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Anyone an expert on wee and visible white things in it/ or had similar please! 😬

Hello, I’ve just been in hospital for a lupus flare followed by a few days out then back in for a week with a kidney infection.

I’ve been so filled with drugs (pulse IV steroids, strong IV antibiotics and oral antibiotics) that I shouldn’t be having symptoms but I do - pain, rash, fever, extreme fatigue etc.

Trying to work out whether this is a lupus flare or the infection has started again or a mixture of both as it obviously is completely opposite in terms of treatment/ withdrawal of treatment and my GP wants me back in hospital which I just can’t face when I don’t think there’s anything they can do so thought some of you might have had similar please?

My urine was clear at the end of hospital and clear on my cystoscopy last thurs but yesterday was cloudy again with lots of white pieces floating in it. Does anyone know what these are please or what it means? I don’t think white blood cells would be visible? Pus? Epithelial cells?

Since October I’ve had very weird urine, sometimes complete blood, sometimes tests show lots of red and white cells, sometimes protein, sometimes epithelial cells, only once an infection. Urologist said could be inflammation from the lupus or damage from the methotrexate (rheumy says not) or could also be lupus kidney issues (aside from the kidney infection) but blood pressure low and blood results - except low phosphate and low complement - don’t show any sign of kidney involvement and think would be unusual to get kidney involvement so many years after having lupus and kidneys being ok (and dsDNA -ve which is often more related to kidneys)

Any ideas on any of it please or any one had white bits in urine and got some answers themselves as to the meaning?

Thank you! X

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Hey Melba - sorry to hear youve been through so much! Have to say, having had varying degrees of urine and kidney infections in the past, white things in your urine doesnt sound er great. I dont think youd be able to see white blood cells.... but then Im no doctor! I know you said your GP said back to hospital.. but why not just get up to A&E and have your urine tested now? Get some more meds to kick it? Do you have a temperature? Or I would call 111 and discuss..... theyre brilliant as used them tons over recent period post surgery... fantastic service. Please. Dont want it to get a hold again eh? They can put you onto a nurse to discuss or even get you up to A&E (they prob will). Best jump on it eh? Do let us know what happens. All the best x

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Meant to say - put it this way, Ive had things floating in my urine and was very unwell..... but not in hospital... just high temp, felt like back had been kicked in and was bed ridden/almost delirious... this was about 20yrs ago... and since that time, thankfully no visible bits in my tests... just blood etc when infection hit or generally. So - yes, please get someone to test it and get some advice to put your mind at rest - or meds if needed. Hope you much much better very soon x

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Yes thanks for the advice , do feel pretty rubbish but have had floating bits for a while on and off and not always felt rubbish during that time so not sure if connected.

Have left the urine to settle in its tube and 1/3 is just pure white sediment so must be something dodgy I suppose as clearly not normal?! 😬

GP said go to A&E if fever/ back pain worsens tonight or they’ll test tomorrow first thing so will try and wait until tomorrow. Feel such a burden on my poor rheumy and my last hospital stay was so awful (Drs were amazing but I was in acute emergency ward so constant beeping and choking etc all night and the other patients were terrible, shouting, swearing at the drs, even trying to smoke under their blankets 😱) that I’m sure the lack of sleep made the lupus worse!

Thank you - will be careful though as you’re right, definitely don’t want it to take hold again x

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Never a burden, they've missed something, and lack of sleep definitely makes things worse...🤞🤞🤞everything crossed they crack it this time XOX

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It could be a thrush infection. Anti biotics knocking out one part of your guts bugs can cause others to proliferate.

But agree with advice from djk99. Worth getting urine tested again.

Another thing I might do is heavily dose with vit c. But you would need to read up on that rather than just following my suggestion.

