Archived Transcript

Early Stage Treatment of Peyronie's Disease: Options, Expectations, and Likely Outcomes – A Live Chat with Dr. Culley Carson

April 16, 2008

This is a full transcript of Dr. Carson's live chat. This resource is provided for your reference without any editing other than correction of typographical errors. Menshealthpd.com is not responsible for the content of this chat transcript.

Chat_Moderator: My name is Walter Ryan, I'm with Cook Medical, and I will be moderating our discussion this evening. Prior to starting, I would like to cover a few guidelines and “house-keeping” items as we proceed through the chat.

Chat_Moderator: Please feel free to be candid with your questions, the intent is to provide an open forum for you the guest. The information will not be used or shared for any type of marketing purposes.

Chat_Moderator: Questions will be screened prior to delivery to Dr. Carson to ensure that we remain focused on the topic of the evening.

Chat_Moderator: Questions and responses will be posted in the form of a transcript following this chat, please refrain from submitting personal details with your question.

Chat_Moderator: Due to limited time, we may not get to all of your questions. However, we will follow up with a posting in the forum in an effort to answer all questions.

Chat_Moderator: Dr. Carson will post responses once a week for the next four weeks, so please feel free to follow up on any questions or responses that you would like to discuss in more detail.

Chat_Moderator: NEVEr wory about speling or grammer – I don't.

Chat_Moderator: Once again, welcome. Dr. Carson is now prepared to take your questions.

dottie: What causes Peyronie's Disease?

Dr_Carson: The cause of PD is not known but appears to be related to penile trauma during coitus.

Miguel: Hello?

Dr_Carson: Hello Miguel!

Richard: Are there any clinical trials available for Peyronie's patients?

Dr_Carson: There is a trial that will begin in the next several months evaluating the effects of injectable collagenase in resolving plaque and curvature. The trial is sponsored by Auxillium and we will be part of the trial sites.

Miguel: how do i know if i have Peyronie's or just a normal "bend"? are there early signs to look out for?

Dr_Carson: A good physical exam by a urologist interested in PD is a good place to start. Normal bend almost always begins in childhood while PD begins later usually after age 40.

Richard: Are there any Boston investigators?

Dr_Carson: I am not sure but you might want to look at the Auxillium website and we will post it in the forum later.

ken1024: Are there any verifiable results from treatments other than surgery or injections?

Dr_Carson: There is a controlled study of POTABA from Germany that showed no statistical difference from placebo. There are several studies of shock wave treatment that also show no significant improvement.

Richard: Thank you. I tried 9 months of topical Verapmil with absolutely NO impact!

Dr_Carson: I am not surprised as the Verapamil does not get into the plaque from the topical application.

larry: I am in the early stage of PD- 4 months. Is there anything that I should be doing but waiting? All my doctor suggested was Vitamin E. There are all kinds of treatments being suggested on the internet- Vitamin E topical with DMSO, enzymes, etc.

Dr_Carson: The earlier treatment is started the better the effect. While vitamin E is often used, the data don't support a strong effect. Better oral treatment is pentoxyfylline (Trental).

Bill1: I have read that PD sometimes goes away after a while. Is this so if plaque has developed and there is curvature?

Dr_Carson: The data show that fewer than 20% resolve spontaneously. About 1/4 improve. These are with continued plaque. The most important aspect is function!!

Bert: I am in Portugal,

Bert: I'm 59 years old also suffering of this Peyronie's disease. My doctor said no cure ... Please help me

Dr_Carson: While PD is not curable, there are a variety of treatment options for all stages of PD.

Jay: I have been undergoing radiation and seed implants for prostate cancer over past year. I never had any signs of this until about 4 months after completing treatments. There seems to be a direct cause-and-effect in my case. Do you know of this in other cases following prostate cancer treatment?

Dr_Carson: There are cases of PD with all treatments for prostate cancer.

Richard: My Urologist - in an academic medical center - said there was no reasonable treatment and I had to just learn to live with it.

Dr_Carson: This is not true. There are many effective treatments. While the condition is not curable, patients can have return to normal sexual function.

Beantown_Bill: What is the rate of PD in US?

Dr_Carson: PD occurs in 8-12% of men over age 40 in the USA.

