UTI Non-treatment ?: Hi, Has anyone else come... - LUPUS UK

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UTI Non-treatment ?

Riverbird profile image
8 Replies

Hi,

Has anyone else come across non-treatment for microscopic UTI?

I have urine tests every time I attend for my Lupus out-patient appointment and every time it shows up as having a UTI. The result gets sent to my surgery and each time a GP from the practice phones me to ask why I had it done and if I have symptoms, and then says that if I do not, they do not treat it in menopausal women as it is a common occurrence. I do have very mild symptoms but would not normally bother my GP with it. This has been going on for over a year, and I am just wondering if it is safe to go on leaving this untreated, bearing in mind possibly kidney problems with SLE.

Has anyone else come across this ?

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Riverbird profile image
Riverbird
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8 Replies
HermioneG profile image
HermioneG

I am post menopausal and have had several instances of UTI's with none of the typical symptoms, only feeling more tired than usual, some cramps a bit like pre period ones and going a bit more often than usual. I'd be hopping mad if it wasn't treated and my doc doesn't hesitate so I suppose that is the correct thing to do.

I keep a specimen bottle and have a test order ready made out, so if ever I suspect something is amiss I can get it down to doc's by 9.30 to be sent to hospital lab. My GP is 10 mins walk away but hospital is 20 mins bus then long walk to hand in at the lab. I have a very high opinion of my GP's caring, knowledge and carefulness.

I have read that it is important to treat UTI's because the infection can go up to the kidneys. Even if that isn't true, why put up with feeling any worse than one has to?

If mine didn't respond to a few days amoxycilline I would have to wonder what else might be causing my symptoms. By the way, it's important for people with SLE to avoid the 'sulfa' antibiotics like Bactrin which can make lupus worse so get that on your notes if you haven't already.

Hermione

tracynoe profile image
tracynoe

Did you watch the food hospital on channel 4 last night they covered this subject and used diet to help someone with recurrent UTI's well worth watching

Jennie_103 profile image
Jennie_103

I ignored a UTI and ended up with a kidney infection in A&E...

They do ignore them in healthy women as they will fight it and it will go away by itself, but I think with an SLE patient they should treat it especially if it keeps happening. It is usually only 3 days trimethoprim 200mg twice daily to treat so nothing dreadful.

Have you told the Lupus outpatient people that your GPs don't treat it? They are the experts after all.

Jennie

mstr profile image
mstr

Hi Ted, thanks for the above information which I plan to read. Riverbird UTI's are indeed a hindrance and I can't believe that you have not been treated by your surgery. I have been married for 27 years and have never had UTI's until the past few months when I have had three. My GP prescribed trimthoprim on a three day course. My dilemma is that he said that I had white cell casts in my urine and that the sample would be sent off. When I phoned back a week later the sample had failed to be sent to the laboratory. I guess I'm thinking that I think with lupus/CTD we need to be vigilant ourselves to what can happen if the kidneys are affected through to treatment not occurring soon enough. I guess for the first time in my life I am actually also taking responsibility for my own health and following things like this through. An interesting discussion. Thanks

Riverbird profile image
Riverbird

A very big thank you to everyone for their responses. A lot of information and opinions that are most helpful. Am going to read TedHutchinsons links and decide what to do about it. Once again grateful to everyone.

Thanks for all this information, Ted (and thanks for offering to sell people Vitamin D3 so cheaply on your blog).

I suspect that you don't actually have lupus, though - and because of that, I would just like to URGE other SLE sufferers to be careful.

I do have lupus, and like a lot of us I have been desperate to find out what causes it, and what I can do to mitigate the symptoms and get back something of my previously healthy and active life. I read about the role and benefits of Vitamin D3 sometime ago and began taking it as a supplement, initially in large doses, and later on in smaller ones. There is absolutely no doubt that this:

A) made me feel much better in myself; as a lupus sufferer, it is EVEN EASIER to be deficient in vitamin D, and this can affect mood profoundly, and

B) put an end to the very severe bone pain I had been suffering for quite some time.

However, recent evidence from the medical journals is not quite so unequivocal as your post suggests, and it is certainly FAR too early to see this as some kind of miraculous cure-all.

My personal experience - which is the only capacity in which I write, as I am not a (medical) doctor, should alert people to the great need for caution.

I had been taking vitamin D3 for many months when I first went to the surgery (August before last) with a UTI. I was treated with antibiotics - all the GPs at my surgery know I have lupus and were keen to stress the importance of looking after my kidneys. A couple of months later, I had another, and in January a routine urine test at a Rheumatologist appointment showed I had yet another. All were treated with antibiotics and all this time I continued to take vitamin D3 (along with a separate dose of calcium, which is very important) at 1000iu/perday as a maintenance dose. I was also taking MTX and 15mg of prednisolone.

In March this year, I was admitted to hospital as an emergency with kidney failure as a result of lupus nephritis (class iv), and have spent the Summer having infusions of cyclophosphamide as a result. Not pleasant.

I am not suggesting that vitamin D is not important. IT IS VERY IMPORTANT AND I STILL TAKE IT AONG WITH A LARGE DOSE OF CALCIUM. AT THE VERY LEAST IT IS IMPORTANT FOR BONE HEALTH IN LUPUS SUFFERERS WHO TAKE STEROIDS, AND I WOULD CERTAINLY RECOMMEND FOR DEPRESSION.

HOWEVER, I AM suggesting that people with lupus need to be really cautious about the extent of the benefits they may get from vitamin D3. There is evidence that people with lupus have lower vitamin D levels, and that even after treatment with Vitamin D many still have lower levels of Vitamin D. Vitamin D may have a role in the onset of lupus and it may have a role in treatment. I have some papers from academic journals on the vitamin D research - some of which are very positive about Vitamin D and some of which are less so. I have to go now, but will try to find time to dig out a selection of these over the next couple of days and post them here for every one.

in reply to

If anyone would like to see the papers I have, please send me a private message on the forum (click "messages" at far right, top of this page and email MaggieS).

I am happy to email anyone the papers I have.

Take care care everyone.

Maggie

Melinda profile image
Melinda

A question Ted. I can no longer tolerate UV light as i have a form of skin lupus. I am prescibed Ad-cal. I also take fish oils and a magnesium supplement. I do worry i'm not getting enough Vit D3. I know the Ad-cal has Vit-D3, but is it enough?

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