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Author Topic: Inital Xiaflex Results  (Read 1582 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 ...


**ROUND 2 UPDATE BELOW ON MARCH 7, 2018

Started Round 2 (third injection) this week.  NO bruising from Injection although a little pain the next day, but really nothing.  The wrapping however was very uncomfortable.  I swelled at the base, the area between my body and the mummy wrap (about 1 inch).  My penis dug into the mummy wrap and I couldn't take it by 5 am so I removed it.  I was swollen at the base and irritated where it was digging in.  It's still a bit swollen there.  Hope that is gone by tomorrow.  I am happy I don't have to traction now ...

Second injection this week March 13.  This one was painful during and after the injection.  It was a difficult injection as the doctor was right in the plaque.  Black and blue a day later.  Swollen around the base area again.  Not near the injection site, but my doctor saw pictures and said it was normal bruising.  I would liken it to a black eye ... tender, with the area discolored.  Treating with 1800 to 2400 mg of ibuprofen (anti-inflammatory dose range) and ice packs.  Glad to start traction next week again ... lol
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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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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

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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betterbend

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Re: Inital Xiaflex Results
« Reply #9 on: March 07, 2018, 07:50:29 PM »

**UPDATE ROUND 2

Started Round 2 (third injection) this week.  NO bruising from Injection although a little pain the next day, but really nothing.  THe wrapping however was very uncomfortable.  I swelled at the base, the area between my body and the mummy wrap (about 1 inch).  My penis dug into the mummy wrap and I couldn't take it by 5 am so I removed it.  I was swollen at the base and irritated where it was digging in.  It's still a bit swollen there.  HOpe that is gone by tomorrow.  I am happy I don't have to traction now ...

Second injection this week March 13.  This one was painful during and after the injection.  It was a difficult injection as the doctor was right in the plaque.  Black and blue a day later.  Swollen around the base area again.  Not near the injection site, but my doctor saw pictures and said it was normal bruising.  I would liken it to a black eye ... tender, with the area discolored.  Treating with 1800 to 2400 mg of ibuprofen (anti-inflammatory dose range) and ice packs.  Glad to start traction next week again ... lol
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betterbend

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Re: Inital Xiaflex Results
« Reply #10 on: March 14, 2018, 05:01:39 PM »

Update on Injection 4 above ...
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Hershel

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Re: Inital Xiaflex Results
« Reply #11 on: April 15, 2018, 08:07:33 PM »

Uh, didn’t they tell you not to use ice? It counteracts the xiaflex. I’m a little concerned about your UROs expertise.
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Crookid

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Re: Inital Xiaflex Results
« Reply #12 on: April 15, 2018, 08:22:06 PM »

Hershel quote "Uh, didn’t they tell you not to use ice? It counteracts the xiaflex. I’m a little concerned about your UROs expertise."

Betterbend, I just had my 2nd round of injections and had very similar swelling/discomfort as betterbend.

Hershel, I used an icepack on Mr. Midnight after a very similar round to what BB just described. I told the NP who administered my injections and she said it was a good thing to do. Is there some more info regarding icing and xiaflex you could point me to?
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betterbend

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Re: Inital Xiaflex Results
« Reply #13 on: May 17, 2018, 01:17:08 PM »

**UPDATE**

Went for a mid-cycle curvature assessment.  Thankfully, I was able to achieve a full erection with just a single injection this time.   Knowing what to expect helped a lot I was much more comfortable.  My results were as follows:

Reduction in left curve from 10% to 0%.  I was happy about that.  My upward curve increased from 30% to 38%.  Hour glassing still there

I think there were two reasons for the increase.  The first is that I was able to achieve a full erection for this evaluation easily.  The first time I was assessed it took three injections and I just had trouble getting a good erection, so it might have gotten under-measured.  The second reason is that with the left curve gone the upward curve might have just had more pull on it so it went up a little more. 