Dr_Carson:

Jay, let me expand on the prostate cancer issue. There are publications that show radical prostatectomy associated with PD. There are also several case reports of men with PD after both external beam and seeds for radiation therapy.

jlee: has there been any evidence of pd being linked to be diabetic?

Dr_Carson: PD occurs in diabetics but there does not seem to be a higher incidence in diabetic men

herm: will rubbing in vitamin E directly into the scar tissue/plaque can that break it up

Dr_Carson: No. Anything applied to the skin has many layers to pass to get to the plaque. While topical vitamin E has been associated with improved skin scars, it does not get to the PD.

jlee: how do you find a urologist that has really good PD experience?

Dr_Carson: The best resource is the SMSNA. The physician finder on this website may help also. I would also ask the office of the urologist when making an appointment.

David: Are there any lasting negative side effects from Verapamil injections?

Dr_Carson: There are few negative effects of verapamil. The major downside is that it does not always help the PD. After treatment patients may have some soreness or bruising that is usually self limiting.

ken1024: Can my urologist in CT participate in the Auxillum trial and how? If not, how could I participate?

Dr_Carson: I really have no control of the urologists chosen. I would ask Auxillium who is included in the Connecticut area.

Web_Submission: The site says steroid injections may be harmful. Why are they harmful?

Dr_Carson: Steroids were used widely in the 1980's but change the normal tissues and don't decrease the scar tissue well. There is great difficulty with surgical dissection if surgery is chosen later in the course of the disease.

herm: what about verapamil injections, topical gel or neprinol oral

Dr_Carson: Of those treatments, Verapamil injection is the one most studied and most likely to improve the plaque.

Chat_Moderator: For those who have just joined, my name is Walter Ryan, I'm with Cook Medical, and I am moderating our discussion this evening. Please feel free to be candid with your questions, the intent is to provide an open forum for you the guest. The information will not be used or shared for any type of marketing purposes.

Chat_Moderator: Questions will be screened prior to delivery to Dr. Carson to ensure that we remain focused on the topic of the evening.

Chat_Moderator: You can click the transcript button at any time to see what you missed.

Jay: If PD is a result of plaque build-up, where is the plaque occurring? In the arteries, veins or in some other section of the penis?

Dr_Carson: PD plaque is in the lining of the erectile body in a layer called the tunica albuginea. PD plaque is in no way related to arterial plaque, cholesterol or vascular disease.

Richard: The fact that most Urologists are telling patients that there are no treatment options are almost as bad as having the disease. My Urologist delayed treatment until I pushed for it.

Dr_Carson: That's one of the advantages of the internet and these websites.

Richard: Thank you Dr. Carson.

Dr_Carson: You are welcome!

jlee: will we be able to get a copy of the transcript later for reading?

Chat_Moderator: Yes, please visit the forum following the chat. We will also take follow up questions for one month

herm: What do you suggest as treatment in the early stages of PD to break up plaque

Dr_Carson: The best way to start is the least invasive. I usually start with pentoxyfylline orally.

nca: As for ED and PD, it seems there is more focus on treatment rather than cause. is that because the cause is usually unknown

Dr_Carson: The cause is thought to be trauma in patients that have scar formation. There is some research ongoing to clarify the actual cause.

Prior_Submission: Why does it take so long for medications to do anything?

Dr_Carson: PD is scar tissue and is gradual in onset. Thus, the resolution or improvement is also slow. Just like any scar tissue changes are gradual.

Jay: You mentioned Trental. I recall taking Trental during radiation to improve pelvic blood flow but how would that help PD if blood vessels are not involved?

Dr_Carson: The data from the lab show that there is a significant decrease in penile fibrosis with Trental. It not only increases blood flow but also decreases fibrosis formation.

ken1024: I've had PD for over 2 yrs. My urologist suggested wait & see. In the meantime, I've taken Vit. E, Verapamil, neprinol, etc. to no avail. What do I do next?

Dr_Carson: At 2 years, treatment should be focused on function. If you have good erections and the curve is minimal. no treatment is necessary. If function is poor, either a penis straightening procedure or penile implant are effective.

jlee: so pentoxyfylline requires a prescripton. I wonder why my urologist did not suggest this? is it expensive?

