I haven’t posted for a while as been adjusting. RA diagnosed March, been on methotrexate since April alongside hydroxychloroquine since January. MTX by injections since June due to bad side effects on pills. Currently 20mg a week.
I have a review next week with a new consultant. I am wondering how you know if you can still improve further on a drug or when you decide it’s not good enough for you? I am better than I was at diagnosis, less stiffness and swelling but still not back to ‘normal ‘. I can walk better though. I feel like someone took out my stuffing on many days and feel weak and exhausted. My hands are still very painful and recently have stiffened up again along with my hips and shoulder. I can’t take NSAIDs due to a stomach condition and choose not to take codeine or opiate based painkillers due to problems with side effects. I have limited reserves and can do less than I used to.
I am wondering if this is as good as I can expect on MTX or if I should be asking about other options. How do you know what is caused by RA and what is by the drugs?
The last registrar I saw said that she believes they have not got me on the right dose yet ( so she increased it) and that feeling like this is because the RA is still not under control so my immune system is still attacking me and that when the drugs are right I should feel back to my pre-RA self. Is this realistic? Is it possible to get back to how you were before RA? I’ve been on MTX 6 months, do I persist? I am scared of other options like biologics as they seem so complicated and can open the door to other problems if I have understood correctly. Plus getting funding just adds to the stress.
I should add that my blood tests are not helpful in decision making as they have been fairly normal throughout, even when I couldn’t walk or dress myself, so the doctors go on clinical signs and what I report - so in that sense we cannot look at test results and say oh yes the MTX has reduced your inflammation (etc) as mine doesn’t show up in the antibody tests.
Thanks for any tips from your experience.