Xiaflex in the acute phase

[LFCE]

Dear members,

I'm sorry if this post overlaps another topic already discussed.

I got diagnosed Peyronies about 3 months ago while I started notify symptoms around 5 months ago. Curvature (leftward and upward) started around 2 months ago and it have worsen steadily up to 15-20º. Some weeks ago I went to a Peyronie's specialist in Spain who told me that we need to do the utmost to stop it. He prescribed me Pentox, Cialis and Traction (6-9 hours per day). I'm following it (with some difficulties for the traction but getting there). I got a second opinion from another uro who recommended me Xiaflex treatment for my case. The first one in a second visit suggested that Xiaflex could help as well to stop the progression, even more after noticing that the plaque was quite big.

I'm seriously considering to take my first shot in a few weeks. Given that I'm probably in the acute phase in a definitely not stable situation, I would like to know your opinon about it. Boths Uros seem highly specialised and with proven experience in Xiaflex/Xiapex treatment.

Thank you for this forum,

[Mending the Bend]

My advice is to begin Xiaflex treatment. Remember that it consists of 4 rounds of 2 shots each, and the entire treatment regimen can take around 6 months or more. If you are in the active phase, your plaque/curvature may be naturally evolving during this time, and the Xiaflex might both improve your existing curvature and prevent the formation of a worse curve.

When I started my Xiaflex, my curve wasn't stable - it had recently been getting worse after Verapamil injections. Xiaflex stopped the progression in its tracks and immediately starting improving my curve.

It's interesting that you mention a 15-20 degree curvature. Honestly that's a very mild curve, so your prognosis should be excellent - even if it stabilizes and doesn't worsen. In the US, Xiaflex prescriptions are supposed to be reserved for those with a curve of 30 degrees or greater. I think that's an arbitrary number, and I'm glad to hear that it isn't being strictly enforced.

Best of luck to you.  

[Glassglue]

My uro offered the option of xiaflex, once I had stabilized, even if the curvature was less than 30 degrees. However the kicker was that insurance wouldn't cover the cost if it was below that threshold.  

[Ive]

My uro in the UK said in his opinion the best future for Xiaflex was with people with Peyronies in the acute phase rather than stable.

He reckons the plaque is that much softer for Xiaflex to make a big difference and quicker.

Hope that's helpful.

[Mending the Bend]

Glassglue:

Are you saying that your doctor prescribed Xiaflex, but the insurer denied coverage because you were measured at less than 30 degrees? I'd have my doctor re-measure. We all know there is a margin of error, and if a few degrees makes the difference between coverage or not...best to err towards the higher number.

[Pfract]

LFCE: Saludos desde Portugal! Hello.. regarding peyronies and xiaflex i have no knowledge, but i am wondering if one of the doctors you are talking about is Dr. Eduardo Garcia Cruz? I think he is from Barcelona. I have seen some articles from him on Portuguese facebook posts, and "he seems" a very knowledgeable doctor willing to try new things...

[Glassglue]

Mtb, no he just mentioned as a possible future option regardless of how much bend I developed but warned of the probable issue with insurance if less than 30 degrees. I'm sure measurement error could end up factoring into that situation.  

[LFCE]

Mending the bend: Thank you very much for your advice, I think it deserves a try, at least it doesn't look like something that could worsen the situation or make another treatments ineligible.

Pfract: Olá amigo, Actually it was in Madrid where I found these doctors. If you want their contact I can give it to you.

Anyhow I'm waiting to get a little bit more of information, I'm working far from home and it's always challenging logistics.

Moreover Xiapex protocol I've been proposed differs a bit from the original one:

They proposed a first-single shot followed by just a modelling session. Then, after a month, they propose the standard two shots if necessary.

I would rather be suspicious but the doctor is Martinez-Salamanca who's the author of some articles regarding xiaflex and traction uses and he's a direct collaborator of the company that commercialices Xiapex in Europe. What do you think about that?

And to complete the picture, from what I've read here my case looks uncommon. From the ultrasound I got before I noticed any curve it looks that I have calcified 2 cm long cord running straight down from the glans. They didn't say nothing special about this regarging Xiapex treatment.

Best to all of you

[Pfract]

Thank you for the information! i was searching for that doctor on pubmed, and he has some articles out of wich i found an interesting one on using traction. http://www.andromedical.com/pdf/en/martinez-salamanca-jsm.pdf

I hope i can post the link...

[james1947]

Of course you can post the link pfract, it is to a research paper, not to a commercial site.

James

[Pfract]

Alright james. Have you by any chance looked at the paper? What are your impressions?

[james1947]

According to the results in the paper, traction may be one of the best tools for Peyronies.
On the forum also many people had good results with traction, some no results.

James

[hope4all]

I agree with those who believe treating Peyronies with Xiaflex in its earliest stages would be more beneficial and may even require fewer shots than stable plaques. Auxilium may even make more money if they decide to do another trial with acute suffers and find it works well. If the FDA approved it for stable and acute phase suffers the amount of potential patients would increase as well. Meaning those that settled into a curve of 29 degrees or less would likely qualify for Xiaflex as long as there was an Ultrasound to back it up, and difficulty during sex.  

They probably decided to do the trials with patients who had stable plaque because it's easier to measure results from a fixed starting point, a plaque that hasn't changed in several months. Acute phase plaques are very dynamic and can change from day to day.

[LFCE]

Hi to all again,

So it's been a little bit more than two weeks after my two first shots of Xiapex in Madrid. Although I was proposed originally one shot, they offered me as well two as the optimum protocol. It has not been an easy ride, side-effects were quite scary (Swelling, bruising and even some blood blisters), anyhow everything disappeared after a few days. In-office modelling was slightly more aggresive than standard protocol (bending the plaque on semi-erected state) and told to perform 3-4 times per day as well as stretching.

As per results, I'm quite satisfied right now. I didn't take any measurement yet but as an estimate I would say that I almost got rid of the dorsal bend (maybe still around 5-10º) and let's say an improvement on the leftward bent of around 30%. But for me, by now, the most rewarding result is that I feel quite comfortable with my erected penis as it was not the case before.

During the weeks prior to the treatment, I perceived a slightly worsening in my condition getting to around 25-30º upward and leftward. I'm around 6-7 months since I perceived the first symptoms and 3 since started to notice the curve. I assume I'm well in the acute phase.

It's interesting to note that I feel now like a bigger plaque covering around one third of my distal part of the shaft but I feel it irregular as if the drug has created cranks throughout it.

I keep my fingers crossed for this situation to stabilize. I keep on pentox, cialis and resume traction asap. (...what a pleasure was to stop traction for some weeks )

All the best to you, Thanks again for this great forum,

[james1947]

Encouraging reading about your results
Please be kind and post also on:
FORUM XIAFLEX RESULTS - Peyronies Society Forums

James