Dr_Carson: Pentoxyphylline is generic and not terribly expensive. It is a relatively new concept for the oral treatment of PD.

Chat_Moderator: Thank you for your participation to this point. We have 30 minutes left with Dr. Carson, but will be taking a 5 minute break to catch up on questions and let Dr. Carson stretch his legs. Thank you for your patience during this break.

herm: What does pentoxyfylline actually do

Dr_Carson: Good question, the mechanism of action is not well known but there is a reduction in fibrosis and fibrotic tissue.

jlee: is trental over the counter?

Dr_Carson: This is a prescription medication.

Miguel: Um, can i get Peyronie's from masturbating?

Dr_Carson: Any penile trauma can be a cause of PD.

Chat_Moderator: We are coming back from our break, thank you for your patience.

Chat_Moderator: For those who have just joined, my name is Walter Ryan, I'm with Cook Medical, and I am moderating our discussion this evening. Please feel free to be candid with your questions, the intent is to provide an open forum for you the guest. The information will not be used or shared for any type of marketing purposes.

Chat_Moderator: Questions will be screened prior to delivery to Dr. Carson to ensure that we remain focused on the topic of the evening.

Chat_Moderator: You can click the transcript button at any time to see what you missed.

Richard: I am one year into it ... 15% Verapamil for the 9 months since diagnosis. I just saw another urologist who put me on Trental 3x day at 400 mg.

Dr_Carson: Trental 3/day is the right dose. At 1 year this approach may still be helpful.

Web_Submission: How soon after beginning treatment can I expect to see results?

Dr_Carson: Time to improvement is variable depending upon how soon after onset that treatment is begun and the severity of the disease. If it is long past onset or if there is calcification, treatment will be slow or minimal.

Richard: Can people travel to a study site out of state or does follow-up prohibit doing that?

Dr_Carson: Men can certainly travel to study sites and many will travel to participate!

herm: Instead of doing nothing what should you be doing (wonder what

Richard did)

Dr_Carson: Oral treatment or injectables are the best way to begin and may help the condition and reduce the need for surgery.

Prior_Submission: How does Verapamil work?

Dr_Carson: The exact mechanism is not well understood but it appears to change the type of collegen in the scar tissue to a more elastic type. Verapamil only works well as an injection and oral and topical are not effective.

Jay: Of all the medications you mentioned such as Trental and Verapamil, in what order would you recommend that they be tried?

Dr_Carson: I would start with the oral Trental and move on to injectable if there is poor response.

herm: What about a collar affect or indentation at the base of the shaft - with little or no curve - is the treatment the same

Dr_Carson: The treatment is the same. This is called "hour glass deformity" and often is more functionally a problem than curvature.

fred: Len If surgery is indicated , what kind of surgery is done? How much does it cost, and does insurance cover it?

Dr_Carson: The surgery depends upon the PD. The options are straightening procedures or penile implants. Straightening with a plaque incision and grafting is the most common procedure that we do. Insurance coverage is variable and should be discussed with your carrier.

Prior_Submission: Why do I have to wait for surgery?

Dr_Carson: Waiting until the PD is stable is a good idea as it might progress or resolve. It is important to wait until the PD is stable which usually takes 12 to 18 months,

herm: I was just diagnosed 2 weeks ago. How soon should I start taking some sort of the treatments suggested

Dr_Carson: As soon as possible. The earlier you begin treatment, the more likely conservative treatment will be effective.

Miguel: If I am in early PD, can I feel the plaque? I really don't want to bring it up with my dr if I don't have to

Dr_Carson: The plaque is not always "feelable" and may only be felt by a knowledgeable physician. I think it is important to discuss it with your doctor.

Prior_Submission: What therapies do you recommend?

Dr_Carson: There are many therapies. Early mild PD can be treated expectantly or with pentoxyphylline. Later, injections with Verapamil or interferon are used and finally, surgery can be used for the patient with functional problems and stable PD.

herm: The trauma occurred about a month ago, the hour glass condition just showed up. Is it possible this will go away on its own?

Dr_Carson: It is possible but treatment is a more likely path to this getting better. The sooner the better.

