Xiaflex Doctor in the NY/NJ/PA area

[bummedout]

I think I'm gonna man up and just go the Xiaflex route.  I'm trying to get information on this site on who is the most experienced and best at Injecting Xiaflex to get the best result in my area.  Any additional thoughts and recommendations would be great.  Thanks.

[james1947]

Until you will get a specific answer, you may find a uro close to you here:
https://www.peyroniesforum.net/index.php/topic,4063.0.html
Call the office and ask how many Xiaflex treatment they have done.

James

[gringoviajero]

U.S. Bioservices can help too.  They have on file the names of doctors qualified to administer the drug and how many patients they've treated.  Some USB people are more helpful than others, just persist until you reach someone willing to tell you who in your area has the most experience.  It made all the difference in the world to me.  I'm now getting treatment from a guy who's internationally recognized.  Got my 6th shot today, in fact.  Experience counts for a lot with this drug.

[bummedout]

Thanks....who's treating you?

[gringoviajero]

Rafael Carrion at USF Health in Tampa; one of the country's top Peyronies Disease doctors.  He and his colleague, Dr. Bickle, are presenting a Peyronies Disease paper at the AUA conference in San Diego in May.

[bummedout]

That's great!  So I'm assuming US Bioservices produces Xiaflex now?  I'll call them Monday!  How much success are you having so far?

[gringoviajero]

The initial cycle produced no improvement and, of course, was a great disappointment.  For the 2nd cycle we, the doctor and I, got aggressive and I improved from about 33º to about 25º.  I have soft plaque nearly identical to that of X2 here on the Forum.  It's like a tendon running nearly the length.  It has to be treated differently than hard plaque.  Carrion said I'm a very unusual and difficult case, so he's throwing the kitchen sink at me.  4 and 3 days ago I had the 3rd cycle injections.  Right now my genitals look like they belong on Ray Charles (and I don't mean when he was alive).  I exacerbated this by using my VED yesterday.  I should have waited another day.  Early modeling is important despite the protocol, but that's a whole other topic which you can read about in my other posts of the past month.  I expect this to bring me down to 15º and may be the final cycle, providing I'm very serious with the modeling.  (The protocol is nonsense.)

BTW, USB doesn't produce the drug, Auxillium does, but they're the intermediary.  They handle the logistics of insurance verification, purchasing, shipping, etc.  They have a very cool program wherein they will give you a "credit card" to pay for your deductible.  Mine was $950 and they covered it.  It's not that they're being Christian; it's just smart business.  They don't want your deductible to prevent you from ordering the drug.  There's very serious money involved in all this.  

[Crooked_Stick]

Gringo....I have an identical plaque. soft and run the entire length on the top side. I just finished the first cycle of xiaflex yesterday. I had zero swelling or bruising and as far as I can tell no improvement. If you don't mind go into a little more detail as to what you are doing immediately after the injections, thanks and good luck!

CS  

[skunkworks]

Hi Crooked Stick, did your doctor perform modelling after the injection or did he instruct you to do it yourself?

[Crooked_Stick]

Self modeling.......VED during the week and extender on week-ends.  

[gringoviajero]

I'm sorry I didn't reply to you after your note.  If you look at my posts you'll see the reason why.  I had to have emergency surgery shortly after my post.  They thought I had a fracture.  You can read about it.

My last cycle comes next week.  I will avoide the VED (for obvious reasons now) and do hand modeling twice daily plus a stretch strap I invented.  The 3rd cycle was a complete waste of time (and insurance money) because of the hematoma and resulting lack of modeling.  Modeling is imperative.  I anticipate good results once again, but it requires dedicated modeling.