I am new on here. I have been seeing the Rheumatologist since 2013 without a proper DX.
My problems started in 2011, aching all overplus generally feeling unwell, gradually got really stiff and was in really bad pain.
I went to GP, thought it was polymyralga rhumatica, he did blood test ERS was 100 so he put me on 15mg of Prednisone which worked great felt back to normal self.
He he tried to reduce them down gradually, as you do for polymyralga rhumatica, but ever time he did ers went back up,symptoms came back, hence referral to Rheumatologist.
Rheumatologist wasn't convinced it was polymyralga rhumatica and started to slowly take me off steroids to do pet scan.
In the mean time, October 2013 when abroad on holiday, while I was there feel really exhausted, my legs feel like lead and was very breathless and generally felt really unwell and achy. The day before we went I had had a flu jab, I thought it was that, that had caused. When I got home still felt the same, so thought it was virus. It didn't go away so I went to GP.
She did x-ray ECG both normal, she to thought it was virus. This went on till may then saw Rheumatologist who didn't really know what was going on, just thought it was because he was lowering steroids.
July 2013 had petscan, it showed inflammation in shoulder joints and hips. Rheumatologist wrote to me saying in shoulders was some consistencies with polymyralga rhumatica my hips thought it was a form of arthritis, but I have never had a firm DX.
I test positive for an auto immune disease, but still I have not been DX with which one??????
I also keep having abnormal kidney readings, during the episode October to may it showed I had chronic kidney disease stage 3, then further test show recovery. Then they come back bad again.
Anyway to cut very long story short since the episode on holiday, I have had vary symptoms, which are intermittent. I might go weeks, even month, with just a bit of stiffness and aching but then something flares up. I get really fatigued, stiff, achy, joint pain, hot flashes, and numbness and pins an needles in hands along with mild temperature, (my normal is 97.6 degrees, goes up to 99.8). It always seems to start when we are abroad. It can start off mild while we are there, then when we get home it is worse.
I am not on steroids at the moment just arcoixa (non steroid), which help when I am going through a bad spell.
I have thought for a while it could be lupus, is there anyone on here that thinks the same????