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Thanks, think probably not as no sign of thrush and it’s a lot to be that - also did a clean mid stream sample so should avoid contaminants - but it’s clearly something. Don’t have any burning though so presuming maybe just some inflammation in there somewhere as everything else seems to be inflamed!! X

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Could it be a dull old Candida infection has taken hold after all the meds and infection? I have yeast everywhere in excess - yup, everywhere - but it's something not tested for usually because it's present naturally in small amounts in most places...and I have pain, rash, fever, extreme fatigue when it's out of control.

Ah, more than half the body isn't human (https://www.bbc.co.uk/news/health-43674270) and sometimes infection can tip the balance in favour of 'other'

Wishing you all the very, very best after all you've been through the past few months, you're well and truly deserving of a break XOX 😍 🤗 🤩

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Thanks very much eekt. I didn’t know thrush would cause all the systemic issues - sorry you get all that. 🙁 I hate thrush but don’t think I have it as normally quite obvious and dermy tested me as I also have an autoimmune skin disease down there that can complicate things although she did say that immunocompromised, immune dysfunction (complex?! 🙄😂) patients can have all sorts of weird presentations and results not show what they would in a normal person.

Would be embarrassing to go to A&E and be told it’s thrush 🤣 Something to add to my convoluted records...

My husband was cracking up at a recent letter from a gynaecologist saying personal things about my cervix (although I was flattered because he called me young lady!) copied in to multiple of my specialists then abruptly stopped laughing and was thoroughly offended when the next part detailed that my husband has had a vasectomy - said how personal and why should everyone know 😂 Us chronically diseased get used to personal things on our records (at least this one was correct!).

Thanks very much, I’m normally quite lucky getting proper remission periods in between the rubbish but needing bigger drugs now these days - still glass half full eh as your GP likes?! Although my glass is currently half full of white bits...🤣

Xx

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Humor bone's ok! 😁 I even had yeast growth on my skin after a night at the sleep clinic, ugh (rubber sheets didn't help) 🙄 ...and produced a glass full from my mouth 🤢

Being called a young lady on the basis of a cervical investigation is something to be broadcast! 😁 XOX

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Oh poor you 😬

😂 ha ha well that’s put a different perspective on the reason for young lady - I’d thought it was because the swelling from my steroid face had smoothed the wrinkles! As my dad kindly told me in a comforting look at how full your glass is 🙄😂 Although I had no wrinkles at all with the kidney face swell but my eyes nearly disappeared within the balloon face 😱🤣 . Obviously rheumy noticed because he knows my normal face but the cheeky registrar said she thought my face was just naturally round and wrote no swelling 🙄 it was literally twice the size and friends/ family were either cracking up or horrified. Shows the importance of consistency in care for noticing these things. I’m looking forward to showing her my normal face one day!

Xx

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Ah, if only I'd thought of presenting the glass of grey-ish mass to the lead consultant...👺 you live and learn...like registrars' should...maybe a profile photo to add to your file when the moon face is history for consistency 😁

Heck, an internal fight with a lesser being I can destroy with mere garlic is nothing to your Waterloo: once more unto the breach! 💪 🤛 🤝 👌 XOX

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Hi M - sorry you’ve been flaring and had hospital stays.

I had an extended flare involving white bits, oily bits, always the haematuria plus extra bits and non existent bits - in the 7 week run up to Xmas.

Weirdly the upper abdo pain stopped abruptly on my last day of second course of antibiotics. The Gastro has written to GP suggesting chronic pancreatitis - which I had suggested myself having had acute pancreatitis from Aza nearly 4 years ago. This was misdiagnosed and treated as UTI sepsis - IV gent and Flucloxillin - only for me to get violent return of symptoms once I restarted Aza as instructed by rheum. Then they found raised amylase.

But my GPs recently assumed they had excluded this chronic pancreatitis due to my normal amylase. What they didn’t realise was that autoimmune pancreatitis will only ever be amylase negative as my gorgeous Gastro explained - which makes it extra hard to diagnose.

