I Have PsA! What Is It?

So you got the word: you have PsA or at least your Doctor says it’s a possibility. You as a card-carrying member of the Information Age then do what any of us would do. You turn to your best friend – Google (or if you have been at this medical stuff awhile medscape) I know you have or you wouldn’t be reading this or have found Bens Friends.

In my real life I am researcher/teacher specifically I do the statistical analysis for a number of organizations who do research (mostly medical) and I also teach others to do the same. As a disclaimer I have worked for “Big Pharma” so I am the “devil” (sometimes)

If there is anything I know its numbers, statistics and probability. I say this because there is a lot information out there on the internet. More often than not, the folks presenting it are looking at these things - its numbers, statistics and probability WRONG. There is a lot more ignorance presented as fact on the internet than real knowledge. There are many more ignorant folks pushing an agenda (or a product) in attempt to draw attention to themselves than truly knowledgeable people offering real help.

Guess who you are most likely to find? As a result, the newly diagnosed find themselves dealing with fear and not the disease. Your job is to deal with the disease and fight the disease - not worry about it. We have seen far too many people delay or even forego treatment because of the fear spread through the net. Incidentally if you haven’t heard it yet most of us do quite well fighting this disease. It takes time to get there, but we do. (What choice do we have?)

People don’t take time to come on the Internet to tell us how great anything is, how well their treatment is working or the progress they are making. They want to rant rave and let everybody know how BAD things are. Its pretty easy to get the impression every medicine one takes has massive debilitating side effects that are worse than the disease it self. Its even easier to develop the impression that it is only a matter of time until one is debilitated by pain and the progression of the disease that they are house and bed bound. Of course neither is even close to true. Sites like ours are no different. People come here because they either want immediate information or things are not going well and they want to vent. A few stay around to help others. This leads to the first rule of research

Possible Is Not Probable: You will hear just about everything at one time or another. You will be certain that every medication has massive side effects, and that you will be in constant pain eventually ending up in the nursing home in a locked fetal position (see what I mean about nonsense on the internet) FWIW over 90% of us live a completely normal life. We do have to make adjustments, but no body goes through life without making adjustments.

As you do your research, you are going to invariably come across a number of theories, ideas, treatments, and even some plain nonsense. It will all sounds good and to make it even sound better there is often a “study” attached. Studies take all kinds of forms. Some are good studies. Some are not. I have been at it along time and I sometimes have trouble separating the good from the bad. There are a lot of basics that go into a good study, but the fact is in the medical world MOST studies aren’t trying to prove anything. They are the way scientists communicate with each other and share ideas. Once they are published and anyone can read them all kind of conclusions can be drawn.

I once got into a protracted debate with Google genius at an ankylosing spondylitis support site over a particular study. She was explaing in great detail why a particular medication was ineffective. The thing is I HAD DONE THE STUDY. I knew what it was about and it wasn’t that (the medication was actually quite effective.) Early studies are usually trying to find something to study or to develop a Hypothesis (fancy word for I think so and so) for a study. Sometime these things pan out sometimes they don’t. Most of the time they don’t. Yet in the Internet world they become fact and in support sites they become clubs that member use on each other (we shut that down quickly here) So that leads to rule 2.

Association Is Not Causation: There are hundreds of examples of this. It is the basis of about 95% of quack cures and treatments (especially diets) that you come across on the internet. Probably the best example I can think of is the urban legend that states most car accidents happen within 20 miles of home. Of course they do. It’s not often than most of us drive anywhere beyond 20 miles from home. Just because you have a study or even a “good set of numbers” doesn’t mean you have a “fact.” Most facts are actually coincidence. Look out your window, you will see a blue sky and a flat world, neither are true.

You need to be a knowledgeable patient who is able to participate fully in your care. You need to be able to askr questions and even offer suggestions as they apply to you. Docs like informed patients, it saves them a lot of time. You aren’t going to ever find, no matter how hard you look, a cause of PsA that is being hidden by some massive conspiracy, or an overlooked cure. You will drive yourself nuts trying. There are only three things that will have an effect on your disease. And these are the three main rules:

  1. Take your meds FEAR THE DISEASE NOT THE TREATMENT. There is not a single medication no matter how scary the CYA material written by lawyers attached to it makes it sound where the potential benefit does not outweigh the risks. Sometimes these risks develop a life of their own. My favorite was a commonly used drug that supposedly has a high cancer risk. First of all it never did What was reported (by law) is that several people taking the drug during the phase trials developed cancer. One of 3 people develops cancer in their life times anyway. When you do the math (there is long formula called patient years) it turns out fewer people developed cancer than would have been expected were they NOT taking the cancer. If you were breaking the association/causation rule you could almost claim the drug prevented cancer. In another instance the cancer developed was particular to teen age boys with Chrons Disease. As the med also treated Chrons Disease, one could assume that some teen-age boys would develop that form of cancer.
  2. Move. It’s that simple. The more you move participate in PT and other forms of targeted exercise the better the outcomes. Moving joints don’t rust
  3. Get yourself Healthy. Shouldn’t need much explanation but an unhealthy body with bad fuel doesn’t work real well. Neither does a car.

I’m not discouraging doing your own research because you should, just keep things in perspective. You are vulnerable, your emotions, thoughts, decision making can be pulled many directions pretty easily. If you find something that peaks your interest BRING IT TO THE GROUP. It’s likely someone has experience with it, or if new it could be a help to all. And here is where the last and most important rule of all comes in. Anyone can be anything they want on the Internet. With Google and cut and paste, anyone can be an instant expert on just about anything. At living with PsA we rift with real experts. We have several physicians oodles of healthcare professional from imaging to laboratory and at least one mortician. They can and do smell a google made expert really quickly. Unless you are really wrong you will generally go unchallenged but you likely will get ignored. There is no problem being a self appointed expert here but try it with your doc and you could have a real problem. Use your newfound knowledge discuss treatment options and outcomes with your doctor. Docs love to teach. In fact because Rheumatology is a fellowship sub-specialty of internal medicine, he has already proven his love for teaching and ability to succeed at it. Every doctor visit should be a collaborative event concentrating on your care plan.

Doctors have a surplus of patients out to prove they are smarter than their physicians. They also have a surplus of patients. It is never a good thing to get fired by a doc. He has a16 year head start in education on you. You have a lot of catching up to do. So be careful, he really does want to help you. He does not want to debate you.

So the last rule is: We Are All In This Together and It Is TOTALLY a TEAM effort

The most important thing is that you are not on this journey alone. Good luck with your research and remember the search function on this site works very well. Its a good place to start.