Seeking some guidance
Hi guys!
I’m going to share a quick recap of my journey so far and I am looking for some advice, as I am unsure how to proceed.
I (F, 29) have been diagnosed in march 2023, after 6 months of excruciating pain, dactylitis, and overnight onset of head to toe psoriasis. I have been on 20mg mtx injections ever since. While I never had another massive flare, my quality of life is kind of bad. I have constant pain that comes and goes (anywhere from a 1 to a 6; not necessarily morning stiffness but it is a bit worse in the morning), few patches of psoriasis that won’t go away, and recently terrible side effects from mtx - nausea, pre-injection anxiety, brain fog… i do take folic acid but it doesn’t do much for me.
My rheum keeps saying my pain is mechanic, that on paper I am golden (blood tests are on the upper limit but in rage), she even suggested some antidepressants and that’s pretty much where i lost confidence. Because I come to her with real symptoms and she feels fairly dismissive.
After mtx side effects got bad enough that the benefits do not outweigh them anymore, I stopped taking it. I let my rheum know and she suggested leflunomide. Read worse things compared to mtx about it and I will not touch that. I’ve been off treatment for 6 weeks now and nothing has changed. Pain still varies, patches still there… only difference is the brain fog cleared up and my mood is a bit better overall.
Now, my question is: where to now? I do not qualify for biologics, I do not want to try leflunomide and I will throw up for days before seeing another fluorescent yellow vial of poison. But I also dread the silent killer part of this disease and I don’t want to end up with more damage than I can handle.
2nd opinion coming soon, i have an appt in 1.5 months. However, in the meantime, I feel lost. Maybe someone here has been through this and can shine a light for me.
Thank you and wishing you a pain free day 🌸