After seeing a rheumatologist for a follow up appointment on Monday where I was given a diagnosis of a mild form of Lupus, today I have received a copy of the GP letter from him where he says that with my symptoms and positive ANA centromere pattern at 1:640 and positive Anti Ro I have cutaneous Lupus but goes on to say ' whether or not this immune issue is having an effect on her overwhelming symptoms of pain and fatigue is a moot point' !
Can you not get joint pain and fatigue with any form of Lupus???
I was diagnosed with UCTD in 2002 and Fibromyalgia in 2010 and everything has got much worse over the last 18 months, during which I have had to give up my career and my life has pretty much come to a standstill.., my worse symptoms are overwhelming fatigue, joint pain in many areas and worse in my hips, back and feet, also bad Raynauds in my hands and feet, and photosensitivity, chronic migraines, constant spaced out feeling, hypersensitivity to many drugs which is making pain relief very difficult, along with many other things.
I have also had decreased kidney function over the last 12 months which had recovered ( they thought it was NSAIDs induced so had to stop them) but it has recently decreased again with the rheumatologist telling me I had ++ menstrual blood in my urine on testing ( I told him that wasn't possible because I'm post menopausal, I was puzzled that he should assume this) but he has told me without doing any other investigations that the blood is not significant and that I don't have lupus nephritis and is due to hypertension which I don't have because it is well controlled on a low dose bp med so again puzzling...🤔
The rheumatologist told me my Lupus probably won't get any worse than it is now but they told me that back in 2002 when I was still able to work and had a 'normal' life so yes everything has got much worse.!
I was wondering if anyone has had other tests for lupus for example ds DNA, Anti La, Anti smith antibodies, RF etc that have been negative but later changed to positive and can cutaneous Lupus progress to Systemic Lupus over time?
I've had a positive RF in the past but this time it was negative, the rheumatologist said these blood tests for Lupus that came back negative will stay negative!.
I wasn't overly keen on this rheumatologist, he had very little compassion, he was very abrupt, his 'bedside manner' was abysmal, when I walked in he didn't even look up from his computer to greet me he just grunted, which straight away made me feel inferior and as though he was disinterested!
Btw my Dad had 'Full blown' SLE so I have some experience in it and its always been in the back of my mind that it may develop, he passed away 16 years ago and knowledge/ understanding and tests have progressed since then.
Any help would be much appreciated.