Xiaflex treatment at UCSF

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Hi all. I thought I'd take some time to contribute to this forum after much lurking.

I was diagnosed in 2015 at the age of 28. I have a genetic predisposition to this, as both of my parents have dupuytren's contracture. I cannot identify any trauma, but perhaps there were microtraumas. I was not offered treatment in the acute phase. I experienced loss of length and girth and ~35 degree curve with two palpable non-calcified plaques.

Thankfully, my husband has been incredibly understanding. I do not have penetrative sex but would have pain during any and all erections, which made it hard to enjoy sex.

I had two shots of Xiaflex in 2018 at Emory University and it was terrible (I cannot recall the physician's name). It was painful and I experienced a brutal hematoma. I had some improvement in girth but overall was disappointed with the result. I did not return for any additional injections because of how painful it was and decided to ignore it to the best of my ability. I should have taken better care of myself.

Well, I now work at UCSF and was able to schedule an appointment with Dr. Lue at the urging of my husband, who kept emphasizing that I should take better care of myself. Dr. Lue is absolutely fantastic. I first had a telehealth appointment with him and then visited in person for an ultrasound. He states he usually recommends Xiaflex first, and said I was not a good surgical candidate because my largest plaque encases a nerve.
 
I have had two shots of Xiaflex thus far and am now undergoing my second set this week. He injects Xiaflex at multiple points within the plaque and recommends Restorex or manual modeling after the second injection. I had mild bruising after the first set of shots. My curve reduced to ~20% and my pain during erection has reduced ~75%. This past week he told me that my primary plaque (we are focusing on one at this moment) is significantly softer.

I'll update once I finish the full cycle. But, overall I have been really happy with his care and am glad I sought treatment again despite having a bad first experience with Xiaflex. It goes to show there is a huge variation in skill in treating Peyronie's and administering this treatment.