Tom, welcome (again!). You’re in what I’ve started calling “The Gap” – the period of time between diagnosis and the time you find treatment that works for you. Many of us remember The Gap as the absolute worst phase of our disease, especially psychologically. You’re in pain, on first-line medications that take months to kick in (if they work at all, and they don’t have a great track record), and trying to get your mind around the potentially far-reaching implications of your diagnosis. That’s hard, really hard. I hope that you will make yourself at home here and feel free to tell it like it is for you – Stoney’s right, you don’t have to put your happy face on here. We get it.
I took early retirement from teaching because I was tired and worn out and sore and I needed joint replacements. Only five years after packing it in did I get a diagnosis of PsA. Finally, after a few false medication starts, my meds now (Enbrel) have me feeling better than I’ve felt for about twenty years. No word of a lie. I have energy that lasts me through the day, I’m mentally sharp again, and my long standing depression has lifted. I wish I could go back to work (part time, of course), but it’s too late for me.
The tragic part of my tale is that I was diagnosed after the severe joint damage had started, and by the time we found the medication that put me into remission, there had been more damage still. I have what my rheumatologist (make that my current rheumatologist, not the one I fired) assessed as “severe disease, a lot of damage”.(I have 3, soon to be 4, joint replacements, and foot damage that makes walking difficult.) If I’d been correctly diagnosed years ago, and put on aggressive treatment quickly, all of that might have been avoided, and I would have had many years of feeling well, and I might still be working.
The diagnosis of PsA is not a sentence, and the disease isn’t necessarily very progressive. But you do have to do everything in your power to take control of the situation. Learn everything that you can about it, so that you can make solid, informed decisions with your docs. (Sadly, most GPs know very little, and even some rheumatologists are pretty clueless.) Find a rheumatologist who knows his or her stuff, listens, and who is prepared to be aggressive with treatment. You may have to kiss some frogs along the way. And finally, accept the most aggressive treatment that your rheumatologist is prepared to give you.
And, of course, come here. Vent. We do get it, and if we think you’re having a pity party we’ll tell you to give your head a shake. We’re pretty focused on evidence-based treatments here, and we don’t go in for a whole lot of drama, but we are a pretty sympathetic bunch on the whole.
C
PS What Stoney says about MTX and alcohol is true. The guidelines are different in European countries and in Australia, from what they are in North America. My choice is to drink wine (and the occasional beer) selectively and moderately as long as my liver tests are OK.