Sticky Blood-Hughes Syndrome Support
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Has anyone ever had bladder symptoms attributed to APS?

Sometimes there is a trace of blood in my urine. I've been treated for cystitis in the past and I know I passed two stones about 10 years ago. I've heard of something called an irritable bladder and wondered whether it could be put down to APS...seems like anything can be! Any similar symptoms anyone?

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Hi Eagle,

yes i have been diagnosed with irritable bladder, and over the years have had traces of blood in urine, have a vague memory that it can be part of the syndrome. my irritable bladder is better since have better control of APS and Sjorgans, so dont know which came first the chicken or the egg!!!!

:-))))))

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Hi Eagle

I think a few of us have had bladder, Kidney involvement with Aps, can only assume it`s to do with blood supply issues. Hopefully improving with the right treatment.

I have found mine have improved, only really giving me trouble when on steroids for chest infections, then have very poor bladder control. Not nice!!!

Take care gentle hugs Sheena xxxxxxxx :-) :-) :-)

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Hi Eagle

welcome to the group and what Sheena is correct, see how you get on when treatment starts

paddy

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Thank you. What treatment is available? I'm on Warfarin although I also am prescribed Fragmin injections due to an unstable INR (Lupus anticoagulant factor). Also, I take Plaquenil. What have you all been prescribed for the bladder issue?

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Hi Eagle

see below for the information i found.

paddy

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Hi Eagle

Irritable bladder has been the bane of my life for as long as I can remember, although I have never had a urinary infection. I saw a urologist a few years ago (can't remember when) who told me that he sees quite a few people like me with connective tissue disorders who have bladder problems. There are various drugs available - I take one called regurin. Doesn't solve the problems but it does help.

Caroline

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Yes , I have trouble with my bladder and get blood in the urine fairly regularly. I am told that persons on anti coagulant will get traces of blood. I currently get all the symptoms of Prostate but do not have prostate, and have just had minor surgery to dilate my urethea, which hasn't worked. I am not being medicated for hughes yet but fully expect to be shortly.

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drmyhill.co.uk/wiki/Irritab...

Irritable Bladder Syndrome or Allergic Bladder

From DoctorMyhill

Contents

1 Symptoms

2 Diagnosis

3 Treatment

4 Related Tests

Irritable Bladder Syndrome or Allergic Bladder may progress to Interstitial Cystitis

Any part of the body can react allergically. Irritable bladder syndrome is the equivalent of irritable bowel syndrome and can be caused by allergies to foods, micro-organisms, or chemicals. The commonest problem is with yeast or bacteria that live in the gut. Interstitial cystitis is a nasty painful chronic bladder inflammation which starts with allergic bladder.

Symptoms

The symptoms of the allergic bladder are exactly the same as those of the bladder infection ie constant desire to pee (stranguary), frequency, pain on peeing (cystitis) and possibly passing blood.

Diagnosis

The only difference between allergy and infection is the number of organisms present. The definition of an infected bladder is when there are more than 10,000 bacteria per ml present in the urine and this can be measured as part of microscopy and culture on an MSU sample. It can also be diagnosed using Multistix for a Urine analysis. This is an extremely useful DIY test because one can very quickly tell from the simple dip test if the urine contains abnormal amounts of white cells, nitrites, red blood cells, protein, sugar, ketones and so on. It is a very sensitive test and often sufferers are told that they do have an infection on dipstick, but microscopy and culture is normal and therefore no infection! Antibiotics relieve symptoms because they reduce the numbers of bacteria. So if the symptoms get better with antibiotics but negative cultures, then this suggests bacterial allergy. If antibiotics make the symptoms worse, then this could point to a yeast sensitivity. If antifungals improve the symptoms, then this could point to yeast allergy. Clinically the commonest problem is allergy to yeast or to bacteria. The problem with yeast and bacteria is that they are normally present in the gut and they are normally present in our food.

However, I have seen cases of severe insterstitial cystitis triggered by chemical exposures, typically to solvents from the carpet and printing industry.

Treatment

Prevent bacteria or yeast sticking to the lining of the urinary tract.

D-mannose is specific for E. Coli, the commonest cause of urinary tract infection and allergy. E. Coli sticks to the lining by a sugar receptor -saturate this with D-mannose and E Coli passes through causing no pro0blems at all!

Bicarbonate is a traditional remedy for cystitis and my guess is that it works by again interfering with adherence. See Acid-Alkali balance

The bacteria and/or yeast causing irritation nearly always come from the gut - either because of the wrong bugs in the gut or because of overgrowth of bugs in the upper gut. So a major part of treatment is likely to be the fermenting gut See Fermentation in the gut and CFS. This involves diet, improved digestion of foods, probiotics and possibly specific antibacterials or antifungals. See Yeast problems and candida.

Maintaining a high fluid intake is useful because this simply dilutes the amount of bacteria or yeast present in the bladder. However, be mindful that if you drink too much water you will wash out beneficial minerals so adjust the dose of MMMs in order to maintain electrolyte balance.

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