My doctor feels that I was not responding that well to the Xiaflex and said that if you don't respond on the first 4, most men don't respond to the second four either.  Its possible, but the likelihood  is much lower.  He said its really in my court now.
I can stay where I am now or if I am really bothered, and want to avoid surgery, he would let me proceed with the next four.  If that doesn't work and i am still bothered the next option is surgical. 

I think I am going to take the summer to think about it now and continue with traction.  I am not in too bad a place because I can still function, with some minor limitations.  I definitely feel larger and thicker from the traction, which is very helpful.  My wife says it doesn't bother her much, she has to make some adjustments, but its ok with her.  Surgery is out of the question unless things get worse. 

"To Xiaflex or not to Xiaflex, That is the question"   we will see in September ...
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QuackAttack

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Re: Inital Xiaflex Results
« Reply #14 on: May 19, 2018, 08:41:48 AM »

Better,

Here is how my cycles worked. I went through 4 cycles, then I took 3 months off per URO's instructions and had 4 more cycles. I started out at 55-60 degrees and am now at 30-45 degrees. You have another option after Xiaflex. My URO is giving me 6 cycles of Verapimil. I may or may not improve any further, but it is better that surgical alternatives. After going through Xiaflex, Verapimil is a cake walk, little if any bruising and almost no swelling after a couple of hours.

I would say do the four more cycles and see what happens. You know your penis better than your URO. So, if you think the plaque is located slightly different than where your URO is injecting, have him/her inject in a slightly different place. I wish I had done this with the Xiaflex and I talked to my URO about this with the Verapimil's 4th cycle. My URO checked and he said that he could feel plaque where I directed him.

Remember YOU are the manager of your body and your doctor works for you. However, as with most doctors, they have a God Complex so, approaching it as more of a WHAT DO YOU THINK question won't damage their egos.
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betterbend

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Re: Inital Xiaflex Results
« Reply #15 on: May 19, 2018, 11:33:17 AM »

Thanks for the advice quack.  I was leaning in the direction of trying again after the summer.  I wondered if maybe I started too early and was still undergoing changes.  I also feel two separate plaques on the same side on each side of the hourglassing.  I wonder if its all part of the same scar, or two totally separate ones. But I forgot to ask my doc about Verapamil.  Did you have success with it?  Also your improvements came on the second set of injections? 
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QuackAttack

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Re: Inital Xiaflex Results
« Reply #16 on: May 20, 2018, 07:24:56 AM »

Better,

Some people have a hugh improvement after a single cycle, while others like me had small 3-5 degree improvement each time. Like all treatments Peyronies, everyone reacts differently. Verapimil hasn't done much, but I still have hope for a few more degrees. I am fortunate that I haven't lost erection quality, nor have I had pain like many in the forum. Just make sure to get your URO to answer your WHAT DO YOU THINK question about where you believe improvement might help. I never though of that until I was on my 4th cycle of Verapimil. Had I done this with Xiaflex, I might have had more improvement.
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WhatNext81

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Re: Inital Xiaflex Results
« Reply #17 on: May 20, 2018, 03:05:43 PM »

At each appointment, the dr physically checked for plaque. Asked and had me show where I felt or noticed any changes and I also brought pics from after the previous injections, along with any I felt would be benfical from the time in between. Then did the erection by injection thing and the dr made more observations and compared all the above to notes from the last cycle.

I had the discomfort at the base from being wrapped. A few thoughts. I changed it twice a day minimum. Always leave it on in the shower while it's still swollen. At night, you might be having erections. Even if not full, it's still going to increase in girth with an already swollen penis. Makes sense why the unwrapped area is more effected and the spot where the wrap starts is possibly going to be painful. At night, I would re-wrap it and not do it as tight. Worked for me.

As far as ibuprophen, I was told not to use it. I believe the reason was it interferes with the effectiveness of xiaflex up to 5 days post last injection. Don't quote me, but either way I was told not to and to stick with Tylenol or the like for pain. Some cycles were painful but I stayed away from any pain relievers as much as possible.

Another thought, doesn't ibuphrophen make one more susceptible to bruising?
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