I began taking MTX for my GCA from the very beginning of my illness because high dose steroids caused mania. So I have never been on 'just steroids' for the last 18 months. About 3 months ago I finally felt vaguely normal and pain-free and had some ENERGY and was only on 8mgs pred. I hate my MTX (diarrhoea, blood tests, always having to stop and start, can't get my surgery to prescribe them, reduced skin immunity) so I thought I would try stopping it and see what happened. It takes about 6 weeks for MTX to begin or stop working. Over those 6 weeks I gradually got more and more shoulder pain and stiffness. This week, I was waking up in the night groaning in pain! I didn't increase the pred although I thought I might if I needed to. So, here we are, 8 weeks into the experiment and I started back on MTX yesterday.
What did I learn? Well, it works! Whether as a steroid sparer or as a disease suppressant - it is definitely doing something. I also learnt that I can't bear to increase my pred. Months and months of dropping the dose and still looking like an over-inflated hamster - I just couldn't bear to put myself up to 10. And I still have active disease after all this time (4 years and counting now). Boo One of my hopes was that I might get some feeling back in my hands - they went all fuzzy overnight about 6 months ago and I work as a pianist. They are just the same. It makes me so sad. Another loss to grieve. I'll never know if it is the drugs or the disease causing a peripheral neuropathy.
So I suppose I had 2 months off MTX and avoided 2 blood tests and may six trips to the doctors and pharmacists to try to get my drugs. Now back at square one. But sometimes you have to just suck it and see. I am going to accept 8mgs pred and MTX for another few months and then I might just run the experiment again!