Greetings to all PDI and DCI Warriors,
Welcome to this February 2014 PD Institute newsletter. I trust all my friends are well. The days are getting a little longer, giving us the confidence we are slowly working toward Spring. This is important to remember when the lingering cold still covers much of the land.
Based on the large number of comments I received about the resumption of these newsletters, many of you have been missing this monthly flow of information and ideas about Peyronie’s disease and Dupuytren’s contracture natural treatment.
As I explained in January, while I am busy writing my next book I will revisit some newsletters during the next several months that were first published by PDI about five years ago. In this issue I will include part of an old newsletter in the 2nd section a bit further down, but first I want to present a recent email exchange that occurred several weeks ago, the day after the most recent newsletter was sent out.
That last newsletter contained a few comments about the need to very carefully select the best doctor possible to inject Xiaflex for PD or DC. In response I received an email from ABXXXXX, whose name is not going to be used, who participated in the Xiaflex drug trial at Baylor College of Medicine for his Peyronie’s disease. His opinions and comments are copied below along with my response to him.
For those of you who are part of our DCI readership, please simply apply the ideas expressed here about PD treatment and dosage to what you are doing for your DC. Certainly what is said about the importance of carefully selecting a doctor to inject Xiaflex into the shaft is just as important when dealing with Dupuytren’s contracture of the hand.
Because of the spam filters that we all use for our emails I had to edit the content for some of ABXXXX’s email. He naturally and appropriately uses the word P_ _ _ S in several of his email to me to discuss that part of this body. If I used that word as often as he does in a newsletter all of your SPAM filters would reject this newsletter to your junk folder. To avoid this problem, I have substituted the word SHAFT for this other word so that no one will have a problem receiving this issue of the newsletter.
Read this simple email exchange the difference in doctor’s skills and abilities between ABXXXX and me like the back-and-forth discussion between two people, in which one person occasionally interrupts the other to make an important point or offer an opinion to what is being said. To understand the flow of the email conversation, keep in mind that the text in black is from ABXXXXX and the text in red is from me.
Sent: Thursday, January 02, 2014 11:17 AM
To: Dr. Herazy
Subject: Re: January 1, 2014 PDI and DCI Newsletter
HOW RIGHT YOU ARE about the doctor choice in the use of Xiaflex. I was in the Xiaflex case study, done by Baylor College of Medicine, in Houston Texas, using the Xiaflex on PD. It was run by Dr. Mohite Kerra and Dr. Larry LXXXXX.
I had better luck having the case study’s PA (Physician Assistant) do my Xiaflex injections than I did with letting Dr. LXXXXX do an injection. The PA would keep the needle pushed right into the Peyronie’s plaque while dispensing the drug, while Dr. LXXXXXX allowed the flow of the drug to push the needle out of the plaque while dispensing it. Yes, technique is always important. As a patient I suppose it is natural to assume that the doctor taking care of you knows what he/she is doing, right? But, as you point out, the doctor you were assigned in this Xiaflex study did not have a good technique, resulting in some of the Xiaflex not going in the PD plaque but into your normal and healthy tissue. Lucky for you the Xiaflex did not come in contact with any or your primary blood vessels or nerve supporting structure. Some people are not so lucky and they develop terrible side effects because the normal tissue of the hand or shaft is irreversibly destroyed. When this destroyed tissue are blood vessel and nerve coverings or supporting structures that hold a body part together, the results can be terrible pain, loss of sensation, permanent swelling, reduced function, or other problems depending on the location of the damage. This is why I so strongly insist that anyone who contemplates any kind of surgery – and getting Xiaflex treatment is clearly a delicate surgical procedure that has critical consequences dependent upon how skillfully it is done – gets the most experienced and caring person possible to perform it. The results? Massive bruising, and hemoraging of the shaft tissue. It looked like I smashed my shaft with a sledge hammer on an anvil. There are two things that need to be mentioned here: #1. I just went to the Auxilium website, the manufacturer of Xiaflex, to double-check how they describe the potential side