The truth about living with Rheumatoid Arthritis

#diagnosis

What is Rheumatoid Arthritis?

If you are on this website, you either have Rheumatoid Arthritis, think you may have Rheumatoid Arthritis, or someone close to you does.  So lets cover the basics.

Rheumatoid arthritis (RA) is an autoimmune disease that causes chronic inflammation of the joints.  It usually affects the small joints (hands and feet) but any joint in the body can be affected.  The disease is usually symmetrical, (that is, if your right wrist is inflamed, your left wrist will be also) but this is not always the case.  Joints may appear red, hot and swollen, or they may be no visible signs at all.  Rheumatoid arthritis affects the synovium, or the fluid lining the joints.  This fluid becomes inflamed, and can cause severe pain.  The tissue surrounding the joints can also become inflamed, including the tendons, ligaments and muscles.

The severity of Rheumatoid Arthritis varies considerably.  Some people have mild disease, experiencing pain in their hands and feet from time to time.  This tends to be the public perception of RA.  This perception is very wrong, however, when it comes to people with moderate to severe disease.

For those with moderate to severe disease, the disease is devastating.  While inflammation of the tissue around the joints is characteristic of rheumatoid arthritis, the disease can also cause inflammation and injury in other organs in the body.  The heart, kidneys, the lungs, the eyes…all of these can become inflamed and damaged from the effects of RA.  Because it affects multiple organs, RA is referred to as a systemic illness, and is sometimes called Rheumatoid Disease.

People with severe disease often suffer irreversible damage to their joints, although studies have shown that the level of pain and stiffness a patient experiences doesn’t necessarily correlate to the amount of  damage visible on scans.  So a patient may have little damage, but intense pain.  Or a lot of damage, and not very much pain.

Pain is generally the limiting feature, and many people with moderate to severe RA are unable to work within five years of onset.  People with RA also experience severe fatigue, particularly during disease flares.  Some people are in a permanent state of flare, meaning that they are always in pain.

Around 30% of people do not respond to current treatments and must learn to live with crippling pain.

RA is a chronic disease, and there is no cure.  The condition can be managed to varying degrees with medication and lifestyle changes, but only the mildest cases continue to have a ‘normal’ life. People with moderate to severe RA experience considerable pain and disability, often made worse by the fact that the disease is often completely invisible.  And because many people claim to have arthritis, or call any ache or pain in their body ‘arthritis’ the disease is often not taken seriously.

Without a rheumatologists diagnosis (read the diagnostic criteria here), it is extremely ignorant and insensitive to claim to have rheumatoid arthritis, when so many people’s lives are completely altered and devastated by what is a very serious and painful disease.

Some people have periods of remission, where they are symptom free.  This is the aim of RA treatments, but many people never achieve this.  The public perception is that taking an advil or nurofen is all that’s necessary to relieve the pain, when in fact most people with active RA take low dose chemotherapy and biological drugs that have severe side effects, and only a moderate  success rate.

About 1 in a 100 people are affected by Rheumatoid Arthritis.  Women are two to three times more likely to get RA, and it affects all races equally.  It can begin at any age, even children suffer.  It most commonly hits around 35-55 years of age.  In some families, many members are affected, suggesting a genetic component to the disease, however others develop RA ‘out of the blue’ with no family history.

If you think you may have Rheumatoid Arthritis, the first step is to see your primary care physician, or general practioner and get a referal to a Rheumatologist.  Early diagnosis is key to preventing damage and provides the best treatment outcomes.

Getting a diagnosis of Seronegative Rheumatoid Arthritis (RA)

Seronegative Rheumatoid Arthritis. That’s me! It’s what my rheumy has suspected all along, but I didn’t completely meet the diagnostic criteria..and frankly he thought I had something worse. But now that I meet the criteria, it’s official.  See?  Told you I was sick!

So what’s changed? My bone scan shows synovitis. And my bloodwork shows some inflammation. My ESR is slightly elevated, and so is my CRP. My RF is still low, hence, seronegative. My anti-CCP is positive.

What does all that mean?

Firstly, RF or rheumatoid factor. People often refer to this as the ‘RA test’ but it isn’t really accurate. It is an autoantibody that is often, but not always, elevated in Rheumatoid Arthritis. About 70% of people with Rheumatoid Arthritis have a positive RF, but many people have a positive RF but do NOT have Rheumatoid Arthritis. Then there’s the other 30% who clearly have arthritis, but their RF is negative. That’s me. Being seronegative is supposed to correlate with milder disease. I hope that’s true, but I must admit, I’m doubtful.

