in chronic phase to begin Xiaflex, does it work on hard plaque, need feedback

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norcal1970

So I had my initial visit back in Jan.  I had been having symptoms for a year.  The dr said to wait six months to make sure it through the acute phase before beginning xiaflex.   This doctor told me she treats several patients a day for xiaflex.   So she is experienced.  In my research on this forum it sounds like xiaflex should be done asap and not wait until chronic phase.   I am interested in what other doctors recommend when to start xiaflex.  My plaque has not changed in months nor has my penis shape, which is 60 degrees upwards and 5 degrees right.  The plaque feels like a hard piece of rubber.  Old Man told me that most likely xiaflex won't help since its already hard plaque.  My plaque was hard from the beginning.  It just kept getting bigger until it finished growing.  Still feels the same hardness as when it was the size of a rice grain.

I would greatly appreciate any feedback from other members.   Does xiaflex work on hardened plaque?   Thanks!
51 yo, onset late 2018, painful erections lasted 18 months
70 degree upward bend, 50 degrees after 4 rounds/8shots of xiaflex, post xiaflex still hourglass & major girth/length loss
8 shots of xiaflex ended 5/22
restorex 1hr per day + xiaflex

TonySa

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

When I first went to Dr Lue 5 years ago, he said he couldn't safely use Xiaflex, but offered a surgery (which I now wish I had had). But, when the hourglassing improved on its own, and I saw Dr. Lue in February of this year, he said to do the Xiaflex now, and that surgery was out due to a 40% risk of ED. So, at least with me, there was no time limit on starting Xiaflex.  
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peter123

Quote from: jan.schaller1958 on September 12, 2020, 02:45:57 PM
When I first went to Dr Lue 5 years ago, he said he couldn't safely use Xiaflex, but offered a surgery (which I now wish I had had). But, when the hourglassing improved on its own, and I saw Dr. Lue in February of this year, he said to do the Xiaflex now, and that surgery was out due to a 40% risk of Erectile Dysfunction. So, at least with me, there was no time limit on starting Xiaflex.


what surgery did you wish you had? and why the hell is there a 40% risk of ED with a grafting procedure
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jan.schaller1958

I don't know why a 40% risk of ED that Dr Lue mentioned. He said ,,at my age(62)." So, maybe it's an age thing. I don't know what surgery he was offering (that was 2015) because I didn't ask (I should have). It was probably that plication/alloderm grafting surgery he can't do now because back them I had bad hourglassing, which went away on its own. All I was thinking about back then was Xiaflex. I didn't know anything of their surgical options in those days.  
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scronan

I am 12 days past my first round of Xiaflex and have been using RestoreX for daily traction as recommended by my Doc. I have had a hard plaque for nearly 5 years now and have just dealt with it, but now it's time to try and correct the issue. First 12 days without sex/masturbation in a long time and I am going to try and keep that going for at least 90 days to give the healing process it's best chance. All we can do is try our best and see what pans out long term, right?


 
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jan.schaller1958

I asked a doc yesterday, an internist who knows about Peyroines and Xiaflex, and asked if it's less effective if you wait to the chronic phase, or too long. He said, ,,absolutely not. It doesn't matter how long you wait to start it. It's no less effective."  
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peter123

Quote from: jan.schaller1958 on September 14, 2020, 11:21:29 PM
I asked a doc yesterday, an internist who knows about Peyroines and Xiaflex, and asked if it's less effective if you wait to the chronic phase, or too long. He said, ,,absolutely not. It doesn't matter how long you wait to start it. It's no less effective."

Thsy also did studies on different protocols and figured that 3ninjections can achieve almost the same success as the full 14 or so injections if you spread them further apart. Some interesting studies on this and this could really save some money bc 3 injections could be paid out of pocket much easier  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

john.doe.550

My doctor describes the hard plaque as, "It's like a dense tree bark."  The Xiaflex injections he has made: 1) dissolved two large, soft plaque masses - sometimes slowly, sometimes quickly; and 2) partially, but not much, dissolved hard plaque.  With the hard plaque, Xiaflex worked on the edges making the hard plaque a little smaller.  It also smoothed the ragged edges originally on the hard plaque. This reduced discomfort.  It also made the top, bumpy surfaces smoother and entire hard plaque mass thinner.  However, Xiaflex is not dissolving the majority of the hard plaque.  I wish it would / could.
Age: 65. Peyronies Disease in MAR 2019. 90 dgree upward curve.. Immediate &  severe. Xiaflex, APR 2019 to early 2021, slow but minor improvement through 2021. Incisional corporoplasty surgery completed in late 2022.

Shane43

I had a hard, but supposedly not-yet-calcified plaque (~3 cm x 2cm) at base of penis. After 3 series of injections (first 2 from the right side, last one from the left, each time multiple injection points in the plaque), it is maybe 25% smaller, still just as hard, but very good results on decreasing hourglass indentations and rigidity/stability at the base of penis where I can finally have sex again, albeit carefully still.

An update from my posts on other threads. After 3 series of Xiaflex injections, I decided to wait on a 4th series of injections due to the increasing complications with each series of injections (bruising was worse, pain lingering longer each time, but no where near the hematoma problems some have had). After two months the plaque seems the same size, but the indentations continue to get smaller and I finally have enough rigidity at the base of the penis to have sex, albeit pretty carefully. So, perhaps this might have healed on its own, but I suspect it is the Xiaflex, perhaps in combination with 25 mg Cialis and Co-Q10 and vitamin E. I have not used traction or Vacuum, and only have done a little manual "modeling" as my urologist didn't think a few minutes of modeling each day would help. I did get myself hard each day for at least 30 minutes (when my penis was no longer hurting from Xiaflex injection). I am fortunate to have a wife who enjoyed helping with that part of my "self-therapy" :). So, update is Xiaflex seems to be working and I will wait longer to see if I get the 4th series or not.
62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No ED. 3 rounds Xiaflex decreased plaque/indent/hinge/bend. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.