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Author Topic: New bump after first Xiaflex shot?  (Read 204 times)

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shrugs

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New bump after first Xiaflex shot?
« on: November 05, 2019, 12:11:55 AM »

Has anyone developed a new bump/plaque after a Xiaflex shot?

Had my first shot a week ago and it was more uncomfortable than I expected. The shot itself wasn't too bad but after I removed the bandage, I developed major swelling and bruising... The swelling subsided after three or four days but I'm still a bit bruised up, sore, and swollen a week later.

I wouldn't be so concerned but there's a new bump where I don't remember one before, and it's more prominent than the plaques I had before beginning Xiaflex. It's also painful to the touch and I'm constantly in a low level of soreness throughout the day depending on how much pressure is on it. I was able to have a few nocturnal erections over the past week so I know things are still somewhat functional.

I saw the urologist for my second injection today and after an exam he actually put off the next injection for three more days for the swelling and tenderness to go down. So it'll be ten days between shots.

My uro said the new bump was a fracture in the plaque and that's it's a good thing overall for the plaque to be breaking up.

I have to admit I had second thoughts about continuing treatment and was concerned the bump could be a tunica rupture or other adverse reaction... I don't remember having a prominent bump of plaque where this is.

Last thing I want is for Xiaflex to make my condition worse, but maybe it's doing what it's supposed to in breaking up the plaque?
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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.

johndoe

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Re: New bump after first Xiaflex shot?
« Reply #1 on: November 06, 2019, 12:31:56 AM »

@shrugs,

Wow I'm in the exact same boat as you.

Just finished my second shot (1st round) two weeks ago. My first shot was painless and only mild swelling occurred after. After the second shot a few days later however, I had significant pain (sharp pains felt throughout the penis), major swelling and bruising that last days and as you have experienced also a new bump, soreness and now painful erections which weren't painful before.

I had about a 30-40 degree curvature exactly mid shaft to the left and some slight hourglassing due to the peyronies. I was able to have full erections without pain and intercourse no problem and opted for treatment which admittedly was more so for cosmetic reasons only after reading all the outcomes posted here.

I'm starting to worry that the xiaflex may have made my condition worse as I now have painful erections. As of now the curvature hasn't improved nor gotten worse so I'm thankful for that.

I'm hoping more forum veterans can chime in on this thread and shed some light on what's going on.
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shrugs

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Re: New bump after first Xiaflex shot?
« Reply #2 on: November 06, 2019, 03:20:04 AM »

Johndoe, well, it's reassuring that perhaps this is a common occurrence in the first round! But yes, more input from veterans would be great... I'm trying to decide what to do next.

I also only had about a 30ish curve up/left too and could have intercourse prior to Xiaflex (though the intercourse had to be somewhat "careful" to be honest), so I've been debating whether to even go forward with the second shot of round one after such a rough last week. Been a lot of handwringing lately over whether I could have tried traction and daily PDE's for longer before resorting to this.

However, now I have this painful bump and figure the rest of the injections will probably be focused on it, trying to get it to reduce in size, which I realize is now my main goal. I did some self-exams today and have come to the conclusion that my doc is probably right, what happened was a thin plaque spread across the top of my shaft may have "snapped" after Xiaflex did its thing and could be bunched up on one side. Which is... good? Maybe. Haven't really been able to judge my erections in my state.

I've resolved to proceed but will have a word with my uro before the shot, confirming if the injection will be at the site of the plaque/bump and stressing that my side effect profile was intense last time... I will mention that I'm less about going for the best possible outcome and more about avoiding the worst possible outcome. Moderate to slight improvement is fine by me.

Also, I don't mind if he doesn't use every last drop in the syringe and will tell him so. In my opinion, it's possible that the volume of Xiaflex routinely injected is more than enough for the intended effect and may even be excessive for me judging by how widely it spread bruising. I'm going to ask him to take it easy.

I'm not sure of the protocol but I've seen in other posts on this forum that uro's like Dr. Lue have given less volume of a shot when a patient has encountered severe swelling and bruising.
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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.

TDix

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Re: New bump after first Xiaflex shot?
« Reply #3 on: November 06, 2019, 04:41:51 AM »

Sounds like 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: New bump after first Xiaflex shot?
« Reply #4 on: November 06, 2019, 04:57:38 AM »

Johndoe and shrugs, in exact same boat. My pain is constant. Painful erections. Flaccid constant pain. Sometimes worse, sharper than others. Can't do traction or modeling at all. Next shot coming up in 2 weeks. Don't even see the point of it if can't do traction and causing more pain.

Shrugs, your bump seems like might just be injection site swelling/hematoma like tdix says.
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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. Torsion to left. flaccid. Xiaflex rd. 1 10/7 and 10/10. PMP traction, heat, VED, arginine, cialis, lipoic acid, vit. K2.

johndoe

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Re: New bump after first Xiaflex shot?
« Reply #5 on: November 06, 2019, 08:41:51 AM »

This is good stuff fellas. We need more vets to chime in and continue to share our experiences.

I to am also debating whether or not I should go for my third and fourth shot (2nd round) in a couple of weeks.

The good news in my case is that every day things get better and better. The bad news however is that I don't know what the xiaflex is doing in my case.

Prior to xiaflex it felt like I had a hard patch of cartilage directly mid shaft on the left side of the penis. Xiaflex was injected right into that "cartilage" and that hard patch now feels like a very hardened putty if that makes sense.

So on one hand I can feel it doing something to the plaque but on the other I'm getting the swelling, bruising, soreness, painful erections and of course no visible improvement in the curvature.

