One of the problems of having a relatively rare condition is that there is very little known about it. This means that it can take months or even years to get a proper diagnosis because not all rheumatologists have heard of it, and certainly most doctors haven’t. PR is particularly hard because symptoms aren’t always visible but even when they are, by the time you get to see the Dr, they may have disappeared completely. This means that not only are people having to deal with flare ups of pain and fatigue, but without a diagnosis they can’t get proper treatment. There’s also quite a big psychological impact of having a bunch of, frankly, weird symptoms and not having a diagnosis.
Of course, the problems don’t just stop once you know what condition you have. What treatment you get is very dependent on the quality of your specialist and on how much knowledge they have. But even the ‘best’ clinician is still limited because the body of research into PR is so small. This means that, even though there’s been a bunch of research into other types of arthritic diseases, there’s very little known about this specific one. Treatment – as you’ll have gathered from reading my blog – is very much trial and error, and usually based on the treatment for rheumatoid arthritis. I had symptoms for over two years before I actually received any disease modifying drugs because my original clinicians didn’t take my condition seriously. Yet, because there is the potential for PR to develop into rheumatoid arthritis, it could be crucial for treatment with disease modifying drugs to start early to minimise the chance of this happening.
The other difficult thing about having a rare condition is that, as a patient, it’s really hard to get information about it, to discover whether what you’re experiencing is ‘normal’ and to hear about different ways of coping or dealing with the flare ups or pain. When I was first diagnosed, Arthritis Care had a leaflet which was completely inaccurate. It said that PR did not attack multiple joints at once, which is definitely not my experience at all. Thankfully, this leaflet has now been updated.
There is some good news. Arthritis Research UK are starting to do some research into PR. During the first stage, they will be asking anyone diagnosed with PR to complete a survey and to share their experiences. So if you’ve come across this blog and have PR (or think you have?) and haven’t filled out the survey yet, then please do go and fill it out. Hopefully the project will also raise awareness of PR and make it easier for new people experiencing symptoms to get a diagnosis and treatment.