Miguel: ok thanks

Dr_Carson: Your welcome, have a nice evening.

Randall: There has been some discussion about cholesterol drugs causing PD. What is your opinion?

Dr_Carson: There are no data that suggest statins or other cholesterol lowering drugs being associated with PD. Many men with hypertension and its treatment can have PD probably because their erections are not as good as they once were and may be more likely to be injured during sex

Chat_Moderator: You guys have been great. Dr. Carson is answering your questions as quickly as he can type, so we're sorry if it is taking a while to get to yours. Please keep the questions coming.

ken1024: Are you suggesting that oral Trental at 24 months of stable PD may not be effective?

Dr_Carson: At 24 months, it is less likely to be effective. Usually at 2 or more years, the plaque and erectile problems rarely change.

herm: I understand the pain usually disapates. How long after the initial trauma

Dr_Carson: The pain is usually the most reliable symptom to resolve. It usually decreases at about 4 months after onset. Time is the best treatment for the pain.

Bill1: I have read that taking an anti inflammatory drug will help. Is that so? If so at what stages should they be taken?

Dr_Carson: Anti inflammatory drugs may help in the earliest stages. In fact the Trental and other agents used have some anti inflammatory effects. This effect is best at the very earliest stages

Prior_Submission: My doctor recommended taking vitamin E pills and rubbing vitamin E on the site. Why both?

Dr_Carson: Vitamin E is often used for PD, but there are few data supporting its use. Neither systemic nor topical is very effective.

Jay: Are there side effects to the use of Trental (such as blood thinning)?

Dr_Carson: The side effects are few although some patients have flushing and can occasionally have blood pressure drops.

Randall: Once inches and girth are lost, there is no gaining that back. Correct?

Dr_Carson: Loss of length and girth are huge problems for many patients. While there are some methods for a small increase in length, length will not be restored despite the treatment chosen.

Bill1: Are Anti-inflammatory drugs effective after 10 months?

Dr_Carson: It is certainly possible as the inflammatory part is still in action for up to 2 years.

Prior_Submission: I have some symptoms, but am still unsure whether I actually have Peyronie's. Can you talk about the symptoms that are most indicative of the disease?

Dr_Carson: Symptoms include pain with erection, penile curvature with erection, denting of the penile shaft (hour glass deformity), penile shortening and ED.

Maxx: Hello,...what do you make of the evidence that cAMP reduces Beta 1 fibroblasts?

Dr_Carson: cAMP appears to have an effect on fibrosis in general and penile fibrosis specifically. The research in PD is yet in its infancy. We need to do more basic research to elucidate the connections!

Randall: Are there any current clinical trials taking place and are they drug related?

Dr_Carson: Auxillium has a trial of collagenase (a drug) by injection. The trial will begin in the next few months.

ken1024: What are the Auxillium trials testing?

Dr_Carson: Injectable collagenase

herm: Isn't breaking up the scar tissue important and wouldn't rubbing in vitamin E directly to the spot helpful like you would for scar tissue on a tendon injury and to bring blood to the area to help with the healing process

Dr_Carson: If you could get the agent Vitamin E, etc directly onto the plaque, it might, but topical agents don't get thru all layers of tissue into the plaque.

Chat_Moderator: We will be answering the remaining few questions in the queue, please feel free to continue to post questions and visit the Forum for a response.

Jay: What is the best source to use for finding a local urologist who is experienced in dealing with PD?

Dr_Carson: See the previous comment to jlee. The SMSNA website or this website, when we have finished the directory, are good resources. There is a website for the American Peyronie's Disease Assoc (APDA) can also help.

ken1024: What is cAMP?

Dr_Carson: cyclic adenosine monophosphate.

Maxx: What are some drugs that raise cAMP to help me stop the fibrosis from occurring?

Dr_Carson: The agents are not well known and are still in the laboratory.

Chat_Moderator: Thanks everyone for all of your questions. This has been a great discussion that we will continue in the forum. Dr. Carson will be posting responses once a week for the next 4 weeks, and we have other events planned in the months to come. We hope that you come back to menshealthpd.com for continued support.

Dr_Carson: Thank you all for being on the site and for the very astute questions!!