Protein in urine

[dotster]

Im still awaiting diagnosis for potential Wegeners, just received some urine test results positive for protein this is a first for me, I have contacted my GP for advice (the test was carried out at an allergy clinic appointment and that Dr has referred me to ENT for sinus, tinnitus and nose bleeds), is this just likely path for the course? thank you

[gilders]

Although protein in urine is an indicator that kidneys aren't working as well as they should, it could also be down to something as simple as being dehydrated.

It's definitely not something to ignore, especially if you have Wegener's.

I have had Wegener's for 25 years and have had protein (and blood) in my urine all this time, until my kidney transplant 7 months ago.

Your ear issues are also conditions I have that have been caused by Wegener's.

I don't want to scare you, but things can go downhill very quickly with Wegener's. Have you had blood tests to help determine if you have Wegener's, such as ANCA, inflammation markers such as CRP and blood tests relevant to kidneys such as creatinine?

[dotster in reply to gilders]

thank you for replying yes I have had all the blood tests, creatinine was abnormal in January then returned to normal, ANCA is negative. Previous urine tests have all been fine this is the first time it has shown anything and it seems that over the past 6 weeks or so the new symptoms have been starting, the nose bleeds and crusty nose, nose bleeds, sinuses are 'sore', ear problems started then with intermittent dizziness and really loud tinnitus in one ear and some intermittent pain, now the protein. I feel like my legs are going to break out but having at the moment.

I have contacted my GP for advice and awaiting them contacting me, my biggest problem is that no one seems to want to join the dots of the symptoms and I think it is because all my bloods so far have been normal

[gilders in reply to dotster]

You have my full sympathy. The only sure way for diagnosis is a biopsy of the effected organ. Having said that, nasal biopsies sometimes show false negatives. I don't believe nasal biopsies will produce false positives, so they are still very useful for diagnosing, but not for completely ruling out Wegener's. I.e. if a nasal biopsy shows Wegener's, you must have it, but if it doesn't show you have Wegener's, then you still could have it and the risk is that an inexperienced Dr may give you the all clear.

Nasal biopsies are quick and inexpensive for the NHS, so I would think that should be organised.

When I was initially diagnosed with Wegener's my blood results were bad, BUT after I achieved remission I had a relapse. I knew that I was beginning to relapse BEFORE my blood results showed I was relapsing. I had an understanding kidney Dr who trusted me and began treatment. A week or so after treatment commenced, blood tests results showed that I was having a relapse. So Wegener's CAN be active before results show positive.

[dotster in reply to gilders]

thank you, my referral to ent suggests that a biopsy is taken so hopefully the wait wont be too long

thank you again

[AmyS1]

It sounds like vasculitis. You need to see someone with vasculitis training. It is a rare disease and Dr with knowledge of this are even rarer. Speak to the helpline to find a vasculitis specialist.

[dotster in reply to AmyS1]

thank you I have

[Chris-Bromsgrove]

Hi. It may have been mentioned previously but ANCA negative result doesn't rule out Wegeners (GPA). Also I found when I first started with vascultis it wasn't showing in my bloods all the time. Inflammatory markers went up and down. I think it's important to keep monitoring your bloods even you haven't had a diagnosis. Kidney function especially. Chris

[dotster]

thank you I am awaiting advice from my gp re the urine situation, I had heard about anca can be negative and I think it is all the normal bloods that make it difficult for a Doctor {GP} to grip the potential for a problem.

[dotster]

" 1+ of protein in the urine is extremely unlikely to be of any concern especially in the absence of any blood. In the first instance I suggest repeating the dip.

Thank you"

this was the response from my GP

[happycooky]

You have not mentioned the involvement of a Rheumatologist. Your Doctor needs to refer you to Rheumy as well as ENT.

I have GPA...... Symptoms started Feb 2014 and it took 6 months to get a diagnosis.(this is actually quite quickly compared to other reports I have read)

After many GP visits, 2 A&E visits, and a couple of ENT visits and becoming increasingly unwell and unable to function. My GP, who had done some previous work in Rheumatology said that he felt I needed to be referred to that department. ENT were meantime scheduling a biopsy. Both Consultants came together at that point and my Rheumatologist took charge of my treatment programme from there on. The biopsy was a nessessary part of diagnosis and ultimate treatment. I was actually quite relieved when he said 'I think I know what might be wrong with you' At last someone was explaining to me why I was so unwell..I had never before heard of this condition. Things got moving after that.... I was initially given a Cycophospamide infusion which made me feel even worse. . Then was put on to Methotrexate and steroids. I ticked along. Then I had a flare up 2 years in and at that point I got myself on a clinical trial of Avacopan for one year. I believe I was on the plesibo though as I felt no benefit from that. But as part of that treatment I was given Retuximab. I have had a number of infusions now and am very happy with this treatment. I feel that It has been the least aggressive and most beneficial of all my treatments so far. But knowing when I need my next one has been a bit of a guessing game.

I hope this information is useful. I hope your GPA is limited and I wish you all the best with your journey. It will get better.

[dotster in reply to happycooky]

sorry for the late reply I have not been referred to a rheumatologist and that doesn't seem to be on the cards at the moment. To be honest Im losing the momentum of the fight, I'm back to allergy clinic on 3rd January and the lovely doctor there referred me to ENT so I am going to see what she says. I think my flare is slightly less intense then it was, or maybe I am just becoming accustomed to it who knows, It is almost Christmas and as an NHS worker I know things are slowing down for the holidays. However if I get the petechial rash again I will by pass the GP and head to ED.

thank you for your advice and Merry Christmas