When your average person hears the word ‘arthritis’ what comes to mind? Probably their little 82 year old grandmother, hunched over using her cane talking about the weather aggravating her joints. Her suffering is valid and very real, but that is not the only type of arthritis. Juvenile Rheumatoid Arthritis (or Juvenile Idiopathic Arthritis) is a problem that faces thousands of young people – maybe even someone you know. Unlike the classic example of Granny, these children can become ill even as babies. There is no known cause, but there are some good ideas floating around out there. Until we can really determine the cause, I believe there is little hope of finding a cure.

There are three major types of JRA. Each one has its own set of fun effects, so let’s take a look:

• Oligoarticular JRA: This ‘nicest’ form of JRA affects four or fewer joints. Joints used more often – the main weight bearing joints like knees and those in the arms – tend to be the most often affected by this form of JRA.
• Polyarticular JRA: It’s one step up from oligo, in that the number of joints affected is five or more. Hips, ankles, feet, hands, etc, are all more likely to be affected here. Just to add to this condition, low-grade fevers are common and nodules can randomly appear on your body.
• Systemic JRA: This condition is not just limited to the joints. In addition to the effects listed for poly, systemic JRA includes a super fun rash that just burns like all get out. We also experience really high fevers – I’ve hit 106 more than once. Lymph nodes become enlarged. And in addition to all of this, organs can be affected as well.

Only one or two children in a thousand will develop any of these types of JRA – only ten-percent of those are lucky enough to get the systemic kind.

And I’m one of them. This is my story.
But first a disclaimer – if I make comparisons to another disease, I am not at all trying to belittle the experiences of people with that disease. I have family members who have battled breast cancer and I definitely do not envy their experiences and pain.

As a five-year-old in kindergarten, I had all the energy in the world. I loved to read and run around, and wanted to be a ballerina. Then, in November of 1993, I just got crazy exhausted. Fatigue was one of the first things I experienced. Then came the rash. This salmon-colored rash started popping up all over my body, mainly appearing in the evening and late night when of course no doctor could see me. And then in the morning, it was gone. This rash itched worse than anything I can explain. I’ve dealt with hot peppers and gotten the juice on my skin – and even habanero peppers have nothing on this rash. Then again, sometimes there’s no itching.

We went through so many doctors and visits and countless blood draws. We didn’t know that blood tests for the rheumatic factor – which often show rheumatoid arthritis or lupus being present – usually fail to show signs of JRA. But that would not have helped anyway, since many doctors did not really know a lot about JRA. But hey, we knew a lot about my blood counts then.

I consistently had high levels of phosphorus, alkalines, and LDH. I was anemic and had a high white/low red blood cell count and so much more. I was losing proteins quickly. Every time I expel fluids at all, protein goes with it.

All of these symptoms could be a lot of different things, but we got a fun misdiagnosis – leukemia. I was told, at six years old, that I had six weeks to live. To this day, it’s really a difficult subject to talk about for me. I feel like death is sometimes the Maleficent to my Sleeping Beauty – the monster hiding in the shadows, watching and waiting for that perfect moment to strike. Despite this being a misdiagnosis, I sometimes feel like I’ve cheated death and it knows.

Thankfully, my mother had some medical training before I had taken ill and was suspicious. The symptoms were a little too different to follow doctors blindly. She worked her butt off, poring over hundreds of medical textbooks. And finally it was my mother – not the doctors with all their fancy training – who figured out what I had.

In the middle of all of this, I also ended up dealing with uveitis – or swelling in the eye. They thought I had pink eye until I reacted to the eye drops. And I had to deal with the normal kid maladies too. I gotta tell ya, getting chicken pox on top of this rash was the worst thing ever. There was no way not to scratch.

With all these problems, it’s really difficult to lead a ‘normal’ life, whatever that is. Sometimes the medications we’re given help – and sometimes they make us WAY sicker. And what works for you might not work for me.

