have stability problem prior to treatments.  I could not have sex without viagra since my plaque developed 5 years ago.  Now, I can have spontaneous sex without viagra.  I feel great and am very thankful for Xiaflex.  Best of luck to you. Let me know how it works out for you. 
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BrooksBro

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Re: $28,000.00 for Xiaflex injections...
« Reply #35 on: October 06, 2014, 12:49:28 PM »

FINALLY, the insurance company was billed and processed the injections I had in April (or was it May?). 

My cost was $100, which was covered by Auxilium.  For two injections (one pack), the insurance was billed $6,697.75 USD.  The doc giving the injections said the meds cost them about $3,000 for the two-injection pack.

I was fortunate that the first round of two injections reduced my curve to almost none.  I can still feel a plaque there, and I still have venous leakage (the plaque probably prevents the veins from compressing enough).  I do not plan to seek additional injections or treatments.  I can get a strong erection (with Viagra), maintain it with a VED and constricting band, and I am straight enough to penetrate.  I can live with the residual plaque and hourglass.
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Knight

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Re: $28,000.00 for Xiaflex injections...
« Reply #36 on: October 15, 2014, 09:18:00 PM »

Great news BrookBro! Congrats!
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dob32

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Re: $28,000.00 for Xiaflex injections...
« Reply #37 on: October 20, 2014, 07:20:50 AM »

Wow, i am seeing a Dr Love in Melbourne Australia, he is our lead penile implant surgeon. He said hold off from Xialaflex as there is a conference in November and the world lead guys are talking about it. As first round of testing is over. As at the moment it is used in a certain way and no case studies on how the best way to use it. So after this he may be able to use more effectively. Also that it may be able to help with hour glass etc.
He said its about 60%-70% to cure after 8 injections. But after conference could be greater. He also said they are 1200 a shot as its not authorized in Oz so he gets it shipped to him and has a letter of consent etc
He was awsome so proactive, laughed at me and said a few stitches could have it 90% good and prob only 5mm loss in length. But for the moment put me on traction etc
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james1947

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Re: $28,000.00 for Xiaflex injections...
« Reply #38 on: October 22, 2014, 08:15:12 PM »

dob32

Could you give some more information regarding Dr. Love?

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

yyy

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Re: $28,000.00 for Xiaflex injections...
« Reply #39 on: October 30, 2014, 09:52:57 PM »

I would do anything to get my hands on that stuff, but  atm it's impossible to get it in EU
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dob32

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Re: $28,000.00 for Xiaflex injections...
« Reply #40 on: November 10, 2014, 07:20:37 AM »

Dr Love is one of Australias lead guys in this field, you can google him and see he has a website etc that has a lot of info, he is very pro pretty much everything on this site. After looking at my condition he pretty much laughed and said with a few stitches will be pretty much 100% again. Does them daily, but back on topic he said that is worth a shot if i want to out lay the money. However our health system will cover surgery but not the injections as not a recognised drug
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