Next. ESR, or erythrocyte sedimentation rate, or just ‘sed rate’. The test is non-specific, when elevated it shows that there is inflammation in the body. It could be from cancer, pregnancy or, you guessed it, Rheumatoid Arthritis, or any number of other reasons. Together with other signs and symptoms however, it is a useful test for confirming a Rheumatoid Arthritis diagnosis.

On to CRP, or C-Reactive Protein. This is a protein (surprisingly enough) found in the blood, that when elevated, also points to inflammation in the body. It is also non-specific and is a sign of acute inflammation.

And finally, anti-CCP. This stands for anti-cyclic citrullinated peptide antibody, and it’s another blood test which helps your doctor confirm a diagnosis. This is one of the newer Rheumatoid Arthritis markers, and it is very specific for RA – around 95%. It is still not conclusive, however. You can have RA with a negative anti-CCP. It’s just a whole lot less likely.

These are the basic blood tests. There are more, many more, but these would be the standard tests that a rheumatologist will use to figure out what’s wrong with you. They will also order x-rays, and probably a nuclear bone scan as well.  It is of course possible to have rheumatoid arthritis and have negative RF, ESR and CRP and anti-CCP.

But if all of these tests are negative, its really not very likely that you have RA.  And you will not meet the ACR criteria for and RA diagnosis. So you might get a diagnosis of ‘undifferentiated arthritis’ or ‘inflammatory arthritis’ or ‘suspected’ RA rather than Rheumatoid Arthritis.  This is not the same thing as moderate to severe, full blown Rheumatoid Arthritis.

Whatever your exact diagnosis,  good rheumatologist will start treatment, aggressive or not, depending on your symptoms and their experience. Should all the above blood work be negative, it’s statistically likely that its not RA and the arthritis will be mild and self limiting (i.e. go away on its own). There is of course the risk that it will develop into full blown RA, so it can be a hard decision to know how aggressively to treat.

Rheumatologists tend to treat agressively these days, as plenty of studies show that patients have better outcomes, less damage and a higher chance of going into remission with early, agressive treatment.  So if you rheumatologist suspects RA, even if you don’t meet the full criteria they will prescribe a first line DMARD treatment (such as methotrexate, arava and/or sulfasalazine).  Prednisone will often be used to get pain and inflammation under control quickly, as first line DMARDs are slow acting and can take several weeks to show any effect.

There are non aggressive approaches also.  If they suspect your disease is very mild inflammatory arthritis they will prescribe a second line treatment (such as plaquenil alone)  and an anti-inflammatory such as mobic or voltarin.

Rheumatologists are not infallible though…and mild RA can quickly become moderate or severe. Having a rheumatologist monitor your condition is essential.  Most people need NSAIDs (non-steroidal anti-inflammatories) or corticosteroids to get their disease under control.  At least initially.  The aim is ofcourse to take the minimum medications to get rheumatoid arthritis under control.  In severe cases, a patient might take several DMARDS, an NSAID and prednisone.  Just to get out of bed in the morning.

Some doctors use blood test results (ESR and CRP) to measure how severe or active your disease is, although it’s pretty obvious if you actually talk to patients, that many times the blood work and the amount of pain or damage don’t correlate at all. Accurate scans, like ultrasound and nuclear bone scans often tell a better story.  X-rays are quite often clean, because it generally takes time for damage to show on x-ray.

If you’ve never had an x-ray or a bone scan or an ultrasound or an MRI to examine the condition of your joints, your rheumatlogist is either incompetent or very sure you don’t have RA.

X-rays are essential in the initial stages so the progression of the disease can be monitored over time.  It’s a baseline, a starting point.  Some people will start to see damage on their x-rays in a matter of months.  The goal of treatment is to prevent this damage, because once done, it cannot be undone.  If your rheumatologist is treating you and yet your scans show disease progression, they know they need to treat more agressively with more agressive medications.

The doctors are still catching up. There’s so much that isn’t known about inflammatory arthritis, rheumatoid arthritis and auto immune disease in general. But until your blood work shows something, you don’t get an official diagnosis. You get the raised-eyebrow treatment. Or a diagnosis of depression, and a script for anti depressants. Which, if you are depressed (from seeing all these doctors who don’t believe you) might help your mood. But they won’t help your ‘suspected’ arthritis!

