Melissa, thank you for the information, it helps a lot! I have been on a lot of different medication over the years, including Enbrel, Meloxicam, Celebrex, Methotrexate, Prednisone, Colchicine, Plaqueneil, (not sure of all spellings!) and a number of others. The problem is they can't put a 'name' on the disease I have. My ANA is positive with patterns, even when I'm not having a flare up. They've have told me Wegeners, Lou Gerigs, SLE, Lupus, Giant Cell Arteritis, Ankylosing Spondylitis, Psoriatic Arthritis, Sjogerns, Fibromyalgia (confirmed), and a number of other diagnoses but after months of treatment for any and all of these, I'm no better. I am back to being on nothing but painkillers now, but even they don't really help much. I also take calcium +D, potassium, fiber, fluid pill, B1 B6 , B12, and sleeping pills.
My new Rheumy is good and I really like him - he's about the 6th one I've been too because the others (including two at the Mayo clinic) just shake their heads, says they don't know and send me a huge bill. One even told me "if it was anything serious, you'd be dead by now"! The new rheumy has gone through ALL my previous blood tests and medical reports and concluded that it definitely is not an arthritic problem (which I had already). Even though all my joints get swollen, my muscles are terribly painful, and I get cramps all over my body, eye problems, twitching, sleep problems, severe fatigue etc. Sometimes, I just can't walk at all (it's like I'm too heavy to stand up!). He said he thinks this comes under the Lupus umbrella. He said that's how we have to treat it, as we may never know what I have. I agreed, because not knowing is killing me, and I am fed up of 'hurry up and wait' which I've had to do for years now. I am ok now with not knowing what I have, I just want to get some semblance of a life back. I still work full time, which is a big struggle, but have to do it for financial reasons. I am fortunate that my boss lets me work from home sometimes but who knows how long that will last. I have to use a wheelchair sometimes at weekends when we go out to the store and that is embarrassing, humiliating and just downright NOT FAIR!
I am ready for the 'big guns' as you call them. I have read that the Benlysta is usually given in conjunction with another Lupus drug but my Rhemy says we need to go in heavy and try and knock this on the head.
Thanks for sharing the info, I hope this is the start of a good thing for me, I'm ready.
Sue - English transplant living my American Dream.
Living with undiagnosed disease since about 2005. Many symptoms including joint and muscle pain, inflammation and pain everywhere from scalp to ankles.Large intestine not working - removed. Right sided weakness, frequently unable to walk, memory problems, restless legs, body cramps esp in back and legs, eye and facial twitches. Also fibromyalgia.