Urine test strips showing blood traces again after being negative for 2 weeks?

[brent5k]

I was diagnosed with WG late January 2013 confirmed with kidney biopsy. Because it was caught so early, I was prescribed Methotrexate (beginning at 10 mg and increasing to 30mg by April) and Prednisolone (beginning at 50mg and decreasing to 30mg by April). When I was diagnosed I immediately bought the testing strips so that I could test my urine daily as the renal specialist emphasised that over the 3 months there should be a reduction in the amount of blood leaking from kidneys. This did happen and two weeks ago the strips showed negative traces. At the same time I got a call from the rheumatologist and renal specialist because of concern about the latest blood tests which showed problems with the liver and both specialists suspected it was the Methotrexate. I was told to stop taking it immediately but continue with Pred, until my next appointment in 2 weeks time when the specialist would examine the results from another blood test. The breathlessness I was experiencing subsided and I generally began to feel much more energetic after not taking Methotrexate for 2 weeks. However, I continued testing my urine and today the testing strip indicated high levels of blood again. Is 2 weeks without something like Methotrexate going to put me right back to where I started 3 months ago or is there 'a period of grace' when changing drugs. Or is it possible to have the occasional 'blood leak'? I am predicting that the specialist will put me on Azathioprine or maybe something stronger. Any advice would be greatly appreciated.

Thank you

Brenton

[Ayla Volunteer]

I think you are likely to be given something stronger than azathioprine, to go with your prednisolone, Brenton. That may be cyclophosphamide or, perhaps, a series of rituximab infusions. Certainly high levels of blood in the urine is not a good sign and I would recommend you phone the renal specialist asap to ask whether he needs to see you earlier.

Sorry to hear you are having this problem, it must be very worrying, and I hope you soon receive some more effective therapy.

Ayla

[Chris-Bromsgrove]

Brenton

From my own experience, being treated for MPA vasculitis my blood and urine results steadily improved over the treatment period as the kidneys repaired themselves. It does seem unusual for the blood in urine results to go backwards, however that does need to be considered in conjunction with all other blood results. I think Ayla is right, the disease may need to be hit with a stronger immunosuppressant. According to the UK Guide on vasculitis ( vasculitis.org.uk/content/d... ) Methotrexate is used to treat mild levels of WG (GPA) where the kidneys are normal. It can also have side effects on the lungs which may explain the breathlessness. Hopefully this is more a blip rather than going back to first base and alternative medication will get you back on course towards remission.

Good luck

Chris

[hamble99b Volunteer]

have you taken a sample in to your gp and talked to him/her about it?

has your urine changed colour?

it's important to report changes,

it could be a water infection, but you should check with your gp. and maybe give the renal consultant a call via his secretary and ask for an app't.

let us know how you get on,

sandra.

where did you get the test strips?

[brent5k]

I have just returned from the rheumatologist. Blood tests from 7 days ago show good control of inflammation, negative ANCA levels and no blood in urine at the time. I tested my urine again this morning and the level had dropped slightly. The rheumatologist basically said that we have given the Methotrexate a go but it was probably not as effective as was hoped. She is putting my main care into hands of the renal specialist with whom I have an appointment next Wednesday and believes that he will prescribe Cyclophosphamide infusions. I asked if it is a concern that by next Wednesday it will be 3 weeks without an immunosuppressant to supplement the Prednisilone and that blood is now showing in the urine samples, but she felt that it should be ok until I can see the renal specialist. All the side effects that I believe I was getting from the methotrexate - breathlessness, cramping in hands and shins and lack of energy seem to have gone. (Sandra - I bought the test strips from a local medical supplies shop that I did a Google search for - I live in Adelaide Australia).

Thanks everyone for the replies.

[hamble99b Volunteer in reply to brent5k]

let us know how you are going on.

sandra.

[tamidi]

My daughter have MPA.She has for 9 months blood in urine.Test strips always shows +++ for blood.She was all that time neg for Anca and all her kidnay function was normal.But now her urine is normal without blood.I find medical article in which dr.said that same people with Wegener can have all life eritrocite in urine.But I must tell you that my daughter(10 years old) was on cyclophosphamide for 6 months.

[brent5k]

The last 3 strip tests have shown the level has gone back to 0. I record all my results using an app called 'My Medical'. Looking back on the graph, there seems to be a pattern emerging where each time the dosage of Prednisilone changes, then there is a spike in blood levels a day later which settles 2 or 3 days after that. I will ask the renal specialist about this on Wednesday.

[brent5k in reply to brent5k]

Just returned from renal specialist. Latest blood test shows negative ANCA, negative reactive protein and urine continues to be blood free. Albumin levels slowly rising. He believes I am in remission and has scheduled another visit for 2 weeks time and if I am still going well he will put me on Azathioprine. He is not considering putting me on cyclophosphamide at this stage but I am continuing with Prednisilone - reducing by 2.5mg every ten days. The specialist didn't offer an opinion on why I had the blood spike a fortnight ago.