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Author Topic: Xiaflex Made My Curvature Worse?  (Read 495 times)

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johndoe

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Xiaflex Made My Curvature Worse?
« on: November 08, 2019, 05:31:43 PM »

Hey fellas,

So I'm about 3 weeks out of my 1st round (2 shots) of xiaflex treatment with my 2nd round (shots 3 and 4) coming up in a couple of weeks and I'm not sure if I should continue with the treatment or not.

My first shot of xiaflex was nearly painless and hardly any swelling, bruising or pain persisted. My second shot however was a completely different story. Severe pain, swelling and bruising occurred after and I now had painful erections which I didn't have before.

The good news is that all of the above symptoms are going away and getting better everyday. The bad news is that I had my first real 100% erection today and I noticed that there seems to be "more" plaque than before as well as slightly more curvature.

I've read through as many threads I could find of members who've gone down this path and the consensus seems to be that results range from significant improvement of curvature or little to none. I haven't really heard of any members stating that the xiaflex actually me there case worse.

I'm set to see me doc in a couple of weeks and tell him everything and want to see what he says and what my next step should be.

Meanwhile I'm looking for any members on here who have had a similar experience.

Thanks,
JD
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TDix

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Re: Xiaflex Made My Curvature Worse?
« Reply #1 on: November 08, 2019, 06:33:59 PM »

After my third shot I fractured during a morning erection.  Wouldn’t wish that on anyone.  That was after two days of extreme pain and large hematomas.
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46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

samsung

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Re: Xiaflex Made My Curvature Worse?
« Reply #2 on: November 08, 2019, 09:11:11 PM »

Exactly and precisely similar to you johndoe. Except for the pain getting better part. Pain getting worse. And it does seem like I have more plaque now. Although I don't see how that is even possible it could form in a week. Curve doesn't seem worse, but pain amd plaque definitely.
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44 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 2 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

johndoe

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Re: Xiaflex Made My Curvature Worse?
« Reply #3 on: November 08, 2019, 09:23:35 PM »

@samsung I agree, I mean how can the plaque get worse?

So what should we do moving forward? Stay the course or and hope subsequent shots loosen up the plaque or should we cut our losses short here?

Veteran members feel free to chime in.
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shrugs

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Re: Xiaflex Made My Curvature Worse?
« Reply #4 on: November 09, 2019, 04:34:15 AM »

Okay, I'll try a plausible explanation... Maybe as the plaque breaks up, the first few shots affect it unevenly, so either a big plaque becomes more lopsided, or if the doc is targeting several plaques, they aren't all being reduced uniformly so that there are transitory periods where you'll be curving more to one side or another.

Over the course of eight injections, eventually that evens out and you straighten out as things improve.

Is that what's really happening?  I don't know.  I also don't know if I'm going on to round two myself because these shots are rough!

The first shot of round one gave me dramatic swelling and bruising and a bump (probably an internal hematoma) that's still around ten days later.

The second shot was much milder with the swelling/bruising but more painful and gave me a fever for the rest of the day.

These side effects are considerable. It's too early for me to tell how much improvement round one has gotten me but the best case would be enough that I don't see a need to continue.
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Early 40's. Peyronies and mild Erectile Dysfunction started during summer 2018. PDE's worked somewhat but it got worse. First round of Xiaflex Oct/Nov 2019... and ouch.

samsung

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Re: Xiaflex Made My Curvature Worse?
« Reply #5 on: November 09, 2019, 06:34:24 AM »

 My personal feeling is "phuck it." I am going forward. For me, this all heads toward an implant anyway so if more damage is done, good. It will speed up the process. And if not, good, then gains can be made. I don't care at this point. Well, I do, but totally powerless, so onward it is. Will call the doctor a few days before if still in pain and see what he thinks about proceeding. But if I can't do traction because of pain then xiaflex seems pointless.
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44 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 2 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

QuackAttack

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Re: Xiaflex Made My Curvature Worse?
« Reply #6 on: November 09, 2019, 08:26:41 AM »

