New to the forum from Boston starting Xiaflex

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Protracta

Hello to the forum members. I've learned a lot about the disease from these boards so I figured, since I'm about to be treated with Xiaflex, that I may share my experience to give others information.
I'm 47 and was diagnosed with Peyronies a couple years ago. I have two pieces of plaque just before the head on the top of the penis. I was told to take Glucosamine and L-Carnatine daily. That did nothing. Since the diagnosis it has plateaued and I began seeking treatment. My urologist recommended a Dr. who he said was one of the best in the field. I was going to have surgery but waited for the Xiaflex to be available. On my last visit to Boston University Medical Center I had an ultrasound and was given some information on the Xiaflex treatment. My doctor is Dr. Munarriz. He explained I had an 80° curvature. We discussed the options of treatment and the prospect of Xiaflex use. He believes the Xiaflex injections are my best option before surgery. He explained if we could get enough of the curve eliminated with injections than surgery could be avoided. He could also surgically add a small stitch after the injections which would get us a few more degrees without shortening. His main worry is my age. I'm 47 and have no erectile dysfunction. Since there is a side effect of possible erectile dysfunction he wants to be conservative. He mentioned I'd be using a straightening device along with modeling. I am waiting for my insurance to approve the Xiaflex which he claims is $4K per injection. I have Blue Cross PPO and they pay for everything.
So, I hope I can answer any questions and maybe provide info for others. I know I left out a ton of important details so ask and I'll find an answer.

james1947

Protracta

Wish you be approved for Xiaflex as it is much preferred on surgery.
I don't understand the:
Quotesurgically add a small stitch after the injections
I never heard about such thing and I am reading everything possible about Xiaflex on the forum and other sources.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Knight

Good luck Protracta! It sounds like your doctor is very wise and thinking outside the box by combining a couple of approaches to get you straightened out. Very interesting! I'll be watching and pulling for you!

Good luck!

Knight

Protracta

Thanks James and Knight for the encouragement.

The stitch he would add was described something like this.

With the Xiaflex injections we hope to go from 80 degree curvature to something manageable. Once we get to what we think is the limit of the Xiaflex can do, we also have the option of surgically placing a small stitch to get a few more degrees, without the shortening or other problems that may occur when having to use grafts and more stitching to counter the curve. I think he means that anybody could have this non evasive stitch to relieve a small degree of curvature. With a big curve you would not get much relief from this stitch. However, if you get some decent results from the Xiaflex, the stitch will add to what the injections had fixed. You may go from 80 degrees to 40 degrees with the Xiaflex and the stitch may get you to 35. Any more stitches or graft would cause shortening and possible ED.
Does that make any sense James?

james1947

Protracta

Thanks for the explanation. His proposal sounds logic.


James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

LWillisjr

The stitch sounds to me like a small bit of plication surgery to resolve any remaining curvature.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Protracta

LWillis, I believe you are correct. he also gave me a prescription for Cialis even though I have no problem getting erections. I'll put them in a drawer in hopes I get straightened out. Then I'll go on a Cialis bender!

Bad choice of words...no bending.

james1947

Protracta

Regarding Cialis:
Low dose daily Cialis (2.5 mg if don't have ED, 5 mg if have ED) taken with daily Pentox and VED, showed improvement in curvature.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Protracta

Thanks james1947.
I will find out Tuesday if my insurance approved the Xiaflex.

Is that Cialis cocktail (seems the puns are easy on this topic) given post Xiaflex treatment or is it a conservative treatment for minor curvature?



james1947

The "Cialis/Pentox/VED cocktail" is a treatment that worked for some members and have some support in files in the library. It is not connected to Xiaflex.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Protracta

I was approved for Xiaflex treatment.  ;)
I have appointments for 3 injections. They scheduled me on a Monday, Thursday, Monday routine. I'll start these on the 8th of January and report back with details.

james1947

Wish you good outcome from the Xiaflex Protracta.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

This topic is locked as an introductory topic.
Please continue the discussions on the relevant boards.


James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum