does anyone know how much blood it requires in urine sample to know if the kidney isn't functioning properly.

[rrahman]

I saw my consultant last week and the copy of his report mentioned that I had 'moderate blood and protein as before' in my urine sample.

Now I am getting a bit worried as 'moderate' to me, means ENOUGH to be thinking the worst. If it means my kidneys aren't filtering properly than I am just thinking all sorts including dialysis-transplant.....Don't want to worry my parents either, as they fall ill and stress everytime and I try to keep a brave face and say everything is okay, but even I'm concerned now as the ANCA tests have ALL been positive since I was discahrged from hospital in April, but were in their 20's and last month it went back up to 52! at my worst it was 110. I'm not sure what's happening to my body and my consultant was honing in on the fact that people/rather ME in particular, given our condition don't fathom truly how serious and dangerous it is as there is a strong chance of relapse in the first 2-3 years (40%) got me more worried. I came clean about not taking 2000mg of mycophenolate /myfenax as I was only taking 1000mg. Said I should've told him.

[Albasain]

Hello Rukshana,

I have sent you a text message regarding your concerns.

Regards,

Dave

[Suzym2u Moderator Vasculitis UK]

Any amount of blood in urine should be investigated thoroughly, as it could be coming from the kidneys or the bladder. Some people who have kidney damage can have leaky kidneys, but it should be investigated....

best wishes

Susan

[Tippon]

' I came clean about not taking 2000mg of mycophenolate /myfenax as I was only taking 1000mg.'

'the ANCA tests have ALL been positive since I was discahrged from hospital in April, but were in their 20's and last month it went back up to 52!'

If you're not taking the correct medication, or the correct dose, the illness is not going to get better, and could well get worse. I know the meds aren't nice and can have some unpleasant side effects (trust me, I was hospitalised by them last month!), but overall they're better than the alternative.

I had a kidney transplant in May this year, caused by Wegener's, and I've been constantly in and out of hospital since. I'm still one of the lucky ones though. I know other kidney patients who've been waiting years for a compatible transplant and have been on dialysis throughout.

If you don't mind me asking, what's the reason for only taking half your dose?

[rrahman]

hi, i think the only real explanation i can offer is the fact that I am just so tired of taking so many tablets and often i even forget to take them....I just felt like the side effects are really bad for me and i hate it. In every way. i just feel like sometimes all I do is have tablets I call it 'candy' now.

That said im weaning myself on 1500 and than 2000 because I am so scared of having a relapse if it is the case just because of me not taking my meds properly. I guess if I look at the fact that I am alive and so I just have to do what is needed. But really it was just that I was so tired of popping myself with a cocktail of drugs.

[Chris-Bromsgrove]

Hi, I have been in remission from MPA for just over a year now but my routine tests still indicate traces of blood and protein in my urine. My consultant is not concerned by this. It's not unusual to have some residual damage to the kidneys that does not heal. However if it is on the increase then as Susan says it should be looked into. If your kidneys are not functioning correctly then you are also likely to have adverse creatinine readings in your blood test. I have remained ANCA positive, with readings in the region of 25 - 35 but again my consultant is not concerned by this, providing all other vital signs eg how I feel are good. If the readings start rising then that is a cause for concern.

The meds are unfortunately a necessary evil and our doctors wouldn't be prescribing them unless they were absolutely essential in maintaining remission. I also take mycophenolate and it did upset my guts for the fist few months but gradually it started to settle down. If it is causing you a lot of malaise then it's worth discussing possible alternatives with your consultant.

[roobarb]

Dear rrahman

I feel for you, as I have had huge problems with taking oral meds. The list I can't tolerate almost fills an A4 sheet! My rheumy has been really helpful about this, & tried to find alternatives. I am about to start methatrexate injections, in the hope that this can be my long term maintenance therapy. I have also had protein in urine & kidney investigations. The protein seems to come & go, like many other auto-immune symptoms. I was told that the dip tests are very basic. 24 hour urine analysis gives the doctors a better picture of what's going on, & I am sure your rheumy would have asked for this if he felt it necessary.

You don't mention when you are due to see your rheumy again. But please don't continue to worry about this until then, unless it is very soon. You can get in touch with your consultant via the rheumatology nurse advice line. Or you could discuss your concerns with your GP, who may contact them on your behalf. If all else fails, write directly to your consultant. I have found this is a better way of outlining my concerns, when I am feeling very poorly & my communication skills are not at their best.

Take good care of yourself, Roobarb. X

PS. Your picture is beautiful.

[rrahman]

Thanks.

I actually have a consultant who is a neurologist who unlike most have rheumatologist. I'm DUE to see him on the 11th. I showed my GP the report and he said if it said "like before' than its fine.

But I'm. Now thinking is this before when I was hospitalised before or before as in other urine samples.

Consultant did actually mention it there n than that there was urine and I asked what that effect on me and I don't recall what he said which means probably wasn't useful. He hadn't lowered my predisnolone dosage either said he was going to give me a ca'll after he gets the bloods in if he wants me to but he hasn' done so.

I'm actually not going to stress about it. The more I worry I don't think it's helping my body. I have a feeling stress is what got me in this situation in the first instance.

Thanks aboutout the pic....it was actually what I USED to look like. I'm now an inflatable balloon with the Cushing symptoms. I look nothing like me. Couldn't even recognise myself.

R