Conditions:

Peyronies Disease Client Feedback

27 january 2016

I have recently been a participant in a study to evaluate the safety and effectiveness of AA4500 in combination with a manual vacuum pump.

I was diagnosed with Peyronie's Disease about eleven years ago (with a 45 degree bend) and in the intervening time have tried various trearments and thereapies, including Tamoziden, Acetyl-L-Carnetine and have used a vacuum pump without any change to my condition. I was very pleased to be able to participate in the Xiaflex treatment study.

All the injections were expertly administered by Mr Raheem and although there was some bruising and swelling this quickly dimished. I used the vacuum pump exactly as directed by the protocol. The treatment has been successful for me with a fifty percent total reduction in curvature to just over 20 degrees.

I would highly receommend this treatment to anyone who has Peyronie's Disease as it seems to be the only non-surgical treatment that is effective.

2 December 2015

I would like to offer some feedback about my experience with the recent clinical trial/study (Protocol Number AUX-CC-807) concerning treatment for Peyronie’s disease and sponsored by Auxilium.

My physical and verbal interaction with Dr Raheem and Sara was excellent and they exercised professionalism in all of their examinations, advice and treatment. I only had one examination by Mr Ralph during the treatment cycle and his examination and advice was also professional and excellent. I have the impression that the team are world leaders in this speciality and it shows!

In spite of some pain experienced during injections, I am pleased with my results which show a considerable improvement with my condition. This, I am sure, is down to the Auxilium injections and the skills of Dr Raheem and Sara. I have no hesitation in recommending the treatment and Dr Raheem and I look forward my symptoms being reduced even further and as much as possible by continuing to be his patient.

December 2014

Prior to contracting PD, I enjoyed a healthy sex-life with my partner of 3½ years. It was an abiding and important part of our relationship and regular, enjoyable sex was a significant element of my self-perception.

I contracted PD in mid-2014. The first time my curvature was measured the angle was 65˚. The penis bends symmetrically, pointing towards the naval. I was told that the only treatment was surgery but that this had several possible negative outcomes.

With the arrival of the condition I found erections and sex of any kind uncomfortable. Despite the positive support of my partner, my confidence in my physical appearance when erect and sexual performance dwindled and we went through a period of much reduced physical intimacy. I simply didn't welcome an erection due to the discomfort and the way I felt about my appearance in that state. It was extremely dismaying. I felt that I had been robbed of an important, pleasurable part of my life.

I was accepted onto the Xiapex Collegenase clinical trial being run by Mr Ralph and Mr Rahim late in 2014.

After four phases of the treatment the angle of curvature has been reduced to 40˚ and the change in my relationship with sex, erections and my sense of self in that context has been marked and positive.

Firstly, there is no discomfort when having an erection or during intercourse. Though there must be some minor accommodation with regards to position, sex has been restored to its status as an enjoyable and regular part of the relationship. From feeling that I appeared strange and that something abnormal has happened to me, PD itself has been normalised and, though I would rather I didn't have the condition, I feel I could more or less happily live with this reduced degree of curvature.

With regard to the condition, the treatment has definitely taken me from the negative side of a threshold to the positive. I feel that sex has been restored to its former position in my life now that the initial, more severe manifestation of PD has been alleviated. And I certainly don't feel that surgery is required.

March 2013

I became first aware of the problem in June 2013. After visit to doctor and several months being referred to various hospitals, I was referred to UCH in Nov 2012. I starte with the vacuum therapy but at review in February discontinued it as having no apparent effect.

I was referred to the clinical trial but had to wait for several months to be 3 months clear of the previous vacuum therapy. Started the trial on 19 June 2015 and was put on the “modelling” group.

Haven’t experienced any painful swelling with the injections and so have not missed any. Progress has been gratifyingly steady and substantial; a reduction from 75 degrees to 20 degrees. As a result am now able to have intercourse without the previous difficulty. This is gratifying; my relationship was beginning to suffer before.

The downside of the treatments (a) the number of visits (but since I am 30 minutes journey from the clinic and am retired it hasn’t been a serious problem); (b) scheduling visits around holidays (c) the somewhat painful injection; (d) the tedious business of the vacuum therapy – the effectiveness of which I have doubts.
But bearing mind the result, it has certainly been worth it.

The people involved have always been pleasant, efficient and helpful.

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