John Doe,

I think I can offer as good a perspective as anybody on this forum considering I have likely had more needles stuck into my dick as anybody. Two full courses of Xiaflex (16 injections) and 12 rounds of Verapamil. With Xiaflex, your first round of each cycle is usually more mild than the second. Here is the best way to keep the swelling down. You will get wrapped with Coflex after the injection. Either ask your doctor for more Coflex and gauze or go to the drug store and get some. Keep your dick wrapped for 3-4 days. Not fun peeing with the gauze on, but it is amazing how much improvement there is in swelling. Moreover, it will help keep the morning wood down. After one of my cycles of Xiaflex I had an errection around 3am and though I heard a pop with some pain and was freaked out. This occurred before I learned of the gauze trick. I went back in a couple of days later for an ultrasound and there was no fracture. My URO, who was the Chief of Urology at Walter Reed, said Xiaflex will create micro tears, which is what they want. The micro tears is a sign of the plaque breaking up.  If you can use a Restorex concurrently with Xiaflex, I think your results will be better. The Restorex didn't come out until after my Xiaflex treatments were over. I used several extenders to little avail. I started around 60-70 degrees and am around 35-40 degrees now. It has always functioned and without pain. So, I don't know about the pain aspect, but if you are functional and pain-free you can chalk you dick up to a g-spot dildo because it will look pretty much like one.
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johndoe

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Re: Xiaflex Made My Curvature Worse?
« Reply #7 on: November 14, 2019, 02:20:05 AM »

Thanks @quackattack for chiming in. You truly are a road warrior with all the rounds of treatment you've received.

Thanks for the advice regarding the swelling. It's funny that you mention the coflex. I got the coflex wrap after my first injection but not after my second as the doctor (or his assistant) "forgot" to wrap it and nor did I. To say the least the swelling was intense!

I've had some raging hard-on's since my second injection with most of them being nocturnal. I did feel a lot of pain and a throbbing aching sensation on the entire left side of the penis (curved side) I've never felt before but the good news is that everyday it's getting better and better.

@quackattack, I hope you're right about the micro tears. I did hear my penis "crack" one day while I was modeling. The downside to that however is that I feel as if that xiaflex is possibly causing the plaque to get worse.

@samsung and I are having "similar" issues with painful erections post xiaflex and
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P47D

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Re: Xiaflex Made My Curvature Worse?
« Reply #8 on: November 16, 2019, 03:11:45 AM »

YES!!!  In my case with the Xiaflex injections there was quite a bit of pain and it was not until the second round that I learned how to PROPERLY wrap my penis after the shots.  My Dr. was really good and he did do a light wrap with the coflex stretch tape on the first round, but it was a small piece and only right where the injection was placed.  With pretty bad swelling, hematoma, and ecchymosis in the first round and first shot of the second round I tried to wrap everything more securely and it worked GREAT!!!  Proper wrapping for me eliminated the post injection pain, prevented almost all of the swelling and hematoma, and there was only mild ecchymosis around the area of my circumcision scar and near the base of the shaft.  I have some very good pix that show this since I documented all my treatments extensively...however I'm still waiting for Hawk to give me picture posting privileges... :(

-P47D
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Trauma induced 74 degree vertical dorsal curve in OCT 1916 - after 3 years, success with plication.

TonySa

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Re: Xiaflex Made My Curvature Worse?
« Reply #9 on: November 17, 2019, 02:16:27 PM »

Be sure to add traction to the Xiaflex injections (four weeks after second shot until first shot of next round).  See study which shows improved outcomes w traction and even better with restorex.  https://www.peyroniesforum.net/index.php/topic,12667.0.html
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

samsung

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Re: Xiaflex Made My Curvature Worse?
« Reply #10 on: November 17, 2019, 07:24:34 PM »

Hi Tony, where does it say there to start the traction 4 weeks after the 2nd shot? It was my understanding to do the traction as soon as you can following the 2nd because the molecule is only active for a short time.

I haven't been able to do any anyway because of pain, but just saying.

Getting round 2 of xiaflex tomorrow AM. Yay.
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44 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 2 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Bliz

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Re: Xiaflex Made My Curvature Worse?
« Reply #11 on: November 17, 2019, 08:24:30 PM »

TonySa,

"Hi Tony, where does it say there to start the traction 4 weeks after the 2nd shot?"
 
I have the same question as Samsung. I have completed round 4 of Xiaflex and have asked that same question on this forum with 51 views and no response. I have been waiting 2 weeks after rounds 2 and 3, but wonder if I was wasting critical treatment time.
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TonySa

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Re: Xiaflex Made My Curvature Worse?
« Reply #12 on: November 17, 2019, 09:39:57 PM »

That’s what Dr Karpman recommends, I trust his advice.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

shrugs

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Re: Xiaflex Made My Curvature Worse?
« Reply #13 on: November 22, 2019, 04:42:32 AM »

Well, two weeks out from the second injection of round one and I thought I'd try to assess any improvement by getting an erection.

So far, I'm in the same boat as johndoe... The curvature is marginally worse, maybe some loss of size, and I notice a new indentation near the top by the glans. Also, the erection is more "lumpy," partially/possibly due to an internal hematoma aka "nodule" near one of the injection sites that is still clearing up.