effects of their Xiaflex. They mention that “bruising” and “bleeding” can occur – nothing more than that. I guarantee you that if you read everything that has been written about what happens after a Xiaflex shot you will not find in the literature anything that remotely sounds like “It looked like I smashed my shaft with a sledge hammer on an anvil.” I have had people who had Xiaflex in the hand tell me about their experiences. One man reported that his hand looked like it had been “run over by an 18-wheeler truck, and then the truck backed up over it for good measure.” The information being put out by the drug company does not clearly explain what could happen as a result of a Xiaflex injection or the extent or frequency of the bad reactions that occur. I believe if people knew how serious the reactions can be, they would be less cavalier about getting the procedure. #2 While I am sure your shaft was greatly bruised, the temporary appearance is of course not the crux of the issue. The real issue is that a poorly delivered dose of collagenase (Xiaflex) can eat away normal tissue below the surface, ruin a man’s life, and destroy his marriage. By accidentally, carelessly or ineptly dissolving connective tissue related to blood vessels, nerves and supporting structures of the shaft or hand, a badly performed Xiaflex injection can take a patient from a bad place to a terrible place. The hand or the shaft can be destroyed. Based on what I am able to determine from my communications with men like you, and from those who have had Xiaflex injections for Dupuytren’s contracture, I am getting a strong impression that these stories of sloppy Xiaflex injections are a lot more common than the drug company wants it to be known. Time will tell how many of these stories eventually come to the surface. As you have said, your Physician Assistant did a better job of injecting the Xiaflex than your MD. But how could you possibly know your doctor did not know what he was doing until AFTER the problem developed? This is why people should be slow to submit to these kinds of procedures. Although the Xiaflex may show improvement on a fresh plaque of PD, I only showed a slight curvature improvement. My PD plaque is about 5 years old. I went from a 35/40 degree curvature to a 30 degree curvature, with no apparent change in the plaque (to the feel of it anyways). The person with PD or DC should keep in mind that being treated with Xiaflex is not just a matter of going in for a simple “shot.” Receiving Xiaflex is an in-office surgical procedure. The manufacturer of Xiaflex is quick to point out that this is a non-surgical technique, but is it really? When you read what has to be done, and the various cautions and steps that must be observed in order for a good outcome to occur, you begin to understand this is a complicated and delicate procedure – just like surgery. Not everyone can do it well; some people are far better at performing this technique than others. A wise person would choose the doctor who does the injection very carefully. And an even wiser person would try to avoid Xiaflex if at all possible. This is why so many people first try Alternative Medicine for at least several months to see if they can get their body to respond by increased natural healing. You mention that you did not respond very well because your PD is five years old. Keep in mind that I have been told by people who have 10-12 year old PD and DC that their problems show improvement when they closely follow an aggressive course of natural therapy.
Dr. Herazy, I know you are a very busy man, as is Dr. Kerra, but for the hundreds of thousands of PD sufferers in this country alone, I really think you two should get together and work on an aggressive treatment for PD using both of your brilliant minds. I do not know Dr. Kerra, but I am sure he is a wonderful doctor as you say. I do not think I belong in his category, but I appreciate your kind words. PD sufferers around the world would benefit, and THAT sir, is what you both are looking for, in reality. I strongly believe that a collaboration of your methods of treatment, in combination with Dr. Kerra’s treatment approach, would show the greatest improvements in PD seen in decades. PLEASE Dr. Herazy. contact Dr. Kerra (at Baylor college of medicine, Houston Texas) and at worse, prove me wrong. You two have a lot to discuss. Let Dr. Kerra know that the patient he met, and did the first Verapamill injections on, at the V.A. hospital in Houston TX. If you contact him, Dr. Kerra will remember me. As soon as things settle down around here I will contact him and introduce myself. TRH
OK, that is the email I wanted to share with you about Xiaflex. The next item will be a reprint of an earlier newsletter I thought should be a benefit to everyone.
