I stopped taking methotrexate two weeks ago, and I feel no different, pain wise. I feel much more clear headed, much less nauseous and a bit less fatigued. So I’m clear about what effects the drugs were having, but unfortunately it didn’t improve my pain or inflammation levels.
So now what?
I am still taking plaquenil and naprosyn. But neither of these prevents flares. Infact, my day to day pain used to be a four or a five at best. Not hideous but a long way from pain free. Since Christmas, however, I have been living at sixes and sevens and eights. Quite a lot of eights. Infact every evening through to morning is at least an eight. 2am is often an eight and a half. Sleep is difficult and interrupted. I am still trying to exercise, but I’m finding that the exercise, is also making me feel worse, not better. I need nanna naps to get through the day and work is looking shakey. I only work 15 hours per week as it is!
So things are not good. Not good at all. And the really cool thing is that there are no more treatment options. I have tried all the standard treatments, with the exception of Arava (leflunomide), and even my rheumy doesn’t think Arava is a good choice for me. So all I can do is try sulfasalzine (salazopyrin) again, which I have taken before, and it didn’t help.
Apparently I am not eligible for biologic drugs, because my blood work is ‘too good’. My CRP is not high enough. My ESR is only barely elevated. It’s often completely normal. These are the only measures that count in Australia. Four years of pain and suffering is clearly not enough to qualify me. I have a positive anti-CCP, but negative RF. I have had a nuclear bone scan that clearly shows inflammation in my hands, feet, hips and shoulders. I have also had an MRI on my shoulder, and ultrasounds of my hips and shoulders. All show clear signs of RA. But according to ‘the rules’ someone like me should respond to one of the other agents (methotrexate, leflunomide, sulfasalazine).
So where does that leave me? I don’t know! I don’t see Rheumy again until May. I can’t even call him – the gatekeepers won’t put my call through. I swear they hire reception staff based on their ability to say ‘NO’ and rudely hang up the phone!
I’ve decided to try some diet interventions…gluten free. If anyone out there has tried it, please tell me what you found. Obviously I’m staying on all my current meds. I’m pretty sure I wouldn’t be able to move at all without those! But maybe I can get some improvement on some alternative therapies, like diet. Every little bit helps. We’ll see…