I seem to be having more trouble getting a full erection too though at this point I don't know what a full erection would be.

Not encouraging! I am still on the fence about proceeding to round 2 in two weeks or so. I'm concerned this is actually worsening my condition and I should cut my losses.

Is it possible Xiaflex did some damage? I had really bad swelling/bruising/hematoma with my first shot. The last thing I want is to come out of this very uncomfortable course of injections in worse shape!
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Early 40's. Peyronies and mild Erectile Dysfunction started during summer 2018. PDE's worked somewhat but it got worse. First round of Xiaflex Oct/Nov 2019... and ouch.

samsung

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Re: Xiaflex Made My Curvature Worse?
« Reply #14 on: November 22, 2019, 06:28:10 AM »

Shrugs, it might still just be the swelling causing any perceived differences. Mine didn't totally subside for about a month after the 1st round. 2 weeks is too soon to assess.
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44 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 2 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

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Re: Xiaflex Made My Curvature Worse?
« Reply #15 on: November 24, 2019, 10:50:03 PM »

Shrugs, b sure to add traction at 4 weeks after second shot.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

johndoe

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Re: Xiaflex Made My Curvature Worse?
« Reply #16 on: November 26, 2019, 11:16:02 AM »

@shrugs,

(1) Are they wrapping your penis with the bandage immediately post injection?

I just finished my second round (3rd and 4th shots) and I have minimal swelling and bruising as I explicitly told the tech to wrap my penis up firmly immediately after the injection. My erections are also no longer painful.

I think the swelling and bruising definitely come from some of the xiaflex leaking back out from the injection site or at least it was in my case.

I do notice "retraction" of my penis post round. What I mean by that is that I feel like the xiaflex is breaking down the plaque and possible causing some sort of reaction to both the plaque and the surrounding tissues which in turn causes the penis to retract a bit essentially making things "worse."

This is where modeling is needed. Everyday I pull and bend the penis gently stretching out the plaque and xiaflex to it's limits. Everyday I notice the penis getting a little better but it takes a long modeling session daily to get there.

I just feel overall that the amount of xiaflex (how much has been injected) plus the cost (insurance is taking care of it) may not be adding up to the amount of improvement I'm seeing now or will see after all is said and done but then again it's still very early on in the process so time will tell.
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shrugs

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Re: Xiaflex Made My Curvature Worse?
« Reply #17 on: November 27, 2019, 04:15:14 AM »

Thanks for the replies, guys! Really helpful.

-First off, I'm less in panic mode now that the better part of a week has passed since my last post... The internal hematoma has decreased to the point where I'm pretty sure it'll go away in another week or two, and I've been able to have intercourse. (!) I'm nearly back to the same as I was before round one (but not much better).

@samsung Thanks for the observation about waiting a month or so, it does seem like I just had to wait a bit longer to see recovery.

@TonySa I have been adding manual traction 3x daily which I hope is helping!

@johndoe They do wrap me up with coflex immediately after the injection, but the dr.'s instructions are specifically to keep the bandaging on for no more than four hours MAX. That just didn't feel like enough for me, and with both shots I left it on for 8-12 hours until my evening shower.

I think you're right about the Xiaflex leakage, and with my first shot, I may have just been unlucky enough to have gotten one that nicked a vein and caused a hematoma. The second shot was much better with swelling and bruising but instead gave me an overnight fever and a stronger sustained burning sensation. It got a lot better after 24 hours, but was pretty scary.

I'm doing manual modeling as well... There may be slight improvement at this point, but it's hard to tell.

Finally, I agree with @johndoe that I'm doubtful that the amount of improvement I'll see is worth the time and the considerable discomfort of the injections.

I feel like the manual traction is really what's helping, since I didn't do much of that at all before being instructed to do it as part of the Xiaflex regimen. Maybe that's what's making most of the difference... Do I need the Xiaflex as much as the modeling alone?

I'm strongly considering calling it off before round two and instead asking for a daily cialis prescription that I'd combine with continued manual traction for a more conservative approach.
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Early 40's. Peyronies and mild Erectile Dysfunction started during summer 2018. PDE's worked somewhat but it got worse. First round of Xiaflex Oct/Nov 2019... and ouch.

TonySa

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Re: Xiaflex Made My Curvature Worse?
« Reply #18 on: November 27, 2019, 10:26:00 PM »

I’d add actual traction 4 weeks after 2nd shot—especially restorex which shows better outcomes w Xiaflex.
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