Reoccurring urine infection : I have been getting... - LUPUS UK

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Reoccurring urine infection

stephaniejpm profile image
20 Replies

I have been getting loads of urine infections recently, around 1 every month at the moment! Was wondering if this was the case with any one else with lupus ?

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stephaniejpm profile image
stephaniejpm
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20 Replies
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi stephaniejpm ,

Are you on any immunosuppressant treatment for your lupus?

stephaniejpm profile image
stephaniejpm in reply to Paul_Howard

No not taking any medication at the moment so pretty confused

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to stephaniejpm

Some people with lupus can have a compromised immune system if it attacks their neutrophils. Do you know whether you have a low white blood cell count?

There are some tips for preventing urine infections on the NHS Choices website here which you may find helpful - nhs.uk/conditions/urinary-t...

stephaniejpm profile image
stephaniejpm in reply to Paul_Howard

I had a full blood count and it came back clear still waiting to see a rheumatologist

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to stephaniejpm

Let us know how you get on when you see the rheumatologist.

Freckle1000 profile image
Freckle1000 in reply to stephaniejpm

Ask for a specific Lymphocyte test.

Might not be included in a full blood count ??? Not sure. From Australia - you might do things differently there.

Looking at your Lymphocytes specifically will help give a more accurate idea of what your white blood cells are doing. Make sure your GP also checks for patterns regarding drops or spikes - no matter how small - in all the forms of white (and red) blood cells.

PMRpro profile image
PMRpro in reply to Freckle1000

A full blood count includes a total white cell count and should include a "differential count", the proportion of each sort of white cell present. And while they do the "diff" they look at the shapes of the cells for abnormalities.

Freckle1000 profile image
Freckle1000 in reply to PMRpro

Yep. Its really hard for me to comment - its reasonable to assume that our pathology system is different. Here - if you tell them to do it..... they can take a closer and more accurate look at the lymphocytes alone. For me its important as mine's dropping a little.

Its also become obvious that there's a two tier system where more expensive pathology testing can be conducted that shows a more accurate picture of what the ANA's etc are doing. (My GP was a little startled at the difference between two recent ANA tests tested around the same time - one done publicly that registered a lower ANA, one with the more expensive company - the ANA was higher - Not profoundly so - up 20 to 30. (Cant remember the exact spike) Of course I could have just be flaring a little more that day - but the GP did say it was the better - more accurate test. I'm looking at the bill for it on my desk right now.

What was once an pretty good egalitarian and fair medical system here, is fast turning into better medicine for the rich and sub standard care for the poor.

This happened when the government asked wealthier people to take up private health insurance to alleviate financial pressure on the public system. But over time this has slithered downwards the point where unless you have private health insurance, you have little chance of gaining a Doctors attention 'at all' or -obtaining the more expensive pathology.

Where becoming more and more like the USA every day here and its a little terrifying.

PMRpro profile image
PMRpro in reply to Freckle1000

That is actually what the "diff" does. Having got a total white cell count, you then make a smear of the blood sample on a glass slide and stain it - and then count x cells in total, with a record of how many are lymphocytes, how many neutrophils, basophils, monocytes and eosinophils.

And you get a result like this:

"Reference ranges for differential white blood cell count in normal adults is as follows:

Neutrophils - 2.0–7.0×10 9/l (40–80%)

Lymphocytes - 1.0–3.0×10 9/l (20–40%)

Monocytes - 0.2–1.0×10 9/l (2–10%)

Eosinophils - 0.02–0.5×10 9/l (1–6%)

Basophils - 0.02–0.1×10 9/l (< 1–2%)"

Freckle1000 profile image
Freckle1000 in reply to PMRpro

Thank you for explaining that PRMpro.

I'm assuming/hoping these elements are looked at behind the scenes with a full blood count here.

Unfortunately we're not provided with a read out of these differentials. Just a basic number for white blood cells.

This will be something i'll definitely be asking my specialist here.

Many many many thanks.

PMRpro profile image
PMRpro in reply to Freckle1000

In Europe it has to be requested as "FBC and differential" - but that would happen as soon as a abnormal WBC was flagged or if there was cause, just to be sure. I'd like to think in the UK the doctor would automatically request both for a lupus patient.

Have you ever asked? Most UK patients wouldn't be handed their results without asking for them.

Freckle1000 profile image
Freckle1000 in reply to PMRpro

Yep. I get the results instantly printed if I ask for them. (greater difficulties with specialists letters) Have to get a freedom of information forms for those - even though I have a right to instant access to these too - I believe its more polite for the GP in relation to the specialists - and visa versa.

Its actually becoming a bit shocking - but I've never seen the term 'differential' on any FBC test. I believe this aspect must be requested by the Doctor. I've taken a photo of the list you posted to take with me to a specialist on Monday. I've never seen the last three differentials listed on any of my pathology tests over the past 13 years of asking for hard copies - and I have rampant, agresssive SLE with a history of - immune crash.

I'm beginning to think I'm living in the third world.

PMRpro profile image
PMRpro in reply to Freckle1000

Have you not requested to be cc'd consultant's letters? It is possible. Then you can see if you were at the same consultation as he was ;-)

Here's some reading:

labtestsonline.org.uk/under...

Freckle1000 profile image
Freckle1000 in reply to PMRpro

Ha.

Very nice. I'll take a look.

: )

Freckle1000 profile image
Freckle1000 in reply to PMRpro

Again - Thank you very for that link. It will take a bit of study to compare and contrast your pathology system to ours.

And yes.....I have requested copies of consultants letters.

I've recently found out that I've been sent 'amended' version of some specialists letters.

Its a tough system to crack without being a tad aggressive about it - and of course they're very touchy when I do this. Not inclined to be open or transparent. They seem to consider their letters 'private' and me wanting to see them as a profound violation of this - and I don't blame them -

When I do a random raid on my medical file - usually due to lack of response to new symptoms - I find a lot of - moronic pondering's that seem to feed off one another and turn into a spectacular sociological nightmare - as apposed to what they're paid for......an objective and active effort to find an answer.

Poor them.

PMRpro profile image
PMRpro

Have you had the infections confirmed by urine culture? Have you been on antibiotics?

stephaniejpm profile image
stephaniejpm in reply to PMRpro

Yes most times I have gone to the doctors and they’ve confirmed it and put me on antibiotics, just getting a bit fed up of it

PMRpro profile image
PMRpro in reply to stephaniejpm

Confirmed by sending urine to the lab? Takes about 3 days. Not just a dipstick done at the practice - that just sort of "confirms" but isn't accurate.

Recurrences at that sort of frequency are often as sign that the previous infection wasn't fully cleared out - not enough of the correct antibiotic or not long enough. Often long term abx treatment is used - over months.

However, there are other more mechanical causes of the problem and any woman who has had repeated UTIs should be referred to urology for investigation. Not least because if the infection travels backwards to the kidneys it can cause trouble.

I would tell my GP that is what I wished - and if they don't listen, tell your lupus consultant.

Ianrussell69 profile image
Ianrussell69

Types I get them a lot if I dehydrate I get an infection I’m on hydroxy and methatrexate although the methatrexate has deep temp stopped due to bad infections please be cearful last year I had a particularly bad infection witch gave me sepcis and a 6day stay in hospital ,!

tiredmum profile image
tiredmum

I too get a lot of urine infections, I spoke to my rheum and he said it was because I was on immunosuppressants. He referred me to a urologist who then put me on 50mg of nitrofurantoin for 3 months. This helped for a while but the infections are starting to reoccur again so will probably have to have another course .

Speak to your doctor to ask for a referral to the urologist.

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