Xiaflex and plaque near urethra

[user of no names]

Well I had an appointment with Dr Trost at the Mayo Clinic yesterday and it didn't do as I expected.  It has been 1 year since I last saw him.  I originally got approved for Xiaflex last year but he told me to hold off as the drug was still new and long term side effects weren't yet known.  I have a 10 degree bend to the right, 20 degree downward, and 35 degree clockwise rotation.  The main plaque is under my urethra.  While the FDA has said it can't be treated near this area because of possible complications, he doesn't think there would be an issue.  Dr Trost was waiting for other physicians to try this area before he does.  He said it would be difficult for insurance to approve such a procedure.  There may be a possibility down the road once more information is found.  I will continue to take pentox, ubiquinol, l citrulline, and add in ved and traction.

Some other tidbits that he shared.  Dr trost and his assistant have done over 1000 injections and are among the most experienced in the country.  1/3 of people improve significantly, 1/3 saw some improvement, 1/3 saw no improvement.  The better results came from more aggressive modeling.  He advised people to wait 1 month before sex to avoid fractures and hasn't had any incidents.  They inject mostly into the plaque but some healthy tissue will become damaged.  The point of maximum curvature is the ideal injection site even if the majority of plaque isn't there.  Women can apparently get peyronies in their clitoris which I never heard before.  He believes there are 2 types of peyronies depending on their age.  Dr trost also mentioned the pentox and ubiquinol study from iran being retracted because of issues with procedures.  He will still prescribe pentox if the patient finds it helpful.  I have seen 7 different urologists before, including Dr levine, and would recommend him over everyone else.  He spent a good amount of time listening to my concerns and answering questions.  There aren't many urologists that care and I am thankful to see him.

Jesse

[hope4all]

Thank you for posting, this is very interesting and reliable tidbits of information. From what I've read here, Dr. Trost is respected in the field of Peyronies treatment.

So far, I'm in the middle category of Xiaflex patients, with one more round to go. I think those patients with fairly new plaques, just outside their active phase probably benefit the most. My plaque has definitely gotten shorter and narrower but what remains is hard.

My doctor feels the same way about injecting at the point of maximum curvature. I show him photos of my erect penis from the night before which he finds extremely helpful. As a result, I avoid shots to induce and reduce erections before the xiaflex shots.

[NeoV]

I'm sorry I didn't catch this post earlier.

My Peyronie's is purely ventral from what I can tell, with denting and slight curve only on the underside. I'm wondering if xiaflex would be worth it for me.

The news about the Iranian study is VERY interesting, since it's regarded as one of the beat studies on any supplement and Peyronie's... Some of us swear by it though I can't tell a difference short term while taking it. I've taken it long term and still do however.