LUPUS

[1STEP]

Hi, I am new to this group. I have had low Thyroid, B12, Microvascular Angina (Arteries and heart clear) Chronic Urticaria, Angiodema and Fibromyalgia diagnosis since my first symptoms in 2009. I have also had the same feeling of needing to take a deep breath at times, but feeling as though I cannot expand my lungs enough since then. This last month my oxygen saturation levels have been sitting around 92-95% and just this week following numerous blood tests have had a positive dsDNA test so they have added Lupus to my list and urgent referral back to Rheumatology as the high level is suggestive of Lupus Nephritis. I had the red mark across my cheeks since 2009 so possibly had Lupus for a while. I wonder if it has been Lupus affecting my organs all along.

[Spanielmadlady]

Hi and welcome.the only way to be certain about lupus nephritis is to have a kidney biopsy. some 60% of lupies have kidney involvement without knowing it as there are few signs and symptoms so damage is done before its detected.lupus affects organs with connective tissue so heart,lungs,kidneys and brain.i had a biopsy in 2018 and was diagnosed with class 5 LN .Rheumatology don't look after my kidneys a nephrologist does and I'm currently on 6 monthly checks.i also have lung and heart issues .kind regards SML xx

[1STEP in reply to Spanielmadlady]

Thank you, my GP consulted Rheumatology and they replied asking her to send an urgent referral. My dsDNA was 32iu/ml with Normal 10 I would imagine I will have to have further tests. The annoying thing is all the medication including Lyrica that I taken for over a decade that hardly work, and each time I have had steroids I am a different person. I have almost begged to be taken off Lyrica and put on low dose steroids to no avail.

[Spanielmadlady in reply to 1STEP]

Join the club I've been steroid dependent for 8 years and everytime I reduce them down to my maintainace dose of 7mgs my lungs flare yet they still want me lower and preferably off.it is very very hard to get them to leave you on a low dose .whilst steroids are a fantastic drug they are also a dangerous one.i take lyrica (pregablin) for nerve pain the steroids are for inflammation so they may give you an immunosuppressant. X