Xiaflex Doc concerns

[leftturn]

Greetings to all,

My first post to access this valuable resource.  I just finished the second shot of the second cycle (4th injection).  Though my doctor was involved in the FDA trials, I have grown concerned with his procedures, mostly due to some inconsistency.

Shot #1 - No marking (i.e. - X marks the plaque spot) as I have seen in the procedures from the company (AUXL).  Significant swelling and discoloration but, nominal pain.

Shot #2 - Again no marking but, no additional swelling, discoloration or pain.

Modeling #1 - He basically told me to pull until it hurts opposite of the bend for 90 seconds 3 reps 4 times a day and sent me home.  All the data says no sex mostly because it will hurt too much.  I had no pain that would prohibit sex which made me think something was not right.  I decided on a second cycle even after a measurement that showed no improvement.

Shot #3 - Prior to this injection, I stated I was concerned I had no improvement and he kinda quickly told me surgery was an option (no kidding).  Regardless I continued and this time he marked the injection site and I had little swelling or discoloration.  That night the "sleeping erections" were painful and significantly interfered with my sleep.  I actually took this as a positive sign since this is more of what I expected.  

Shot #4 - Today, it hurt like all hell and I immediately had significant swelling on one side.  He told me it will spread and is caused by the injection to create the erection not A POOLING OF THE MEDICINE.  His quick denial that it is not the xiaflex pooling is concerning.  Did he just miss the plaque.....again?

Now I am supposed to attend modeling in four days which I guess is going to be valuable only from an exam standpoint since I know what is supposed to happen next.  I guess I am losing confidence in the doc but, maybe this is a normal experience and I am just a 4 cycle type patient.  I am getting to the point that after cycle 2, if I have no improvement I live with it or have surgery.

Long story simple question: those of you who have gone through this: Would you continue with this doc?

[hope4all]

Thank you for posting leftturn. It seems some of the doctors administering Xiaflex are not following the manufacturer's explicit instructions, including my doctor, who doesn't do the modeling sessions at all.  I would suggest you soldier on with the injections since some patient don't start seeing results until the third round of shots. If Xiaflex is not a huge out-of-pocket cost to you I would especially go for all four cycles.  Surgery being the absolute LAST resort.  It is unsettling that your doctor mentioned surgery so freely after just one round. The current fee-for-service system we have here in the States rewards doctors for every service provided on a given day and not outcomes. I can guarantee you Surgery is a money maker for the doctor and the so called non-profit hospitals they often work in.

I was told by my doctor and have read here on the boards that those who bruised the most after the shots had better outcomes.  I didn't bruise at all on my very first shot but felt a burning session around or in the plaque area for several hours afterwards, and sometimes even a stabbing pain.  A whole different story when I went for the 2nd shot a few days later...major bruising and discomfort almost immediately. I took that as a good sign, even though I was mortified. Some doctors are even encouraging traction immediately following the shots because they feel the shot is at it's most effective for the first hour or two after injection. These doctors say their patients who did traction immediately after the shot and continued with traction throughout treatment did better than no traction at all.  Who really knows because traction was not part of the trials and it's not mentioned in the Xiaflex literature.  It's too early to know for sure what's the best course of treatment...we are all basically guinea pigs.  I wish  you well in your Xiaflex treatment!

[leftturn]

Hope,

Thanks for the quick response and the supportive message.  Regarding the traction immediately after injection, he was very specific in telling me to leave it alone because for the first 48-72 hours as there is a risk of penile rupture.....so that is pretty sobering.  Though losing some belief, he was a part of the clinical trials so I expect to continue with him for now.  I will report back after what I expect to be round 3.  

PS - I will be asking him about traction and adding a low dose Cialis regime (read about it on this forum) to increase the evening erections that can be modeled.

 

[hope4all]

Leftturn. Yes, Cialis is a good idea to increase the frequency and hardness of your nocturnal erections.  When it comes to traction after Xiaflex shots there seems to be differing opinions. The normal protocol calls for a 30 second stretch 3 times a day, which to me seems way too short.  I thought fracturing of the penis is a concern when you are erect, I didn't think it happens when you are flaccid, which is how traction is done, with a flaccid penis.  Don't know...

[james1947]

Auxilium have a training guide how to administer Xiaflex and what to do after the injections.
The file was posted by user of no names.
xiaflex dr training guide - Peyronies Society Forums
Proposing to all the members that are doing Xiaflex treatment to read it. It clarifies everything.

James