27F. Apologies for possible format issues, I’m on mobile.

I was diagnosed about 3 years ago. MRI and gene test came back clear. I was on salazoyrin 2000mg daily for about a year and my OG rheum wanted to start me on Humira. Unfortunately just as I was about to start biologics I had to move country. I’m now under the NHS in England with a new rheum and they’re far more strict regarding biologics so sadly I wasn’t able to start.

I personally felt the salazopyrin wasn’t really helping me and I began to get an upset stomach very often. For 3 months I trialed a half dose of salazopyrin on my rheums advice. Still wasn’t feeling much better so she decided I should come off the medication and take cocodamol as needed.

Which brings me to this week. I stopped taking salazopyrin June 24th. Still get the occasional upset stomach so I think now it may be a food intolerance or something (coeliac runs in my family so I’m debating asking for a blood test). Had a rheum appointment Tuesday, I really like my rheum as a person but I think she’s severely suffering due to having too many patients, every time I see her I have to go over the most basic details of my case so I feel like nothing ever happens in my appointments. This week she decided that I should stick with cocodamol as needed and she’s referring me for an ultrasound on my hands. She also suggested losing weight to ease pressure on my joints (5ft 4, 66kg). I have been referred for physio as well to try and get back some mobility in my back.

I’m normally not very good at advocating for myself and I just wondered if anyone here had any advice for me. I won’t see her again until November but she has said if I have any questions to email her. Is there anything I need to be asking for? I’m in pain most days and I’m scared it will get worse. I’m even more scared that cocodamol will stop working or I will become dependant on it. I really just don’t know what I should be doing for myself. I’m not asking for suggestions of medications. Just wondering how to further advocate for myself or any unorthodox things people find helpful.