Modeling is possible but it was very painful at first but getting less and less painful every day. The pain level was at about a 9 couple of days post 2nd injection with some really painful nocturnal erections that would wake me up in the middle of the night and not allow me to go back to sleep. Everyday since has gone done one level: 8, 7, 6, 5, 4, 3 (current pain level).

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melting

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Re: New bump after first Xiaflex shot?
« Reply #6 on: November 06, 2019, 08:52:09 AM »

I wonder why there's no additional treatment for the side effects of the XIAFLEX inejections. This comes up frequently.
Seems to me that the XIAFLEX itself does great stuff but the way it's administered creates possibly more problems.

Logically if someone has underlying problems with inflammation and reacts bad to penis injuries/manipulation this can create new faulty tissue. 

Do we know how long the Xiaflex is staying in place, doing it's magic, it's half life? If it's short people should think, IMO, about treating the side effects/hematoma etc. with transdermal anti-inflammatories.(if they don't interfer with Xiaflex doing it's magic) 
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samsung

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Re: New bump after first Xiaflex shot?
« Reply #7 on: November 06, 2019, 10:01:28 AM »

My pain is doing the opposite of yours Johnd. It goes up a level every day. And I can't take any drugs to relieve it. I am going insane with pain. Like someone sticking a red hot scalpel in it.
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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. Torsion to left. flaccid. Xiaflex rd. 1 10/7 and 10/10. PMP traction, heat, VED, arginine, cialis, lipoic acid, vit. K2.

TDix

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Re: New bump after first Xiaflex shot?
« Reply #8 on: November 06, 2019, 02:09:34 PM »

I had the same feelings Samsung.  Again, sounds like an internal hematoma, which are very painful.  Trust me I know.  I had internal and external after my shots
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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: New bump after first Xiaflex shot?
« Reply #9 on: November 06, 2019, 02:51:30 PM »

Thanks tdix. I'm really hoping it is something like an internal hematoma. Can that occur weeks later, after the 2nd shot though?

I hope it isn't some kind of inflammation flare up that lasts a long time. Some people on here in pain for years. I was never in pain prior to the xiaflex. Well, for a few days I was but then it subsided. This has been lasting and getting worse.
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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. Torsion to left. flaccid. Xiaflex rd. 1 10/7 and 10/10. PMP traction, heat, VED, arginine, cialis, lipoic acid, vit. K2.

shrugs

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Re: New bump after first Xiaflex shot?
« Reply #10 on: November 07, 2019, 12:29:47 AM »

Thanks for the feedback, guys. If that bump is an internal hematoma, I hope my doc doesn't try to inject right into it!

He seemed to think it was a piece of plaque during the exam when he put off the second shot.

It does seem to be going down a bit now that I'm ten days after the first shot. The main thing I'm worried about is where he's going to inject #2. I can't feel much distinct plaque besides that bump, but I know there's still some in there...

For me, the pain is steadily improving since the injection so I guess I'm fortunate in that. And prior to starting Xiaflex, I did have some pain with erections so it isn't like things were all rosy beforehand...

I was able to do traction after 48 hours even with swelling and discomfort, but I was pretty gentle to start out. Oddly, at first I felt tension in areas during modeling but that's largely gone now, so maybe I stretched something loose though I don't remember an event.

My flaccid state is also bigger since the injection, but I'm not sure if that's because Xiaflex loosened the plaque or because I still have some swelling.

Metling, it's true that the side effects of Xiaflex are considerable and the most my doctor recommended was ibuprofen... Wish there were some better remedies for the discomfort!
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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.

shrugs

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Re: New bump after first Xiaflex shot?
« Reply #11 on: November 07, 2019, 11:14:22 PM »

Had my second shot of round one today... The doc examined the bump and said it's a fractured piece of plaque with likely an internal hematoma beneath. I asked if the injection would be at that spot and he said unfortunately yes, it's the biggest plaque and the one to target.  :o

He gave me the option of putting it off another week. After considering it, I decided to go ahead. The bump had gone down a little so I figured might as well go for it.

The injection itself hurt about the same as the first, but the side effects were worse this time. Less swelling so far, but a stronger burning pain developed after a couple hours that radiated down to my feet at times. I went back to work after the shot, which is probably something I wouldn't do again.

I also got chills later in the afternoon and come home to take my temperature and find out I have a low fever? 

Only a couple reports of fever on this board, but the official patient instructions say it could be a sign of infection and to call the doc. I didn't find out about my fever until into the evening, so I'm not sure whether I should call tonight or see if it subsides in the morning.

Definitely an Advil PM night!
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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.

melting

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Re: New bump after first Xiaflex shot?
« Reply #12 on: November 08, 2019, 10:18:41 AM »

Well, theoretically a fewer is a good reaction if there's anything to combat within your body.
Makes all sense that the area is acting up due to the shot and due to the plaque breaking up. You can imagine the tissue around it isn't happy for now and has to deal with the new circumstances.

Now theoretically the Xiaflex would also prevent new calcification to come up. I still think docs should add something to the treatment that calms the area of injection and plaque break up. At least ramp up possible oral treatments. The simple Vitamin C(ascorbic acid) is needed to create healthy collagen(take in many small doses orally cause of short half life). MSM supplement can help too.   
(I would go for some transdermals but that's an alternative treatment and DIY)
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shrugs

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Re: New bump after first Xiaflex shot?
« Reply #13 on: November 09, 2019, 01:16:48 AM »

Fever broke overnight but still felt a bit under the weather today...

I will say there was a lot less bruising/swelling on the second shot.
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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.
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