Up until the last couple of days, I’ve been on a mix of Plaquenil (an anti-malarial), Prednisone (corticosteroid), Vitamin D, Folic Acid, and Methotrexate (chemotherapy). The Plaquenil helped to control the day-to-day symptoms of my RA until I had a major flare-up due to an allergic reaction. Since then, it has felt as though this medication has ceased working on its own. So the Prednisone and vitamin D were introduced. The Prednisone was there just temporarily at first to help get that flare-up under control. Then, it became pretty clear that I needed that just to make it through the day, at least for now. The vitamin D helps to counteract some of the negative effects of the steroids. The folic acid was introduced to counteract effects from the methotrexate,  which was started when the Prednisone and Plaquenil ceased to do the job. I’m happy to say that, as of this post, I am going on my first few days without the methotrexate. It is a very destructive drug overall and, in the end, was making me more ill than helping. In the next weeks, I am going to start Humira injections – if I can get funding for the ridiculously expensive drug. Even with my student insurance, which generally brings co-pays down to $10 or $50, my co-pay would be a whopping $600 per bi-weekly shot. So we’ll see what happens there.

But there are a ton of treatments out there for rheumatoid arthritis – some of them obviously work a lot better than others. Here is a short breakdown of information on these medications:

First line medications: These drugs compose the first line of defense against RA. Included here are drugs like NSAIDs (Non-steroidal anti-inflammatory drugs) like Aleve and ibuprofen. These are generally chosen because, comparatively speaking, they have a low risk of side effects and can help to alleviate both pain and swelling. However, they really don’t do anything to stop the progression of the disease. Corticosteroids become included in this line of defense because of their ability to help with swelling as well.

Second line medications: Generally speaking, the most commonly used medication here is our friend methotrexate. What it does is halt the rapid production of cells, so it is believed that it helps with RA and the like because the inflammatory process acts in such a way. Other drugs in this list include DMARDs – disease-modifying anti-rheumatic drugs. Biologics and TNF inhibitors are generally included in this group as well, but I think this is incorrect.

Third line medications: Okay, so generally speaking, this is not how the medication lists are viewed. As I mentioned above, biologics and TNF inhibitors are generally included in the second line of defense. However, being a patient, I know that doctors will try many of the other drugs like methotrexate and sulfasalazine before moving onto biologics and the like. So here, in this third line of defense I am creating, is where these medications should fit. They’re often the last steps in the progression of treatment, due to both their possible side effects and their costs. However, they also tend to be the medications that people respond most positively to. These include Humira (TNF), which I’ll be starting soon, and Enbrel (biologic), which has wonderful reviews right now as well.

Obviously, medication is not the only treatment.

Focus on the whole person.
Meditation is used by many to help control the effects of their pain. I used to do this often, but now seem to find that it doesn’t help as much. But that may just be due to the fatigue from the methotrexate causing me to be unable to focus. There are all sorts of methods on meditating for pain reduction out there. It’s definitely worth a look.

Attitude is a huge part of treatment for any disease, but especially for one that can be so painful and debilitating. It is difficult to maintain a positive attitude going through all these problems, but it can be a make or break you day kind of thing. Being angry about being sick does not solve anything, so why not improve your health by trying to maintain a positive outlook?

Diet, exercise, and physical therapy are all super important too. Some people are able to find that certain foods trigger their symptoms and so are able to avoid major flare-ups as long as they try to avoid these things. Others realize the importance of exercise – getting those joints moving. It is imperative to do so, even if you don’t feel like it. Sometimes the exercise can actually help ease the pain, so that’s a good thing to keep in mind. It might hurt right at first, but it gets better. I think physical therapy goes without saying, but I have not yet been able to experience that one so who knows.

The most important things to remember are that you are the boss of your situation and that you don’t need to feel ‘weird.’ I struggle with both of those problems often, and many others do as well – whether or not they have a chronic illness.

With your illness, you’ll have plenty of hurdles to jump. But you can do it if you put together the right support team. But that’s a discussion for another time.

Guest blogger Bio
Name: Kirsten W.
Homebase: Madison, WI
Blog: http://notstandingstillsdisease.blogspot.com/
Diagnosis – Juvenile Rheumatoid Arthritis