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Author Topic: First Xiaflex round  (Read 1083 times)

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bwg

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First Xiaflex round
« on: August 31, 2020, 07:14:00 AM »

 Developed a 30 degree upward bend mid shaft  and a 20 degree right bend over night about 5 months ago.. Can not associate this to any specific injury... real bummer...  Have my first Xiaflex shots scheduled today. Nervous as a squirrel. Going to combine this with traction. Dr. suggested RestoreX . Will keep you posted on my journey. Any feed back or suggestions would be greatly appreciated.
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age 68 Diagnosed with Peyronies 3/2020. 30 degree up and 20 degree left curvature. Happened overnight. Looking to start Xiaflex treatment shortly.

bwg

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Re: First Xiaflex round
« Reply #1 on: September 04, 2020, 07:37:22 AM »

Completed the first round of two injections. The first injection was a charm. The Dr induced an erection and marked the injection site. Then deflated and numbed me. There was no pain or swelling. Has only a light bruise the following day around the injection site. The second injection two days later was not quite the same. My penis swelled a bit and turned a solid purple like an eggplant. The Dr said this is a very strong drug and if any misses the plaque this is the result. There was not a lot of pain... maybe a 1 on a scale of 10. He said in a week or so would begin to clear up. Will start daily modeling and in two weeks add traction.
Will kep post on the results and progress. Second round for now in 6 weeks.
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age 68 Diagnosed with Peyronies 3/2020. 30 degree up and 20 degree left curvature. Happened overnight. Looking to start Xiaflex treatment shortly.

TonySa

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Re: First Xiaflex round
« Reply #2 on: September 04, 2020, 11:56:46 AM »

Did he agree w restorex as your traction device?  Any comment on straight traction vs against the bend during xiaflex?
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

jan.schaller1958

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Re: First Xiaflex round
« Reply #3 on: September 05, 2020, 02:22:18 AM »

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bwg

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Re: First Xiaflex round
« Reply #4 on: September 05, 2020, 07:02:06 AM »

Yes My doctor recommended the  RestoreX. Had no discussion regarding straight vs bend traction. Will ask about this prior to my next session.
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age 68 Diagnosed with Peyronies 3/2020. 30 degree up and 20 degree left curvature. Happened overnight. Looking to start Xiaflex treatment shortly.

Shane43

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Re: First Xiaflex round
« Reply #5 on: September 05, 2020, 11:51:17 AM »

This is mostly in response to Jan's concerns. I have had 3 series of Xiaflex injections (6 injections total). I have hourglass shape at base of penis. I would say I am at least 50% better, but still too unstable (hinge effect) at base to have sex easily...but we do it. So, I have had increasing amount of bruising and swelling with each series of injections. The second injection in the series is always worse than the first and each subsequent series is worse than the previous one. My 6th injection was 3 weeks ago and I still have soreness and some swelling. My doctor and I agreed that we would take a break for 2+ months and see what happens, rather than go ahead with the 4th (and last that my insurance covers) in 3 weeks as normally scheduled. So, your concerns are warranted, the pain and swelling is not fun and the bruising is a bit scary to see. But for me, it has been worth it so far. By the way, my urologist is not really a specialist in this area, but he has had over 100 patients get Xiaflex with him. He does not recommend traction or VED during this procedure as he has had several patients do that and have serious problems, probably because they did too much or too strong, but still. He also said that manual modeling is almost impossible to do harm, but also not likely to do much good. Again, only a 100 or so patients with Xiaflex, but he said the published medical literature on this is based on very few data, not very well controlled studies (but he said this is just the nature of small poorly funded studies). BTW, the pain of actual Xiaflex injection last just a few seconds, don't bother with numbing injection. Why get two injections? The pain is the swelling that happens later. I use ice the first 40 hours and heat pad a fee times a day for 15-30 minutes for the next week to help limit swelling. have no idea if that helps, but i do it. Good luck!
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60YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend by ~50%. Can now have careful sex, but now getting worse. Saw Dr. Levine, will start PMP for 6 months

TDix

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Re: First Xiaflex round
« Reply #6 on: September 05, 2020, 04:41:15 PM »

