So confused and frustrated

[Tulipano]

Hello everyone,

My blood test results were positive (srp antibodies and cq1 and slightly positive ana) so the consultant decided to do a kidney biopsy and emg test. The emg test was normal and the muscle biopsy almost normal. 🤔 the consultant looked confused and unsure. She said that everything points to lupus but can't say it for sure. Plus I always have blood in my urine but ct scan shows normal kidney fuction. I Am feeling so down and frustrated. I feel like giving up going to hospital appointment and lying in bed all day. The consultant in the end wants me to start steroids and immunesopressant and review me in 4 weeks. If in 4 weeks time while I am on medication I still have blood in my urine then they may consider kidney biopsy. 😭

[Lupiknits]

A special LK hug for you x

[Fennella02]

Poor you. If your muscle biopsy was almost normal then something still isn't quite right with it? Presumably trying to rule out myosotis etc? Is your CK raised? Perhaps you have some overlap of auto immune disease which is why it isn't clear?

It is very frustrating when you're trying to get to the bottom of things - especially if you're feeling rubbish too. Sorry I can't be more help but lying in bed all day when it's cold outside isn't such a terrible thing . . . 😊😊😊

[Tulipano in reply to Fennella02]

My ck was normal 😭

[Hidden]

I have blood in my urine for many years and no one ever told me or suggested it might be kidney related. My CK is normal and eGFR is always at the lower end of normal range. My creatinine is usually elevated but apparently this goes with my disease, Sjögren’s.

My BP swings about but is usually too high and I’m on a BP med but no one ever refers to this as a problem relating to my autoimmunity. However I am on the highest dose of a kidney disease immune-suppressant for my arthralgia/ inflammation so I have wondered if they think I have early stage kidney disease.

I was previously diagnosed with RA but this changed to Sjögren’s last year. I’m guessing that the +2 microscopic haematuria relates to my hypertension and after a year on Mycophenolate it’s been clear now for a few months and my BP had been normal too - so I’m guessing these go together. When I ask they just shrug and say it’s not important - only protein in pee is what they go by.

The thing is that so many of these autoimmune diseases overlap and microscopic haematuria is quite common even in healthy people a urologist told me - same as +ANA. So the most important thing is that you are taken seriously and started on medication - the name can change over time - things are rarely cut and dry with Rheumatology.

So please don’t give up seeing doctors just because you don’t have a name for your autoimmunity. The consultant wouldn’t give you Prednisolone or consider an immunesuppressant unless they felt convinced that something was amiss.

[Hidden]

Hi,

I don't know what your symptoms are but have they ruled out Urticarial Vasculitis? There are three different types, 2 of which can be associated with low C1q antibodies and elevated anti C1q antibodies ( HUV and HUVS ). They can present with very Lupus like symptoms and are rare.