I’m having an ultrasound of upper ab and pelvis in 9 days to see. But as flare has settled down I’m guessing it will look normal.

The clue for me is that pain is so similar to acute pancreatitis, I always have lots of blood and protein in my pee when it flares as I did when hospitalised twice with acute - and oily deposits on pee when I flare plus lots of white scentless discharge coming from ...🤷🏼‍♀️

Sugary foods and alcohol seem to be a trigger as it started after my sister’s 50th end of October - which included bubbly and very carb and sugar laden high tea.

Bloods and swabs are totally negative for thrush in my case and I have no itching or burning just pure skin pain in entire pelvic, fahoola and groin area.

Until it stopped I was phoning 111 and downplaying upper abdo pain, trying desperately to any avoid hospital stays (ptsd following previous sepsis stays in old island hospital). Out of hours GPs thought it was a mix of my reflux and rip roaring upper UTI. I’m not so sure?

Problem is I don’t get the burning as warning and neuropathy means I’m always in a state of confusion about everything from top to toe. Never mind facial/ mouth and eye pain always flares at same time as pelvis and abdo?!

Just seen my GP and she agreed that I need a good moisturiser for lady parts as swathing in coconut oil as I’m doing is unsustainably expensive and.. well it melts everywhere so dogs follow me licking up the messy trail of coconut deposits - no wonder they are getting so fat lol! She and student did laugh at this and she has given me something the gynaecologist has recommended by letter at an earlier patient appointment.

I did say that my Fahoola (a nickname used for vagina in the wonderful new movie The Favourite - what’s good enough for Olivia Coleman as Queen Ann..!) is very swollen as well so she’s upped my vagifem to one a day for 2 weeks for the oestrogen.

No gynaecologist referral as I’m already seeing optician, CTD rheum, ENT, pain clinic consultant, dental surgeon, Gastro and OT and neuro physio all in the next month. She thinks that this new moisturiser, Regelle, should do the job better than other OTC ones as someone else’s gynaecologist has recommended it!

I’m telling you all this just in case any of it helps somehow as we are both seronegative and therefore even less likely to be understood by new A&E doctors who don’t know our complex and rare disease history.

Also I’m very keen to avoid any A&E visits at all costs and I hope you can too. Xx

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Sorry twitchy, thanks for the detailed response, must have missed it, did unfortunately end up in hospital 🙄 Still here but had lots of IV steroids and everything’s much better. Had rituximab yesterday too. Still no answers on weird wee but no blood or anything tangible but still white sediment.

They don’t count me as seronegative (means ANA negative in lupus and mine is intermittently positive ) but sometimes my ANA is negative when I’m really flaring and yes you’re right, some just don’t get it.

The best quote I had was from a consultant who said you’ve got a rare complicated form of a rare complicated disease so things are... complicated! This applies even more to you 😬

Xx

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Oh dear Melba I’m sorry that you’ve landed up still in hospital. Weird that they haven’t got to the bottom of white bits in your pee?

I only assumed you were classed as seronegative because my rheum no.2 said ONLY people with ANA and anti dsDNA can have Lupus. He was a rigid thinker though and he undiagnosed my RA due to my rheumy no.1 not writing which of my finger joints were hot and swollen on diagnosis.

When I moved on after a year I wrote to him saying that rheumy no.1 was a cautious man (he told me that he had accosted rheum 1 about my diagnosis at a conference!) and that I really didn’t think it was appropriate to accuse a colleague in a different Scottish hospital of misdiagnosing me and putting me on Methotrexate with Hydroxy on whim?!

Neither of them appeared to have a clue about Sjögren’s I have to say. And I’m glad that your rheum is more of the type we need in this world. With my no.2 rheum running things we would both still both be drifting about in some sad underworld. As rheum no.1 used to say often - rheumatology is a very inexact science and the names we give these diseases were merely described for expedience by a group of rheumatologists travelling to a conference together!

