PRURIGO TREATMENTS --Possible Causes

The cause of Prurigo Nodularis is unknown. Here is a list of some of the theories about how this disease got started in our bodies.

The suggestions listed here come from the wonderful message board
at this link:
   Prurigo Nodularis Support

 

Greetings, fellow PN Sufferers. I am posting here what I believe are the current theories about what is the true cause of PN. This is by no means a complete list, and I am not offering any conclusions here. My purpose in doing this is it helps me to stay organized and gives me some paths to explore as I fight against this belligerent disease. Please feel free to add anything and everything that you consider to be of value to this list.

===Skin
This is the most obvious suspect, that something bad has happened to our skin, so we treat it with lotions, ointments, creams, injections and Ultra Violet light. But as we all so sadly know, none of us has gotten 100% better through this approach alone. We do get some relief, but we have not been cured by treating just the skin alone.

===Nerves
There seems to be some support for this, since the sensation of itchiness is caused by the nerves sending an exaggerated signal to the brain. That is why Zostrix or Capsaicin is prescribed; to deplete something called “Substance P” that the nerves use to send their itchiness signal.

===Virus or Bacteria
Some of our sufferers think our disease is caused by a virus or bacteria, since they report having high levels of H. Pylori bacteria. Unfortunately others of us have been tested for little or none of this bacteria at all. There may very well be a virus at work in our bodies, but at this point this is unknown.

===Insect Bite
(09-03-03) There is some evidence that PN started from an insect bite. Some of the posts here are from people who clearly identified they were bitten by mosquitoes, and then within a couple weeks, they had PN. I find this to be pretty convincing evidence, especially concerning mosquitoes. In my case I got PN in January 2000, but I can't pinpoint any insect bite. However, we definitely have fleas and mosquitoes at our house, and it would only take one bite of a disease carrying insect to infect me. Unfortunately, from the discussions I have read on this board, most of us can't point so clearly to being bitten by an insect, so we don't know this for sure. If it does prove to be true that insect bites are the source, then we can know for sure that a virus or bacteria is the root cause of our affliction

===Diet
Some of us report particular foods or drinks that make us worse. Flare-ups have been reported from alcohol and shellfish. Some of us suspect yeast and wheat products, so we go on the Candida diet.

===Internal Organs
Sometimes internal organs become diseased and they expel toxins through the skin. Some of us suspect that a diseased liver is the actual source of the rashes and bumps that appears on our skin. Therefore, treating the skin is a losing battle; instead, we need to be treating our liver with proper medications.

===Immune System
Very itchy skin is one of the symptoms of those who have weakened immune systems, such as HIV sufferers. To get better, then, we would need to substantially boost up our immune systems. As a result, many of us are taking dietary supplements or getting intravenous treatments designed to strengthen our immune systems.

(09-03-03) One of our PN members reported here that she got MUCH BETTER ironically when she got sick! In fact the improvement was so dramatic, she was able to wear shorts and a tank top within one or two days later. Wow! There was quite a bit of discussion on this board about this, and the convincing theory is that her getting sick actually weakened her normally overly agressive autoimmune system. Since her immune system had to go off and fight against the sickness, it left her PN bumps alone, causing her to have literally overnight improvement in her PN condition.

In addition, Jan has been singing the praises of Protopic ointment, and the main purpose of that medicine is to surpress the autoimmune response. Jan has seen wonderful improvement this past year using it, and I have also seen great improvement in myself, even though I only just started using it a week ago. As a result of these incidents, my vote is that PN is probably an autoimmune disease.

(May 12, 2003) The Mexico clinic That Tanya went to focuses it's treatment on doing just this, so this is obviously an area that most of us might want to focus on in our treatment plans.

===Environment & Toxins
Some of us are exploring the idea that our bodies have become toxic through such things as the mercury in our metal fillings in our teeth or a build-up of lead in our systems. Or it could be chlorine in our drinking water, or preservatives in our modern processed foods, or pollutants that we are breathing in our industrialized air that is doing this to us. However, the people who live around us aren't getting this disease, so environmental factors alone is not the likely cause.

===Psychosomatic
After reading through all the postings here on this board, it appears to me that NONE of us PN sufferers think we are causing this disease and doing it to ourselves. However, it appears that MANY dermatologists think our disease is just psychosomatic; that we are causing our own disease. Many of us have been scolded and told that “If you don’t scratch, then you will get well.” We have been told the reason we have bumps on our bodies is because we scratched FIRST, and thereby we irritated our skin, which then caused the terrible bumps to appear. Quite a few of us have had our derms refer us to psychiatrists to treat the “mental disorder” which they consider to be the true source of our disease. But don’t you believe it! Not one person on this board has posted that they were cured by seeing a psychiatrist.