Who am I?

So who am I?  I’m Arthritic Chick!  Five years ago my hands started to hurt, then my feet, then my knees…until almost every joint in my body ached.  Even my ribs.  Who’d have thought that ribs were joints, eh???

Anyway, five years, countless tests, therapies, drugs and doctors later, I have tried countless treatments and gathered diagnoses. (I have had everything from rheumatoid arthritis, ankylosing spondylitis, undifferentiated spondylitis, undifferentiated inflammatory arthritis, mixed connective tissue disease, and my personal favourite, “symmetrical, bilateral, inflammatory polyarthritis with axial involvement“…try explaining THAT at dinner parties!).

I have reached a certain peace with my life as it is.  I have accepted that I will probably always have pain somewhere in my body. At the same time I realise there are many who are FAR worse off than me.  I have days where I scream and cry that it’s not fair, and days where I climb (metaphorical) mountains and know that one day I’ll climb the real thing.  I’m up and down, and sometimes I go around and around as I try to find some answers, or meaning in all this.  My life can be ugly and beautiful…and while this disease is FAR from a gift, there are good things to be found here.

So this is my blog.  I hope I’ll connect with lots of other people out there like myself.  I’ll be writing about my disease, my pain, my battle with doctors…and the beautiful people I’ve met along the way.  I hope you guys stick around and write back!

A brief history

Pain in hands, pain in feet, then pain in knees.  Trip to rheumatologist (after waiting nearly a six months for an appointment – why aren’t there enough rheumies in the world???) who tested me for everything under the sun…lupus, ms, RA, myeloma, lymphoma, leukemia, all kinds of cancer…very scarey time.  Everything came back more or less fine .  A few autoimmune markers…positive ANA, positive anti-CCP.  Negative RF.  Kidney function not great.  Strange rash on my face that would come and go.  Sore, crazy dry eyes and  mouth…but negative anti-SSA/RO antibodies.  Raynaud’s phenomenon.  Symmetrical bilateral arthritis…very painful, but non-erosive.  A bone scan showing synovitis in my hands and feet…..AND hips and shoulders.  Small joints affected, large joints affected.  So..Mixed Connective Tissue Disease, which is a combination of several autoimmune diseases. Autoimmune diseases are all about criteria.  Meet the criteria, you have the disease.  But sometimes you don’t quite meet the criteria, but have many of the signs and symptoms. I am that way with Lupus (SLE – systemic lupus erythematosus with the focus being on seronegative Rheumatoid  Arthritis!  Not cancer! Yay!!!  Diagnosis!!! Reason for all this pain.

Thank the gods!  Now let’s get started on making it go away!

Then I googled.   Wait…Not Yay.. DefinatelyNot. Yay.

No cure?  What do you mean, no CURE???  Can’t medicine cure everything?  Er, no actually.  Doctors are not God.  Shame about that.

But there are *treatments*.  Oh, OK.  Good then.  Gimme those!

Wait.  Not so fast.  They take time to work.  Lots of time.  And there are side effects.  Some of them are quite unpleasant.  E.g. one of the side effects of methotrexate is…DEATH.  That’s a pretty severe side effect, as side effects go.  Wait…let’s just start with the safer drugs…

So it began…I refused methotrexate at first. I refused to believe I was that sick. Denial.  Possibly a very big mistake, but no use worrying about it now.  So I went with sulfasalazine, plaquenil and celebrex. Then I swapped the celebrex for diclofenac, then mobic, then ibuprofen, then finally naprosyn.  Which helped some.

Next was tonnes of prednisone – finally some relief! And the realisation that the doctors were right – I have moderate to severe rheumatoid arthritis and the denial had to end. So on to methotrexate…imuran, arava…and a few more I’ve forgotten. In all kinds of combinations.   Long journey.

And in the meantime, my RA has progressed.  I have lots of pain in my Sacroilliac (SI) Joint, my ribs often ache and sometimes the pain is horrendous (costochondritis), my elbows won’t straighten most days and my shoulders…well, lets not even go there. Lately I my jaw has started to ache…so soft food only!

Methotrexate has made me worse rather than better.  It is the gold standard treatment for RA, but I’ve had to stop taking it because of the side effects.

The drugs from here on in get worse and worse and scarier and scarier. But life with Rheumatoid Arthritis is pretty scarey too. I live in hope of finding the magic combination of drugs and lifestyle that will make me whole again. And allow me rejoin the real world.