Every now and then I will get a frantic email from someone who demands to know why he has not noticed any changes in his Peyronie’s disease or Dupuytren’s contracture.
The first question, and perhaps the most important one, I ask is this: What is the size, shape, density and surface texture of your scar? The usual response I get back is first silence, and then he will admit he does not know. I then will go on to explain that if you do not know the exact physical condition of the fibrous tissue at the start of treatment, and you did not know the exact physical condition of the fibrous tissue after a few weeks of self-treatment, how can you know for a fact that you have not made progress? Basically, the fellow is comparing nothing to nothing, and concluding that nothing has changed.
The tissue changes that take place in the hand or the shaft because of successful Alternative Medicine treatment can be very small at the beginning. Unless you have carefully studied the minute features of the hand cord and palm nodule, or the PD scar, you will miss the small changes in the size, shape, density and surface features that will occur during successful treatment.
What an absolute tragedy that a person quits successful DCI or PDI treatment that is actually making small changes in the fibrous tissue only because no effort was made to document the condition of the tissue at the start of care, or to frequently monitor for changes during treatment. It happens that progress can occur right under your nose – and go unnoticed – if you do not take the time to learn how to evaluate the physical condition of your problem. Read the DCI and PDI websites to learn how to properly evaluate your fibrous tissue so you can confidently identify improvement as soon as it occurs.
How silly it would be to go on a weight loss diet, but not take the time to get your beginning weight or beginning measurements at the start of the diet. You need to know what is going on at the start, so that you know if your diet is effective. If after a week or two of following a diet you know for a fact that you are not losing weight, then you have to change your diet in some way, or exercise more, so you will eventually lose weight. Success starts with knowing what is going on. It works the same way when you are trying to eliminate the dense fibrous tissue in the hand or shaft.
If DC or PD treatment does not help reduce your fibrous tissue then you must change your treatment plan. Using the same plan for weeks and weeks, and months and months, at a time is pointless and wasteful. Once a plan is underway I suggest that some element of the treatment plan be changed every 7-10 days until such time that the tissue begins to smaller, softer, more difficult to locate or changes are noted in the surface features of the tissue; the case of DC, a person might also notice that the palm nodule might also feel easier to move laterally like it is less tightly glued to the deeper tissue of the palm.
Further, I also get emails and calls from men who complain that they have not made enough progress to justify continuing with their treatment plan. My line of questioning goes like this:
1. What products and therapies are you using?
2. What is your dosage for each?
3. Honestly, how faithful are you to your plan; how often do you forget to do what you
are supposed to do?
As you can imagine I often learn that they have not been actually following their plan, but picking and choosing to do a few things that suit their fancy. These people who are getting no results usually use no more than 1-3 different therapies. I learn compliance for taking their products on a day to day basis is “not great”. I learn they have not got the book I wrote but were trying to do it all inexpensively through the information only on the website. Along the way I learn they have been using Viagra, they naturally eat all wrong for PD based on what is the suggested diet in “Peyronie’s Disease Handbook” and their MD has done yet another cystoscopic examination up the urethra in the last few months. They are their own worst enemy. Please think back how you have been using your therapies the last few weeks to see if some of these shortfalls might apply to you.
People are people. We forget. We get too busy to take care of ourselves. We make excuses why we do not do what we are supposed to do. Making a mistake or being weak is not the issue. We all make mistakes and we all get weak from time to time. What separates the winners from the losers is how they get back in control of themselves when they become weak to eventually do the right thing.
Please take your problem seriously, and take your treatment even more seriously. The more you do, the better your results should be.
This concludes our discussion for this issue of the newsletter. I hope everyone found this issue of the PDI Newsletter interesting and informative so you can do a better job of helping your own PD or DC condition.
Look again for another PD Institute Newsletter next month.
Stay focused to your plan and be successful. TRH