My Xiaflex experience- 3rd round of shots

[daved2]

I went for my third round of shots on December 21st and 28th. Instead of the usual swelling and bruising, for my first shot, I experienced no bruising no swelling or any of the typical pain afterward , associated with the shot. I found this to be unusual because my previous two rounds, I bruised, turned purple, and had pain and swelling. At first, I thought this was just an anomaly, but it happened again after the second shot,  just like it did during during shot number one. This experience leads me to believe that the medication was, for lack of a better word, a "dud". Has anyone experienced such an anomaly with their shots? Mind you, the same vial of medication is used for each round, again, leading me to believe that this batch was a dud. For as much as we spend for this medication, I feel that there should be some explanation, and/or accountability, on behalf of the manufacturer. Your thoughts?

[gringoviajero]

I believe the dose in one vial is for one injection.  There's a page of physician's instructions on Auxillium's site where that can be checked.  Certainly sounds like there's a problem, though, and you'd want the doctor to see the proof a.s.a.p.

[Bigolie]

Same exact thing happened to me on the second round of shots, however the shots did work in reducing my plaque.  Prior to the second round I could feel a lump of plaque right where my hour glassing and curve started.  My Uro shot the Viaflex right into the lump and by the next day it was gone.  My thought is that your body may have an initial reaction to the xiaflex the first time you receive it, but the reaction is less as you continue to receive the injections.  It seems, based on the accounts of others on this forum, the swelling and bruising is at its worse during the first series of shots and dissipates as you continue to get more injections.  

[daved2]

Thank you Bigolie and gringoviajeo for your comments. FYI- I am quite certain that one vial is for 2 injections. At $6K a pop, I vial per dos would double the cost of the procedure. That is why each injection in a cycle is only a week or less apart.

[gringoviajero]

Here it is.  I kept a copy pdf on my laptop, and found the original on-line again.  It's rather interesting, very precise instructions.  I get my 2nd round Tuesday and Wednesday.  First round did absolutely nothing positive.  Fingers crossed.


http://www.xiaflexrems.com/downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies Disease-(5)-(1).pdf

[Pfract]

I couldn't open the link, and I copied the whole thing....  

[skunkworks]

This is the link http://tinyurl.com/z9kun6r

Had to use a url shortener as 'Peyronies Disease' kept on being replaced by 'Peyronie's disease'.

[BX642]

My 3rd round first shot was also without any pain, swelling, or bruising. I did feel as if the plaque softened though. My doc waits one week between injections. By the time I had my second injection of round 3 I did notice a hardening of the plaque. The 2nd shot was the most painful out of 6 and the swelling and bruising returned.

I will provide a write-up of my full experience once the 4th and final round is complete. At this stage I have not seen any exciting results.

[mstuzin]

Hello everyone,

First of all please excuse my English. English is not my first language.

I was diagnosed with Peyronies 6 years ago. It was devastating for me. My wife left me because of that. I have not have any sex since then. I did not see or seek any help till recently.

I have curvature at the base of my penis on the left lateral side about 40 degrees.

The plaque is very soft. I get erection. Looks very weird and makes me feel awkward. It is very emotional to me.

I live in Boston. I went for my first round of shots few weeks ago. The doctor was very nice and polite. I do not think they understand how much of an emotional issue this can be for us.

For my first shot, I experienced bruising and swelling which was fine. He did the modeling for me on the third visit after the second injection. He asked me to do modeling and stretching as much I can for the following week, which I did. I have seen improvement.

My penis has about 20 degrees now...BUT...I have developed some kind of in caving or indentation it is like a band in the lateral side got deeper. The erection is good. I have no pain. I did not regain any length as pre peyronies. I am schedule for the second injection in 6 weeks.

My question is should I go for it or just live with it?

Thank you very much.

[james1947]

mstuzin

I had no Xiaflex injections (the price is forbidding for me) but I was going forward with the injections.
Yourself has stated that you had very big improvement, 20 degree now from 40 previously.
Regarding the "caving or indentation" you should ask your uro, it may go away with the next injection or maybe later you will need to use VED to correct it.
Wish you continue with the improvements, please keep us updated

James

[gringoviajero]

James - speaking of using a VED on waisting/indentation: I have an idea for using vacuum to treat this problem.  I proposed it to Dr. Carrion, and he thinks it's a possibility.  As you know, I use a homemade VED made from an aquarium vacuum tube and a VacuuVin wine sucker.  My idea is to use the VacuuVin and its rubber stopper with a 1/2" PVC pipe fitting.  The fitting is about 1.5" long with an inside diameter of 1/2".  The edges are rounded slightly.  I have tried it once and I think it will work, although I have no idea if it will solve the problem.

My method will be to use suction on the side of the penis where there is an indentation.  I will do this following the VED when the penis is full of blood but not hard.  Creating suction over the indent MAY draw blood into that area and thus press against the indented tunica from the inside.  Manual stretching, traction stretching and stretch straps (which I use also) only give longitudinal stretching.  VEDs give some lateral stretching, but I don't think much.

With this method I think I can create a lot of pressure against the inside wall of the tunica pressing outward, laterally.  I must wait for my swelling and bruising to calm down following my 3rd cycle this past week.  I tried the VED last night, 48 hours after my last injection, but that was a big mistake.  Now I am very bruised and swollen and must leave it alone for a day or 2.

[Pfract]

And what about posting some photos for the folks to, see?  

[james1947]

Gringo

I also think that what you are proposing may work, but must to be very careful not to overpump.
For me VED worked very good for hourglass's and is because VED stretching laterally as he fills the penis with blood.

James  

[gringoviajero]

I'll try to take a shot with my phone later.  My camera was broken by a drunken gypsy.

i can't test the lateral vacuum until my swelling goes down.  Right now I'm a mess; penis and scrotum nearly all black.  This is the worst reaction yet.  He really got that Xiaflex in there good this time.  I'm hopeful this time will be the final.  Plus, I made it worse, I'm sure, but trying the VED only 48 hours after the injections.  I should have waited 3 or 4 days.  I drew a lot of fluid into the penis.  Big mistake.  It's extremely tender and sore now; red, purple, blue, black.  Yuck!

If the lateral vacuum idea works, it will be significant because many guys cannot solve that problem of waisting.