I knew it wouldn't be straightforward.
I saw my favourite Rheumy nurse today and had an open and honest discussion about my situation. To summarise
* I've failed on 3 out of 4 DMARDs
* The Lef is holding the disease at bay but not stopping it
* I'm worried about the number of joints the disease is now affecting, particularly my back
* I'm scared to move too high up the chain to biologics so soon
I also threw a few other rocks in the pool such as the regular tingling and numbness in my extremeties, the now intolerable night sweats and the crippling exhaustion that indicates the disease - despite the lack of swelling and redness - is once again active. The affected joints are hot to the touch, confirming my suspicions.
We talked about my preference to try Penacillamine with Lef and two things happened : I finally convinced myself I'm actually quite ill and realised I need to be more aggressive in my disease management, and Nurse told me I was off the Lef anyway. Numbness/tingling is a side effect of Lef that can cause permanent nerve damage, usually only seen after some years on the drug but ith my history of adverse reactions they're taking no chances. It could also be part and parcel of the disease.
Strike the above, I've now failed on 4 DMARDs (well not exactly failed, I just can't seem to tolerate them!).
Which rather narrows my choices somewhat.
As of this morning I'm half a pint of blood lighter as they test me for diabetes, thyroid problems, folic acid and /or B12 deficiencies and anything else that could cause the numbness and tingling which has actually prevented me from working, so intense is the sensation. I'm also being referred for nerve conduction tests to see if there's any nerve impairment as a result of either the RA or the Lef.
So finally, after all the hand-wringing (albeit softly and gently) and sleepless nights about my predicament the oft-referenced ball is now rolling to get me onto Humira as soon as possible. In the meantime I'm off to find a travelling circus so I can find a bottle of Snake Oil that'll hopefully do *something* in the meantime.