===Stress
Some of us have been told that stress is the cause of our disease. However, this appears to be a copout on the part of frustrated derms. I think it is safe to say that EVERY ONE of us now has a substantial amount of stress in our lives from having to cope with this awful disease. However, there are tens of millions of stressed out Americans, and they don’t have this disease. And in my own life I got this disease at a time when my stress was quite low. No doubt past stress in our lives weakened some of our body parts or immune system, which then allowed this disease to get a foothold, but I just don’t buy it that stress ALONE is the source of our itchy bumps.

===Parasites
(May 12, 2003) I added this category because my first derm tested me for this, so apparently miniscule parasites can produce some of the symptoms of itchiness and bumps that we all suffer from. What he had me do was smear an anointment all over my body from feet up to my neck for one evening. Nothing came of it, so he didn't go any further down this path. It's probably a huge longshot that this is the source of PN, but I mention it here so nothing gets overlooked in a search for a cure.

===Scratching
(Aug 03, 2003) Many of us PN sufferers have been told by our derms that we are CAUSING our own disease by our scratching. I say Rubbish! You can read a pretty extensive discussion about scratching from our varied experiences under the thread "Dermatology Conference". From what others have said here and my own personal experience, I strongly believe that the intense itchiness comes first, which means something went wrong in our bodies long before the scratching occurs.

For example, if you stop scratching, your bumps will NOT just go away. Also, Jan posted how he had sores develop on his back where he couldn't even reach them. Another member here did an experiment of scratching part of her skin where she did NOT have PN, and guess what --no new bumps appeared there! In addition, years ago I would be attacked by fleas from our cats, and even though I scratched furiously, I NEVER developed the persistent PN bumps that are now scattered over most of my body.

===Vaccinations
(Sept 09, 2003) There is a growing controversy in the medical community that vaccinations are actually more harmful than good. Some of the ingredients in a vaccination shot are pretty toxic stuff, so the finger of suspicion is now being pointed at the possible harm these shots are causing. As a result, it only makes sense for us PN folks to ask whether one of those toxic ingredients has produced in our bodies the PN we hate so much. You can read some of the discussions about this on this board, and since many of us are adults who haven't had vaccinations for 30 years or more, my vote is NO, this is not the cause of our disease. But as Dennis Miller the comedian likes to say in his rants, "I could be wrong."
 

 

I saw Dr. Rachal this morning. He is the first doctor I've ever seen who looked at me and said, "I know what this is and what causes it." I nearly fell off my chair. His information pretty much confirms what we already know - that it's a immune response issue. This is how he explained it:

There is a cell called Th2 that is a helper T cell. When there is too much Th2 in a person it causes over-production of two genes called IL4 and IL5; this in turn causes the inflammation and itching of PN. Allergies are thought to be Th2-dominant conditions. He strongly suggested a new drug called Enbrel, which inhibits the production of too much IL4 and IL5. Although it has proven to be very successful with psoriasis and other skin diseases, I would be his first patient with PN to try it.

I'm going to go for it if my insurance will pay. It's about $900 for one prescription. As Optimal Thinking and others have pointed out, there are alternative ways to deal with these immune issues. I came SO close with thalidomide before I had to stop it, I am willing to try one more experimental drug. Dr. Rachal said Enbrel is similar to thalidomide but has a stronger IL4-IL5 suppressive effect without the dangerous side effects.

In the meantime he prescribed a mixture of protopic, bactroban ointment and temovate ointment (mixed in equal parts). I'm a bit leery of the temovate (steroid) but since I'm having a flare-up I'm going to try it for a limited time. He also strongly recommended UVB light treatments (which I'm doing, but he wants me to increase the time).

You can search PubMed for Th2, IL4, IL5 but it's not "easy reading!"

www.ncbi.nlm.nih.gov/entrez/query.fcgi

Keeping my fingers crossed.  TJune 12-06-04

OptimalThinking's warning about Enbrel:

While I agree with the doctor that PN is partly immune and inflammation related, I don't agree with his opinion about the safety of Enbrel. Enbrel was a drug for RA and like Thalidomide and Remicade, are in the class of drugs called TNF inhibitors. It does make sense that a drug designed to suppress the inflammation, and inhibit TNF, would give some relief, but increase the chances for serious infections. FDA has issued warnings regarding Enbrel. Dangerous side effects like serious infections, including sepsis and death, are the basis of ensuing lawsuits. If anyone is thinking of using Enbrel, at least do a google search of "Enbrel safety concerns" and pages and pages of stuff comes up.

For low grade inflammation, you can do what I do, and add some powdered Turmeric to your drinking water to keep the inflammation in check. For high grade inflammation, you can also add a systemic enzyme like Vitalzym, which has Serrapeptase, to get the inflammation under control. These are safe and cheaper alternatives to these risk TNF inhibiting drugs. Just one caution: If anyone is on blood thinning medication like Wafarin, then you cannot take systemic enzymes as it's not advisable. But for everyone else, both Turmeric and Vitalzym should do the job of inflammation control.

    OptimalThinking  12-06-04

 

 

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