Yesterday I had my monthly bloods done despite no longer being on MMF. Due to my own private renal worries re the tremors and twitches and sporadic pain in back since stopping MMF, I took in a pee sample with me. My favourite nurse, who calls herself “the Vampire” on my appointment stickers - found trace blood etc and sent it off to the hospital.
After another day and night of enormous thirst and huge amount of pee (almost looks like water?) - I got myself an urgent apt today with GP man - who is my named GP. I like him simply because he was kind to me about bowels/ IBS-c and now uses my Christian name and looks me straight in the eye without making me feel like I’m just a person with heightened health awareness or an ordinary everyday patient suffering from just this or that
He immediately said lab report is back and I need antibiotics for probable UTI. He said my bloods are same as usual ie some inflammation, eGFR same as usual ie gt 60 but my pee sample is “very mucky indeed” - not just trace blood but proteins too - which indicates a UTI further top of my urinary tract/ kidneys - hence some back and pelvic burning pain I’m guessing - “all absolutely in keeping with your Sjögren’s Disease”.
Then we discussed possible Diabetes Insipidus and likely renal involvement.
I explained these are now my main concern. He agreed that I have renal issues but said it all goes hand in hand with Sjögren’s/ CTD and is much more likely to be a recurring UTI with very mild CKD. He says people with Diabetes Insipidus literally drink gallons whereas I only drink pints! I did read an Oxford Rheumatology article which confirmed that up to 50% of Sjögren’s patients have Diabetes Insipidus but I kept this to myself!
He said that, re me seeing Dr P privately last year - on the whole this was probably helpful because she’s a Sjögren’s expert. But he added that she has recommended some unorthodox treatments in her letter and “reading between the lines here”, some of what she said and my decision to see her has provoked annoyance (I think he means nasty neuro) and he does feel that I have an excellent NHS rheum so hopes it’s her I will see again in six weeks time.
He said “we do need one consultant overseeing your complex CTD - and Sjögren’s is invariably very complex and we need to be guided by the expert. Sometimes normal problems occur such as a cold or fungal infection or chest infection - but often these are actually part of Sjögren’s with you and that’s been hard for me and my colleagues to fully grasp . Of course this means you find new symptoms a worry - it would be abnormal not to feel worried l!” He went on to say how little is really known about this disease - or even other CTDs that have been better researched and understood such as Lupus. Even the specialists are often forced to experiment and use unlicensed drugs, baffling GPs.
He could see my tremor in hands - which I described as mostly internal. I asked if antibiotics might settle it if UTI is the cause - he thought unlikely if part of my longstanding neurological problems but possible if UTI is as severe as my pee sample indicates. I showed him the ambulence report from Friday night and he pointed out that my temperature was raised and pulse very high, furthering his suspicions of some infection.
I admit I like this chap - and not just for being prepared to say “Sjögren’s” to me multiple times!!
And unlike my wonder GP he works there full time so is more accessible. So I’ve now got 2 good GPs and a good rheum.
He is referring me back to ENT - this time for clarity over longstanding dizziness and vertigo. He accepts that viral labynthitis might have been an acute aspect of infection but I’ve had this underlying dizziness for over a year now - maybe longer. This needs investigating as a possible autoimmune ear condition relating to my Sjögren’s he feels.
As I left his room, thanking him greatly for not just treating one body part or system and for respecting the impact this disease is having on me - I did what I always do and stopped in my tracks. He looked at me and signed towards the nearby waiting room with his hands and exit saying “it’s that way you need to go”.
A small thing and a bit embarrassing because I feel thick and try not to let people see. But his noticing my ongoing problem was significant to me because I have never yet mentioned my spatial issues or inability to navigate interiors by memory, without clear signage. Hence why “popping” to toilets while out often leads to texts from my hubby saying “are you lost in basement somewhere or have you expired?”!!!
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