Intro to board

[francisr]

Hello to all. Recently diagnosed with peyronies. Dr is recommending Xiaflex injection series. Reading about side effects concerns me. I guess the question is what is the frequency of some of the worse ones like the swelling and bruising being such that one would need to miss a couple of days of work. Also, the possibility of penile fracture is scary, as surgery could be need to repair. ANd the list goes on......Any comments?

[Jonbinspain]

I'm not sure that I understand. Has your Urologist diagnosed a penile fracture?  If Peyronies has been diagnosed, is Xiaflex all that he has recommended?

You can read about Xiaflex here on the site, from those who have been, or are undergoing treatment.  

[francisr]

No, he has not diagnosed a penile fracture. I just read that a fracture could be a side effect of using Xiaflex. And yes, the Xiaflex shots are all he is recommending

[james1947]

francisr

I don't understand your posts at all.
Do you have Peyronies?
What are the symptoms?

James

[francisr]

OK, sorry if my posts were confusing, so let's try again. I have been recently diagnosed with peyronies by a noted Dr in New Orleans. They conducted an ultrasound test to confirm. Symptoms are the curvature when erect, pain when erect, plaque, hour glass effect, etc. He is recommending treatment with Xiaflex shots. I have read about the potential side effects and was hoping people who have been through this treatment regimen could let me know their experiences and how bad the side effects really are.
thanks

[james1947]

francisr

How long time ago you started to feel the symptoms?

James

[francisr]

7 months ago. It came on and progressed very fast

[Jonbinspain]

Francis;

I have no personal experience of Xiaflex. However, there is a thread on the site for those who have undergone, or are undergoing treatment. I suggest you join that thread. You can send P.M.'s to those you think might help you.

[james1947]

francisr

In my opinion you are still in the acute stage. Your Peyronies will continues progressing fast if not treated, as I know (but I may be wrong) Xiaflex is used after you are in stable condition.
In the mean time, you may want to take Pentox, low dose Cialis, Ubiquinol to stop the progression.

James

[hope4all]

Thanks for posting francisr. The trials for Xiaflex only focused on those individuals who were outside of the acute phase. I'd be more concerned if you had constant pain when flaccid rather than erect. From what I've read, you would still be in the acute stage...and who is to say the shots wouldn't work as well or even better if you are still in the acute phase? Because they didn't include those subjects in the trial we don't know.

I remember when I was in my acute phase the plaque was very dynamic, some days hard others not so hard, but there was a constant dull pain and more pain when erect and with sex. The curve shifted and went left and up then centered and went to the right...ultimately coming back to the center with a 60 degree curve. That took about 6-9 months I guess.

With Xiaflex, be prepared for serious bruising and in some cases very irritated red skin, and hematomas. I bruised all the way down into my scrotum a few times now. It doesn't last too long, maybe a week, and you can still go about your normal routines including work. I've experienced somewhat uncomfortable erections at night but after a week that too dissipates. I usually receive the shot in the morning and go right to work, no problem. Not sitting all day at a desk has also helped me...i bought a standing desk and stand most of the day now.

After my last shot 9 days ago, I had a business trip I couldn't miss...hopped on a 3 hour flight, had hours of driving the following days...that was not fun, but still manageable.  

The doctor's technique makes a world of difference from what I've read here.  

[james1947]

As an introductory topic, the topic has reached his end.
Please post/open topics on the relevant subject boards

James