It’s a long process with this drug.  For me I couldn’t get the second injection so close to the first, due to swelling bruising and pain, so they were spread out a week apart.  Then 2 weeks of stretching before sex is allowed (so a 2 week window until next round).  First shot of second round....well you don’t wanna know in my case.  Maybe it was the uro, but that was it for me.  More painful than surgery for myself, and surgery was more painful than the implant.  So I basically went from most painful being the easiest first round of action, to less with surgery, and finally even less with implant.  Just my experience FYI
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

bwg

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Re: First Xiaflex round
« Reply #7 on: September 05, 2020, 06:51:45 PM »

Jan...Shane 43's reply is fairly accurate with at least my second round. I hope  he is wrong for me on future rounds.. that being said just make sure your Doctor has a fair amount of experience with injections as its all about hitting the target and no more...I'm sure  easier said than done.
FYI my Doctor told me to wait at least two weeks before I start traction. In the mean time I'm just doing hand modeling. My friend is still quite purple and itchy but the swelling has gone done quite a bit. Not a lot of options so hang in there .
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age 68 Diagnosed with Peyronies 3/2020. 30 degree up and 20 degree left curvature. Happened overnight. Looking to start Xiaflex treatment shortly.

GaussRifle

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Re: First Xiaflex round
« Reply #8 on: March 08, 2021, 02:23:26 AM »

bwg, update please ?
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

PeteNYC10003

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Re: First Xiaflex round
« Reply #9 on: March 10, 2021, 08:51:18 AM »

I had my first xiaflex shot on Monday (it's Wednesday today).  I have a hard plaque below the head of the penis.  About a 65 degree bend.

First reaction was swelling at the injection site, but not too bad.  Some lower abdominal tightness (not really pain).  The next day the swelling was on the other side and then at the bottom of my shaft.

Bruising started at the injection site (near the top under the head) and today is on my right testicle.  I can only assume that some of the xiaflex missed the plaque or leaked out and worked its way down.

I've used RestoreX 2x/day throughout.  15 minutes straight and then 15 counterbend. 

Despite the swelling and bruising there has been almost no pain.  As bwg said, maybe 1 of 10.  Pain with strong erection is about the same as pre-shot, i.e. not much thankfully in my case.

Not looking forward to shot 2 tomorrow (the first shot really hurt), but so far the side effects seem to be pretty consistent with what's reported for xiaflex.
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GaussRifle

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Re: First Xiaflex round
« Reply #10 on: March 10, 2021, 12:52:15 PM »

I wonder why most people post about the first round of Xiaflex and then never come back to give updates or progress. Writing your journal about the first round and then discontinuing gives no valuable information to people.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

PeteNYC10003

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Re: First Xiaflex round
« Reply #11 on: March 12, 2021, 09:25:15 AM »

Got my second shot yesterday.  Once again, hurts a lot but it's really only about 20-30 seconds so it's manageable.

Much more injection site pain this time.  Still hurts and very tender to the touch.  Was able to use the RestoreX fine in the straight position, but only one click on the counterbend because the pain was too much.  Have also been doing some manual modeling, which is fine.

Spontaneous erections very painful, again because of the injection site pain.

That said, much less swelling this time, so I'm hopeful that more of the drug went into the plaque.  Still have bruising from the first shot on Monday but it's starting to fade.

Will report back in the next few weeks before I go for round 2.
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PeteNYC10003

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Re: First Xiaflex round
« Reply #12 on: March 21, 2021, 04:11:06 PM »

Have been doing hand modeling and also using RestoreX twice a day for 1/2 hour - 15 minutes straight and 15 minutes counterbending.

Sadly, don't see much improvement in either length or bend. Going to keep at it and definitely do at least another round.
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GaussRifle

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Re: First Xiaflex round
« Reply #13 on: March 21, 2021, 04:19:33 PM »

We support you. Don't give up. Many ppl see improvements in 3rd or 4th rounds.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

matty1998

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Re: First Xiaflex round
« Reply #14 on: March 21, 2021, 04:21:24 PM »

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matty1998

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Re: First Xiaflex round
« Reply #15 on: March 21, 2021, 04:23:32 PM »

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PeteNYC10003

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Re: First Xiaflex round
« Reply #16 on: March 21, 2021, 05:09:41 PM »

Thanks guys. I really appreciate the encouragement!