Fingers crossed for the Rituximab X

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Thanks twitchy, that’s not just rigid thinking from your rheumy no 2, that’s a basic (but unfortunately common) misunderstanding. 30-40% of people with lupus will never be dsDNA positive but if you are you almost certainly have lupus. Not really that hard surely for medical professionals to understand but they do keep getting it wrong!

Ah the politics when they disagree too 😬

Yes I’m hoping to get some answers on my weird wee. I’m presuming now it’s totally clear from blood and white cells after the treatment that it was inflammation but feel a bit like your ‘unwanted parcel’ comment that everyone wants someone else to take responsibility. Not sure I’ll get a clear answer but if the whole lupus attack, including there, gets better on the treatment then I suppose the answer and cause is less important? You and I like the answers though! But think it annoys my rheumy when I ask lots of questions so have to balance it..

X

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Am so sad you’re going through this melba...you’ve got great replies...so feel there is little i can add....but for what it’s worth:

during my decades of persistence pattern sudden severe onset urinary tract infections + pyelonephritis i always had WBC (for me these showed as leukocytes on urinalysis strips) floating around highly visible in my pee...alongside blood etc...my urology surgeon explained these WBC were pus aka pyuria & flesh in my case...as soon as immunology diagnosed my version of PID & added “infectious urinary tract disease” due to chronic persistent pockets of bacteria driven sepsis in my urinary tract to my official listing of documented diagnoses & put me on daily coamoxiclav forever my pee became clear...maybe this link can be useful:

en.m.wikipedia.org/wiki/Pyuria

Hoping you & your medics figure this out soon...feeling very concerned about you dear melba

🍀❤️🍀❤️🍀❤️ Coco

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Ah thanks lovely coco, please don’t be concerned, I’m a tough old cookie 🍪 really - or at least my body used to be 🙄

Yes I think you and I have a lot of similarities with some of our health problems although my PID turned out not to be one after all! My complement was so low and for so long that your lovely immunology chief was sure it couldn’t be a lupus flare that bad and long so must be a complement deficiency but then I had it measured in remission and it was normal. Which means it gets low from activation due to the lupus attacks - a very useful marker and very low again 😬

My problem if I can’t shift this infection is that I can’t have the planned rituximab when infected or restart the methotrexate so bit worried how the lupus will feel about that! Probably be delighted and run riot 🙄

I’m seeing my favourite GP early tomorrow, even when she doesn’t know what to do she’s always lovely and sympathetic but expect it will be back to poor overburdened rheumy to sort me out 😬 I had told him I would leave him in peace for a bit... 🙄😂 xx

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😧 OMG: your gang of True Detective 👨🏽‍⚕️👩🏼‍⚕️s have been working hard on your case: THANKS‼️ Am SO GLAD they’re figuring the complement deficiency out...but GRRRRRR: am so sorry the severe persistent infection is roadblocking immunosuppression - a simultaneous SLE/PID buddy of mine had this situation for a year or more...finally got back on ritux for awhile, but something weird is flaring now so the 🕵🏻‍♀️🕵🏼‍♂️s are on her case yet again. Does this immune dysfunction thing ever stop throwing us curve balls? So Glad your here dear melba...i hope this wonderful thread helps 🌟 you tough this out

😏 🥰🤞✌️

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White floaty bits? Do they look a little like soft limescale or peeling sunburnt skin? Anything a bit like that?

If thats the case it could be the old skin shedding away from the infected area within the bladder to allow new skin to grow from underneath. I've seen this myself on my own cystoscopy. It could also be visible puss cells that are more long and stringy. It won't look anything like vaginal discharge or thrush.

Some antibiotics can also cause cloudy urine. What antibiotics did you have IV and what did they send you home on?

Unfortunately I can really related to this situation. I was admitted with a kidney infection in October. Had IV co-amox but that wasnt strong enough so had to have IV Gent which fuelled my lupus 100%. It made me feel so awful I couldn't move or roll over in bed.

