How did they rule out lupus?
Was it by negative ANA alone, or also negative anti-dsDNA?
Well, Kristin, let's see if we should be alarmed here or not. Do you have:
- dark urine
- foamy urine
- red urine (trace blood)
- swelling, especially feet/ankles
- you prbly would have mentioned if you have kidney pain
- low urine output, with resulting high blood pressure
If not having those, we can relax for now.
Nephritis, especially lupus nephritis, is generally a big thing. It can cause not enough secretion of potassium and not enough retention of sodium. Meanwhile, the kidney inflammation (neph = kidney) can possibly cause irreversible kidney damage. I don't usually talk in an alarming way, but this is different - esp since you've had something inflammatory for years. Also, there are other types of nephritis besides from lupus.
But there can be other causes for your mineral imbalance. Didn't they order creatinine/GFR testing? That can help distinguish from non-inflammatory causes.
Are you maybe dehydrated? Any severe estrogen effects?
I suppose I should say at the end here that you prbly don't have kidney damage, but it's a big enough thing that it should be kept in mind.
Let me know how your appt goes. The GP's reaction can be anything from being impressed to just brushing everything off.
Is Lyme common where you are?
It's best to know as much as possible about your tests before your appt, so you don't waste precious time with the doc having to explain.
ESR (aka sed rate) and CRP are very common and inexpensive blood tests for inflammation. It's extremely unlikely you didn't have those tests. Look in your web portal.
There are more advanced tests for *chronic* inflammation, such as IL-1, IL-6 and TNF. You should want those.
You also almost certainly had the ANA test, that result is important.
You have "large joint" inflammation. But Rheumatoid Arthritis would normally be in "small joints", most especially fingers. Still, it's fairly mandatory to have run the RF test, to rule RA out. It's lucky you don't have RA, because that's very destructive.
"myo" = muscle, so myositis is inflammation of muscle
"poly" = many (places)
"derma" = skin
I'd ask the new rheumy to try a small dose of prednisone (a steroid), for a short period - just to see how much relief you get. You should not want high dose or long term at this point, because of a myriad of bad side effects.
Or try Plaquenil (hydroxychloroquine), which is pretty safe.
I'd say it's wrong for the previous rheumy to say "you don't have lupus or rheumatoid arthritis, so goodbye". Especially since you are progressing.
Do you have insomnia? And/or immense life stress?
I should mention that I’m otherwise healthy and active - 5’6’’ and 115 lbs. There is a family history of autoimmune stuff (my father has chronic fatigue syndrome and fibromyalgia, cousin has celiac)