I'm definitely going to keep posting through the process.  I've got a 65 degree bend and a pretty hard plaque.  No Erectile Dysfunction or blood flow issues and I get spontaneous erections at night so no Cialis yet but I'll ask my doc about it.

The plaque isn't calcified but my understanding is that harder plaque is tougher and may take longer.

I'd be happy to end up <45 degrees and with 1/2" in length back.  Seems possible based on the study below, which I'm following.

https://www.jsm.jsexmed.org/article/S1743-6095(19)30432-1/fulltext

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PeteNYC10003

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Re: First Xiaflex round
« Reply #17 on: May 09, 2021, 07:55:23 AM »

Just had my second round of Xiaflex shots.

As a reminder, I have a very hard plaque and saw little to no improvement after round one.

The shots this go around hurt about the same.  The first one the doctor (Eid in NYC) nailed it.  He actually had a hard time pushing all the medicine in because the plaque is so hard, but afterward there was a little swelling but almost no discoloration.  The second shot he had a harder time, but we thought it might be because the plaque actually felt softer.  Definitely had some bruising and 3 days later it's still about swollen and purple.

I was able to use the restoreX twice a day through all of it.  15 minutes stretching and 15 minutes at a bend - either 3 or 4 clicks on the device, which by the way hurts a lot after shots.

I'm really happy to say that I have already seen a big improvement.  Much less bend and I feel like I've also gotten a bit of length back.  Fingers crossed the progress continues.

Happy to answer any questions.
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PeteNYC10003

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Re: First Xiaflex round
« Reply #18 on: July 05, 2021, 04:50:39 PM »

Turns out the improvement wasn't as big as I thought but there's some restoration of length and my penis doesn't turtle anymore, which is really nice.

Had the third round.  Dr. confirmed what I thought - plaque feels a little smaller.  He also said it was smoother around the edges which he said was good, but I'm not 100% sure what that means.

I tolerate the drug pretty well and he is very good at getting most of the medicine into the plaque so the swelling and bruising are minimal.  So my current intention is to go for all eight rounds.

I'll report back after each one.  My one real complaint right now is that the tip of my penis is perennially purple-ish from the restoreX clamp.

I feel like I'm coming to grips with the fact that this is just not an easily curable condition if it is at all.  So I'm just hoping for enough improvement to get me feeling more confident.
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GaussRifle

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Re: First Xiaflex round
« Reply #19 on: July 05, 2021, 05:02:01 PM »

Pete NYC I'm down 2 rounds of xiaflex and have almost the same experience as you. I "turtle" a lot less at the spot of indentation in the flacid state while passing bowel movements of in general which made me happy. It improved indentation slightly and minor curve improvements, I feel traction is doing bulk of the job in terms of curve improvement until now. But dcotor told me to continue through all 8 shots because experience has shown plaque might need to be dissolve a certain amount before it suddenly gives away or breaks in the middle. It is infact more common in some men to see improvements later on like 3rd and 4th rounds.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

PeteNYC10003

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Re: First Xiaflex round
« Reply #20 on: July 06, 2021, 04:17:09 PM »

Thanks for that info!  It's encouraging. 

I agree with you.  I think the RestoreX is doing the bulk of the work so far, but I have seen some reduction in the plaque so fingers crossed.
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PeteNYC10003

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Re: First Xiaflex round
« Reply #21 on: August 29, 2021, 07:32:38 PM »

4 rounds down and not a whole lot of improvement.  Kind of resigning myself to this, but I'll continue with the next 4 just to see what happens.

Doc says Peyronie's is the most frustrating condition he treats.  He is really skilled and nails the plaque almost every time.  I can tell when he misses because the bruising is more intense.  But so far, no complaints with him.  It's Dr. Eid in NYC.

I don't have Erectile Dysfunction so surgery seems like a pretty dramatic option but I'll reassess at the end of the full 8 cycles.  Sorry for delays in reporting.  Been a touch down. :/
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