When they sent me home my urine was clear but the infection soon returned. I suspect we were in the same hospital if not the same ward!! Who knows.

Bottom line with me is that I actually had really good inpatient care but it transpired that I didn't have the antibiotics for long enough. I need a very long course and have just finished 12 weeks of antibiotics. They made me feel so rough, sorry but I'm going to say it as is it. It fuelled my lupus symptoms and gave me brain fog like pea soup.

I think if you have debris or blood in your urine, pain and temp then you should return to A&E or get more antibiotics. At least that is what I was told. I now regularly test my urine at home and have a rescue pack of abx at the ready.

Only you know what to do but to my knowledge there are no NICE guidelines about how to treat kidney infections in an immune compromised patient.

If I am correct, you have POTs?? If that is the case then insist on getting your observations done standing up because it will be the only way to give an accurate reading of your BP and heart rate.

Again, that is what I was told. Laying down I was fine as my BP and heart rate are chemically managed but when I stood up and had my BP and pulse rate done, along with resps and temp I triggered the treatment for sepsis.

Don't ignore the signs of an infection if you've already been in and had IVabx. You were obviously very unwell and going into hospital is awful but better that you get treated than leave it until you are worse. That IV pred will stick around in your system for a while so you'll need all the help you can get to fight it if it has returned.

My heart goes out to you if you are going through anything like I have since October .

Please look after yourself and let us know how you are doing.

HT xx

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Oh golly yes does sound very similar, poor you I’ve seen you’ve had a terrible time of it 🙁 Are you improving a bit?

Yes they started me on the sepsis protocol as I was quite ill and have had sepsis before so had IV gent for 5 days, a couple days of pred whilst I was vomiting followed by another high dose oral antibiotic then a big dose of gent injection before the cystoscopy so I just can’t see how any bacteria could have survived that onslaught?! I think maybe the cystoscopy reintroduced the infection?

That’s interesting you reflared from the antibiotics too. I wasn’t sure if mine had flared from that or the infection itself or the fact my rheumy insisted on stopping methotrexate for a few weeks? My lupus feels awful but the rheumy registrar (who was very clueless especially regarding the autonomic issues) said no way could the lupus be active as I’d only recently had the IV pred - and I’m a great pred responder. Very hard to tell what’s infection and what’s lupus though which was my problem initially with the infection as we all just presumed the fever, pain, fatigue etc was lupus until my face swelled up and I got really ill. Bit annoying my GPs sat on a bad bacterial result for 2 weeks over Christmas and didn’t inform an immunocompromised patient. When I went in feeling awful, the GP said yes you would feel awful as you’ve had an untreated UTI for 2 weeks - that had turned into pyelonephritis 🙄

That’s a good tip re the PoTs, mine has been dreadful lately. Does yours get worse with infection etc? I’m still working it all out... My husband kept telling them to take my obs sitting and standing but it didn’t really happen and no one really gets it. On the first day my lying BP was 90 but even on sitting it went straight up to 140. Every time I stood up or tried to eat I’d get all sweaty, clammy, dizzy and have to lie on the floor 🙄

The drs were brilliant and rheumy, urology and acute care team all worked very well together but the patients were awful this time - swearing, shouting, teles blaring all night and saying F off to the nurses if they tried to quiten them. One even got caught smoking under her blanket 😱😬 I’m normally on a lovely peaceful rheumy ward but was too acutely sick this time. I will beg my rheumy to put me there if I’m readmitted.

Oh that would have been nice (well obviously not nice as we were both so sick but would have been nice to meet you!) if we were in the same hospital but I always go to A and E at Royal Free now as they’re so slick and my rheumy always comes to meet me there or sends a rheumy registrar to stay with me so there’s no confusion amongst jnr drs about dealing with lupus. And he comes to see me every day and because he knows so me so well (from multiple admissions and every few weeks clinic poor chap!) he says he can spot very quickly any changes/ problems physically or brain wise and quickly organises everyone which makes me feel in very safe hands. What do they do at your hospital? Does your rheumy organise that kind of thing or leave to the ward drs?

