Q1. Please tell us a little bit about your background and your experience of treating patients with Peyronie’s Disease.
I have been treating patients with Peyronie’s disease since the opening of my private practice in 1994 and I participated in the initial studies that led to Xiaflex being FDA approved for its treatment. As a result, I was one of the earliest adopters of intralesional Xiaflex injections for Peyronie’s disease.
My experience in treating patients with Peyronie’s disease has led me to believe that there may be a strong genetic component connecting Peyronie’s disease and other fibrotic disorders, such as: Dupuytren’s Contracture, Frozen Shoulder, and Ledderhose’s disease. I am currently working with Regeneron, one of the country’s largest and most creative biomedical companies, conducting a clinical study on the genetics of these four diseases. We are hoping to analyze DNA samples of individuals and family groupings suffering from these disorders. We anticipate that the data we collect will open a path to the development of diagnostic and treatment tools for these disorders.
50-100 per year.
We see men at all stages of the disease with different severities and degrees of curvature. Our treatment plan varies greatly depending on the results of our initial assessment and diagnosis.
I believe that there is a genetic component to the development of the disease. As I mentioned earlier, our clinical study is focused on determining that component. Additionally, men who are more sexually active or more aggressive in their sexual activity are at a higher risk of a trauma event, which could lead to Peyronie’s disease.
Early detection is critical in developing a treatment plan that will get patients the best results and lower the chance that they will require surgical intervention. Prior to the development of non-surgical treatments, the protocol was to wait for disease progression to stabilize and then perform corrective surgery.
Now we have treatment options that can be used in the early stages of disease and rather than patients immediately undergoing surgery once the disease has stabilized, Xiaflex injections are an alternative approach.
Early treatment is also essential as it has potential to slow, halt, or even correct the progression of curvature. Once the disease has stabilized, patients who have undergone early treatment will have a less severe curvature than those who did not get treatment. This is important, as a smaller curvature will require less aggressive treatment when the disease has stabilized.
Initial treatment options include: penile molding, penile traction devices, and orally administered Pentoxifylline. Penile modeling consists of straightening and strengthening the penis through manual stretching. The traction device we use is the PeniMaster Pro, which should be used for at least three hours daily, (although 8-12 hours with breaks every three hours is an option for those who are able to do so.) These exercises combined with the plaque reducing effects of Pentoxifylline, are used as an early stage approach to help slow the progression of the disease.
Once the disease has stabilized, we recommend Xiaflex treatment to further reduce the curvature. In order to get optimal results, we have our patients continue with a regimen of penile remodeling and traction during their Xiaflex treatment.
The final measure for treatment is surgical intervention. If a patient requires surgery, I refer them to a colleague who is an excellent urological reconstructive surgeon. It is important for our patients to realize that Peyronie’s disease isn’t the end of their sex life; we can always get the penis straight.
We want men to reach a point where they are not only happy with the aesthetics and feel of their penis, but also feel that the curvature is not limiting their sexual function.
For our patients with active-stage Peyronie’s, we recommend Pentoxifylline because of its ability to reduce the calcium burden in plaque.
Our experience with Xiaflex injections has been great and to date our results have exceeded published results. We also find that our patients have much better results when they use the penile modeling protocol during Xiaflex treatment.
It is important to note that administering Xiaflex most effectively requires significant experience. Seeing a specialist who can determine the optimal injection location for each individual case will result in the most rapid rate of improvement.
I have used Verapamil in the past. We have had some moderate responses from treatment, but it was unclear how much of the effect was due to the medication rather than the penile modeling procedures.
We use the PeniMaster Pro traction device as well as a vacuum erection device. We believe them to be a good, non-invasive option for reducing curvature, in either the active or stable phase of disease. We find that men have the best results in the stable phase when these devices are used in conjunction with Xiaflex.
Before we treat a patient for Peyronie’s disease, we always assess their erectile function. If a man’s erectile dysfunction is severe enough to warrant surgical placement of a prosthesis, we recommend (as long as he is in the stable phase) that he undergoes surgical intervention of the Peyronie’s at the same time. If the ED is not this severe, we offer PDE-5 inhibitors, intracavernosal injections, and low intensity shock wave therapy.
We are currently using shock wave therapy to treat erectile dysfunction with excellent results and are considering using shock wave therapy for Peyronie’s disease as well. Research suggests that shock wave therapy is effective in the early stages of Peyronie’s disease, as it can drastically reduce penile pain, allowing men to maintain intimacy in their relationship during the disease progression. Shock wave therapy also has the potential to stabilize, slow, or correct the progression of curvature that occurs in the active phase of disease.
From the studies we have seen, radiation therapy does not appear to be efficacious in the treatment of Peyronie’s disease.
For men who self-diagnose their Peyronie’s Disease, or see their physician and are diagnosed, the most effective course of action is to seek treatment from a urologist specializing in Peyronie’s Disease as soon as possible. Virtually any physician can diagnose PD, as can most patients themselves. However, only a specialist can review all available options at each phase of the disease and help decide the right treatment for any individual case.
A specialist should offer you the options of penile extenders and Xiaflex. They should have the ability, time, and expertise, to introduce various treatment options, and teach you to use them. If they cannot provide these basics, then you owe it to yourself to find a urologist who can.
Finding a specialist in a timely manner is the best way to intervene with disease progression. You should go to a specialist as soon as you know you have Peyronie’s disease, even if a non-specialist has told you to wait it out.
It is critical to assure men that, with proper treatment, they will ultimately have a fully functioning, “normal looking” penis. Treatment may be time consuming, uncomfortable, embarrassing, and frustrating, but, if they stick with it, they will get the results that they want.
It’s also very important that men with partners remain sexually active with them in some way as the disease progresses through the active phase. Having some limitation on positions for penetrative sex, is better than having no penetrative sex. It is also important to remember that penetrative sex is only one aspect of sexual intimacy and there are other ways to have sex: orally, manually and with every other part of your body. You are only limited by your imagination. It is vital for you, your partner, and your relationship, to maintain sexual intimacy as you proceed with your treatment for Peyronie’s disease.
We men are (to various degrees) obsessed not only with how our penis functions, but also with how it looks to us. Curves or indentations may bother us. For our partners, the visual aspect is often less important than the functional, which, in turn, is also much less important than sexual intimacy. In most cases, the appearance of your penis is a very small component of your partner’s attraction to you.
Partners of men with Peyronie’s disease should reassure them that the look of the penis is not significant to them and that they still want to be intimate. They should encourage their partner to seek treatment from appropriate physicians and allow them a comfortable space to talk about their concerns and the treatment. They should also remind them that at the end of the treatment process, it is likely they will have a straight and functioning penis again.
As I mentioned above, I am currently conducting a clinical study to sequence a man’s DNA, in search of a genetic component to Peyronie’s Disease and related fibrotic disorders. We are collaborating with Regeneron, one of the world’s leading experts in DNA sequencing and drug development.
If we are able to determine a specific gene that either causes or increases the occurrences of these diseases, it may open up avenues for new research into diagnosis and more effective treatment options; either preventative or curative. Screening for these genes would allow us to see who is at risk of developing a fibrotic disorder, allowing the use of preventative treatment options. It is difficult to say if there will ever be a cure. Despite this, determining the root cause of the disease is the first step to finding a way to prevent, or even reverse, the effects of the disease.
Additionally, I think that pressure wave therapy (Low Intensity-Extracorporeal Shock Wave Treatment) has the potential to be an important treatment option for Peyronie’s disease, particularly in the treatment of early PD. The treatment shows promise in managing current pain and curvature, as well as limiting the progression of the disease.