Living with Psoriatic Arthritis (PsA)

Symptom Control vs Disease Control

Controlling your PsA symptoms is good, but please don’t confuse it with controlling your disease. The cold, hard truth is this: the only scientifically-proven way of slowing down the damage of PsA is with specialized medications from your rheumatologist. And by “scientifically proven” we mean large-scale, well-designed research recognized by The National Institutes of Health and similar bodies.

Look at it this way: suppose you have an achy, sensitive tooth. You know that something is going on with it, but you find that as long as you don’t chew hard foods, you take some OTC medications, and you avoid drinking anything too hot or cold, you feel just fine. You hardly notice that you have a problem tooth. But in your heart you know that the only real solution to your problem is to go to the dentist and take his/her treatment advice. And you also know that if you put it off, you may well be in for greater misery than you have now. There you have it: dental symptom control is not the same as dental problem control. And so it is with PsA.

All of us are concerned with symptom control: without it, our quality of life would suffer. There is a whole section of this site devoted to complementary therapies for a very good reason! Massage, anti-inflammatory diets, acupuncture, gluten free regimes – some people find that they really help ease disease symptoms. But no matter how good your symptom control is, PsA can still be causing joint damage. And joint damage, once done, is permanent. That is why it’s so important to consider the advice of your rheumatologist very, very carefully. And that is why we call them “complementary therapies”: their role is in addition to the treatments that we know have been scientifically proven to prevent the potential damage of PsA. And make no mistake about it: this disease, while it can be mild, can also be aggressive and highly destructive. It is with good reason that one of our mantras around here is “Fear the disease, not the drugs”.

Could not have said it better myself!

I am glad to see someone pointing this out. I said something similar yesterday on a post from the Nationsl Psoriasis Foundation article about hearing impairment caused by PsA. People went from discussing the article to recommending coconut oil to “control the disease”. I pointed out that rubbing coconut oil on your skin was only treating a symptom and would not stop destruction of the inner ear. It was frightening to me that people were confusing treatment of symptoms with treatment of inflammation and its causes. One even went so far as to talk about putting coconut oil in the ear canal! My undergraduate degree is speech path/audiology/deaf ed, and I almost came off the couch when I read that suggestion. Lord save us from ourselves as we get desperate enough to do anything to limit this disease and its symptoms.

Suggestions like that scare me silly too, Dana, and wouldn’t last long on this board. We try very hard to provide people with the best information and support possible to battle this disease, and sometimes, in doing so, we annoy and alienate people.

Sadly, though, people do get “desperate enough to do anything to limit this disease and its symptoms”, as you say. I would hope that any suggestions that they read here wouldn’t leave them with irreparable damage down the road. This disease is bad enough!

It's rare that we see people with uncontrolled disease and the damage that it can cause. Clearly when we are not diagnosed correctly, this is something that can prevent proper treatment. I have seen the damage that it can cause with my own eyes, as my mother was not diagnosed with PsA until just this last year, and all of her IP joints are destroyed. Thankfully her disease has been fairly limited to these joints.

Thanks for this post Seenie.

Oil oil to control itching isn't much past menthol and camphor "Muscle Rub" to control joint pain symptoms. In the latter case, you're just hiding a process causing damage.

To be well rounded, I will point out that if you couldn't sleep due to itching, at least a topical olive or coconut oil might help you sleep better. And sleep improves mood.

I have been watching AutoimmuneSummit.com.

It is free. It runs through the 17th. There are a group of integrative doctors who speak.

from the home page: "Based on twin studies, we now know that 25% of autoimmunity is genetics, and the other 75% is environment. I believe there are 5 main environmental factors that contribute to autoimmunity: leaky gut, diet, stress, toxins, and infections. Every one of these is a piece of the pie--for some, one piece may be bigger--but all play a role to some degree.

Each day of The Autoimmune Summit will include speakers from each category. In addition, certain experts will discuss special cases in autoimmunity, and why autoimmune disease has become such an epidemic."