Thanks very much for the advice, I think the fact I feel quite ill, sick again which isn’t a normal lupus thing for me and the white sediment is about half way up a test tube now - looks like pieces in a snow globe? - I will probably have to brave A and E as I think you’re right that probably need IV again 😬🙁

Lots of love to you too xx

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Another thing I have thought of is take extra care with your diet at the moment. Sweet or sugary foodstuffs feed bad bacteria. But carbohydrates break down into sugars so bread and potatoes/pasta etc could promote bad bug growth as well.

Lemon water in the morning or through the day might help. And garlic.

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Hmm yes good point. Unfortunately when I feel ill especially when the lupus is bad, I tend to go for sugar and crisps - will try harder! X

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You may well need more abx to help clear this from your body. The other danger though is too many abx can build drug resistant bacterias that end up even more dangerous.

But at the moment you have to reestablish some control.

I hope you manage that speedily to minimize further problems. Wishing you well.

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I have nothing to add except that I feel worried about your health. I know the hospital is a hard place to have to be, but sometimes it is where you can best be monitored and cared for. I think it is best not to try to guess whether it is an infection or lupus activity that is causing your symptoms. That is a hard one for your doctors. In no way are you a burden to anyone! A sick patient is cause for concern and the reason your doctors studied so long. Hoping you can get some answers soon and avoid going to the hospital. You have to be the priority right now! K

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Thanks! I was wondering why you were awake in the night too but remembered you’re in America!

Yes, I think you’re right about not keeping trying to work out if it’s the lupus or the infection (I suspect both combined) and I do very much trust my lovely rheumy so will hand myself back to him tomorrow if no improvement - and the fact my kidneys really hurt again, my legs won’t work and I’m vomiting again is probably a bit of a sign 😬

Thanks for the advice x

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I feel better now! I worked in a hospital for seventeen years and I never — and I mean never — heard a doctor complain about a sick patient being a burden. It is understood that patients come first. Yes, it is early here. I hope you get a good night’s 💤. Let us know what your rheumatologist says. K

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Hi so sorry to hear you have been so unwell. I too like you have problems with my kidneys. You definitely need some medical advice and why not try cutting out salt, processed foods, sugar and anything processed and drink 2 litres of mineral water a day. It’s the only thing that made me feel much better. Get your Drs to review your medication an please let us know as I have problems with my pee that is always present to some degree or other. Try seeing a herbalist and a nutritionist too. I hope you feel much better soon.

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Yes thanks, will do. I definitely haven’t been drinking enough. Just felt too ill yesterday to get drinks too. My children are very good but obviously out all day at school so will get lots of drinks from them first. I was told to eat lots of salt (which I chose to take to mean mainly crisps because I’m a crisp monster 😬😂) for the autonomic problems but clearly not good for kidneys.

Thanks very much for the advice x

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The doctors will watch the effects of the salt. Do you have a blood pressure cuff at home? Also, I could not get enough salt in through diet but discovered Saltsticks, which are new coated salt tablets. This way you can ask your doctors exactly how many of the tablets to take. And ask if you should be monitoring your blood pressure at home. You have to drink a certain amount of fluids for the salt to help. I drink two liters a day. K

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How are you doing today??x

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Thanks so much for all the advice everyone (and the gentle shove to go to the drs!). GP sent me straight back to hospital, the white bits still not identified but blood too so may be end of infection or kidneys affected but general big lupus flare . Dodgy few days but constant drip and IV steroids already working quickly and awaiting inpatient rituximab. Fortunately I like hospital sponge puddings... 🐷😂

Thanks again - so helpful to get everyone’s views and help on here 🙂 x

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