Personal Experience Of Xiaflex (And Verapamil)
The founder of www.curepeyronies.net has kindly allowed me to share his story with My Peyronie's readers.
His story is very interesting as he is one of the few that has personal experience of Xiaflex Peyronie's treatment because he participated in the Xiaflex trials.
But his story began long before that...
John (not his real name) developed Peyronie's in August 2006 when he was 58 years old. Like most of us, he had not heard of this condition before.
John is very proactive person and immediately sought doctors' advice. He saw three urologists and they all told him there was nothing they could do for now - they recommended to 'wait and see'. However, if his condition would become severe then surgery was an option once the disease had stabilized.
He was understandably surprised and discouraged by the lack of satisfactory treatment for Peyronie's disease. Surgery didn't sound good option to him due to the high risk involved, i.e. penile shortening and potential loss of functionality.
John decided not to 'wait and see' and started his Peyronie's treatment with Verapamil injections.
The Experience Of Verapamil Injections
John was advised to start his Verapamil treatment as early as possible and not wait until his condition had stabilized. He was told that the realistic outcome of Verapamil injections was to increase the odds of stabilization of his condition (hence starting the treatment while in the acute phase).
This is how John describes his experience of Verapamil injections (which consisted of 4 - 6 sessions each consisting of a number of injection pass through the plaque):
"My experience with Verapamil injections: The procedure is performed by a physician and a physician‘s assistant (PA). The base of the penis was swabbed with alcohol and for some reasons I found this very creepy. I couldn’t look, but felt a sharp, burning, stinging sensation when the Lidocain (numbing agent) was injected. After that it was not that bad, it’s more unpleasant and uncomfortable than painful. A number of injections were given deep into the penis which was not very pleasant, but bearable. Immediately after the PA applied pressure with his finger to stop any bruising or swelling and wrapped the penis tightly in gauze with instructions to remove it after one hour. After each treatment, the next one was less frightening. One aspect that was particularly unpleasant was to look at your penis after the treatment. My last treatment was a particularly aggressive treatment; my dick looked like a raspberry for a week" (curepeyronies.net/Verapramil.html)
Unfortunately, John condition worsened considerably after the Verapamil treatments. Whether this deterioration was due to the treatment or just a natural progression of the disease no one knows.
Still John says he would do it again, that is as long as there is no better non-surgical treatment option available. He though strongly emphasizes the importance of experienced physician to perform the treatment, someone that performs them on regular basis.
The decision to get the injections was based on his knowledge at the time. Now, he might try Trental (brand names for Pentoxifylline), coq10 (vitamin-like substance, also known as Coenzyme Q10), VED (penis vacuum pump) or stretching devices first.
The Experience Of Xiaflex Injections
John continued to seek treatment for his Peyronie's condition. He decided not to suffer in silence and started his website curepeyronies.net, following closely everything that was going on in the "world of Peyronie's disease".
He managed to get into the phase IIb Xiaflex study but was in the group that received placebo injections (the comparison group).
He was understandably disappointed when he found out but he was offered to participate in the open source clinical trial (everyone receiving Xiaflex injections) that ran essentially concurrently with the last phase III Xiaflex trial.
The treatment protocol consisted of up to 4 cycles (approximately 6 weeks apart), with 2 injections per cycle (1 – 3 days apart). Treatment would be stopped if the curvature reduced to less than 15 degrees.
Xiaflex injection is administered directly into the primary penile plaque. After each injection, pressure is applied to the injection site to minimize any swelling or bruising. Modeling was also part of John's treatment, which meant gentle stretching in the opposite direction of the deformity.
John had his first Xiaflex injection without anesthesia. There was some pain, discomfort and bruising as could be expected. Two days later, he returned for his second injection.
"As soon as the injection was given, I knew there was something very wrong. It didn't feel like the needle went into the right spot. Immediately, there was a great deal of burning sensation, stinging and bruising began" (curepeyronies.net/2013c.html)
John could not be given anything for the pain as it would violate the clinical trial protocol so after the required time he left and went back to his hotel. Over the next few hours his discomfort increased considerable and by 3 am he gave up and had the local police drive him to the emergency room. They couldn't do anything for him, except give him some painkillers and send him back to his urologist when he came to work the following morning.
There he was told that it was nothing to worry about even though his penis looked real bad. It should heal in couple of weeks.
To cut long story short it did not.
The bruising spread to the entire genital area and was blue/black at its worst. The penis contracted and was almost flush with the body. And while the bruising was healing, he noticed large lump on the top of the penis.
Ultrasound concluded that this was hematoma (solid swelling of clotted blood within the tissues). Hematoma may be classified as harmless bruising but in John’s case this collection of blood pressed against the penile nerve causing him to lose a great deal of sensation in the penis. It was so bad that for quite some time John could not feel if he was peeing or not.
John found a local urologist that agreed see him, as well as his regular follow up visits to the Xiaflex clinical trial urologist. He also saw local radiologist for periodic penile ultrasounds to follow the progress of the hematoma (surgery would be needed to drain the hematoma if it did not heal on its own).
Fortunately, the ultrasounds showed steady decrease in the size of the hematoma but it took about 15 months for it to be fully resolved. Unfortunately, John has still some loss of sensation as compared to when he first entered the clinical trial. In addition, when he is under stress the skin where the injections were administered becomes hard and leathery, making it hard to urinate.
Still the far biggest disappointment for John was going through all the injections and at best see no change in his condition.
So after his personal experience of Xiaflex, how does John feel about using Xiaflex injections to treat Peyronie's patients?
"If you conclude that an approximately 60% chance of moderate (and I stress moderate) curvature improvement is worth your time, effort, expense and risk, then you should be treated with Xiaflex. At this point, your responsibility is to make sure that the injection is given with the greatest accuracy and that you take steps to minimize the possibility of a serious adverse outcome" (curepeyronies.net/2013h.html)
John goes through his personal experience of Xiaflex injections in great detail on his website, to read the full story visit his website www.curepeyronies.net.
I thank John very much for allowing me to share his Peyronie's story with my readers and for his role in raising the Peyronie's awareness.
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