I was diagnosed years ago with Sjogren's and then the diagnosis switched to Lupus with secondary Sjogren's about 10 years ago. About 2 months ago, my rheumie said he saw no signs of lupus in my bloodwork and the disease was showing more signs of Sjogren's with secondary Lupus.
He explained it this way in that I have a mixed connective tissue disease and as such, they can 'morph' from on diagnosis to another and it is NOT abnormal. I have been on plaquenil for a few years ago.
As far as a biopsy for lupus, I had one for Sjogren's years ago but I've not heard of one for lupus. That doesn't mean there isn't one; just means I've not heard of it. AnnieView Thread
Years ago, when I was first diagnosed, I was told I had CNS lupus; then we moved and I proceeded to tell my NEW rheumy that I had CNS lupus. "Impossible!" you'd be on meds for the rest of your life for CNS lupus.
Then, I spoke with my new neurologist, "You'd be much sicker than you appear if you had CNS lupus. So, I guess have my answer that the first doc had misdiagnosed my symptoms.View Thread
I wouldn't call the doc ASAP, but come Monday, I'd call your PCP. I'm not your doc, but you OUGHT to call your doc, ASAP if some bleeding occurs. Are they little tiny purple/black spots? That could be petechiae,View Thread
THe jury is still out on that one and maybe the doc can weigh in on this. However, you'd be taking ORAL steroids and probably at LOW doses, not the high dose IV steroids that can be much more problematic.
That's not to ssy that oral steroids don't have side effects. Lyica, Ultracet and the whole gang can help with the pain, but I don't know of a one of them that will decrease the swelling. Then again, the swelling might be the cause of pain, but it's usually the other way around.
I have one of those side effects, osteonecrosis, but I think you have to have MAINTENANCE steroinds at a heftY dose for this to be a problem, BUT TALK IT OVER WITH YOU DOCView Thread
I have a 'stif heart' and lung involvement, pulmonary hypertension. I also have several blood clotting disorders which in and of themselves wouldn't be a problem but left to their own devices, anti-phospolipid syndromeView Thread
An example of palliative care in the lupus patient might be if a patient has lupus nephritis, someone who works in the palliative care specialty would realize that his/her job wasn't just to send the patient for dialysis if medically indicated.
Instead, the palliative care specialist would realize that if lasix or another diuretic was necessary, that the patient would be going to the bathroom frequently and might be at risk for falls. He might order that the patient have a commode next to the bed, as the commode would be easier than running to the bathroom and then potentially suffering a broken hip as a result of a run and a fall.
In some instances, the palliative care team might practice comfort and quality of life, making sure that the patient with lupus pleuritis had oxygen (ADEQUATE) in his care plan and aequate pain medication or other comfort medications and measures.View Thread
SVT =supraventricular tachycardia, a nice way of saying super fast heart rate that come from above the ventricles. (if it was ventricular, you wouldn't be walking around). Have they done a holter monitor where they have you wear an EKG 24-48 hours? EPS studies? There are other studies, but cardiology not being my specialty, I don't want to give wrong info. The doc can probably give you more accurate info. Are you short of breath? That''s one symptom. THey can measure a lot of things, but I don't know how much is necessary to measure to get an accurate diagnosis.
There are a lot of problems that lupus can wreck on the heart; I don't know if SVT is one, though. Pericarditis and endocarditis are a few.View Thread
My rhemie here in the Springs sent me to National Jewish in Denver to be evaluated for shortness of breath.The pulmonologist there wanted me to see a rheumie who was had as his subspecialty, pulmonolgy. I'm sure w/ nephritis, you're hooked up w;/ someone, but if you're ever looking, I'd hightly recommed that place.
THere's probably a rhemie there who has as his subspecialty, hephrology. But, I agree, communication to the PCP isn't good; no, wait a minute. NJH did communicate, but other places didn't.View Thread