I'm seeing a specialist about my kidney issues, that being low eGRF score of around 60. I had the appointment the other day, so the specialist today was, erm, concerned - he said he's seen people with muscle before without such a low eGFR.
He did have a test result that he showed me,
Protienase-3. pANCA: Positive.
Protienase-3 (Phadia) 5.10 iu/aL.
He was speaking very fast and I didn't understand him all that much, apart from he wanted to do a kidney biopsy, as he was confused with my results. I didn't have any inflamation markers, no protien in my urine, blood pressure is not... But he then said thY ippn seeing the Protienase-3 (Phadia) 5.10 iu/aL he cannot just leave it, it needs investigating. He said he's going to discuss with the rest of rhe department.
So. What does Protienase-3 (Phadia) 5.10 iu/aL actually mean, is it Vaculitis?
I cant find any information on this.
Is there a link to having an extreme allergic reaction to wheat and Vaculitis?
Thanks chums
Spencer k
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Thanks Amy, I will give them a call. Could it also be a violent reaction to wheat, gluten? I mean, 10 mins after I eat wheat I feel my body and brain are going to explode.
What other symptoms are there, what symptoms did you have, if you don't mind me asking.
Wheat and gluten intolerance is completely different. It is possible to have two separate conditions. However anca vasculitis is serious and needs the correct treatment.
Hi Spencer, ANCA is simply a rogue antibody found in people who have certain types of vasculitis (ANCA associated vasculitis). There are two types of ANCA (MPO and PR3 and you have tested positive for the latter) and it commonly causes an autoimmune attack on the kidneys and other parts of the body. That said, being ANCA positive doesn't automatically mean you have vasculitis but the fact that you have poor kidney function it needs to be investigated. Hence the need for a biopsy. Chris
Hi Chris, thanks so much for the information. It's needed. My Kidney doctor said he was confused, on the one hand my other tests were normal no blood or protein in my urine, blood pressure is 120/75 resting HR 52, creatinine is 1.10, but I have a lot of muscle when compared to a normal person. I had to ask for a second opinion and more investigation, as the first doctor just said your low scores are due to being very muscular.
He said that reduced kidney function is normal when someone has a lot of muscle because creatinine is normally higher due to muscle breaking, repairing synthesis. Also, rather stupidly, I have been consuming HUGE amounts of protien over the years, I stupidly calculated wrong and have been consuming 1g of protien per lb of bodyweight, when it should have been per KG. So, I've been eating 230g+ per day for 10 years. I have dripped it back to 130g now. But again, this could indicate a strain PM the kidneys and damage.
Looking back on my eGFR scores, for the past 10 years, it's been around 60 - 72, thus he said someone with Vasculitis would have encored more of a progressive, negative , scaring impact on my kidneys leading to a downward trend when it comes to eGRF.
So, to get this blood test result back is very concerning for me (like it has been for all you brave people).
He mentioned that, normally, the Protienase-3 (Phadia) 5.10 iu/aL is normally around 10.0+ ui/aL for confirmed cases, do - by chance - have an opinion on this.
You can actually be ANCA negative and have vasculitis. I don't think there are any hard and fast figures for ANCA levels. It doesn't really sound like typical vasculitis but it does need to be ruled out
Yes 2 weeks off the bike was a bitch. I was lucky. They did find some damage but not enough to impact my health. I think consultants like the biopsy result because it is clear physical evidence one way or the other, especially when the bloods are ambiguous.
That's great, I bet you were happy with that result. I hope yo have a similar result. My biopsy is in 6 weeks, so they can't be that concerned. Take the best of care and bike well.
Hi. My first indication of anything wrong was when a blood test for my type 2 diabetes came back with an eGFR of 11% That's just 1% from dialysis. Rushed to hospital for biopsy. Not pleasant. 3 pain killer injections then the biggy the hollow needle to take the sample. 6 hours on my back. first 2hrs on paracetamol then the pain kicked in and they gave me morphine. I peed blood starting with claret and slowly going down to rose'. 6 months on strong drugs and steroids. This was Jan. 2017. Now my eGFR is steady at 20 give or take a bit. My big problem is permanent muscle aches and pains. I an 83 so it's only to be expected. Look after yourself and cut down on the training. To much exercise gives you heart attacks.Have a nice day and stay positive.
Wanted to post this. This was taken 4 years ago, I have the same eGFR values now, if I had ANCA Vasculitis, and it was destroying my kidneys, surely I would have gone downhill. I'm just having such a hard time thinking I got something that effects 1/100k people. My apologies, I'm really not downplaying your experience, you are all so brave.
Ty for your input Twister. I'm still holding out hope, myself. Blood pressure fine, no blood or protien in urine, creatinine is 1.10, 0.4 over max (considering i have a fair bit of msucle mass). GFR is around 61. Which it's been there for 8 years - been consuming 3.6k cals per day and 200+ grams of protien. My CRP tests are all normal, my blood tests are just above low. I have no other symptoms, so. Fingers crossed.
But, if i have got it, like you brave people. It's deal with it.
Hi spencerk. Not all people who are diagnosed with Vasculitis have kidney issues. About 30% of people who are diagnosed with my type of Vasculitis (GPA) do not have renal involvement. They thought I had but it turns out my issue was taking too many ibuprofen to counteract my undiagnosed condition of extramarital headaches and body pain.
Thanks for the info, may I ask how you was diagnosed accurately. Was it based on symptoms, then blood work. Can you be positive for p-ANCA, but not have Vasculitis. I've read that there can be false-positive, and positive-false results.
Well it’s a bit of a story but I started in July 2019 being short of breath which was put down allergy, then September extreme headaches which GP after 3 visits couldn’t fathom and then October the whites of my eyes went red. GP sent me for eye test, they said fine it’s just a touch of Episcleritis , then November acute body pains in neck, shoulders, and sides, still headaches and red eyes. I then went to see GP and literally had to bang the desk and shake him I was so distraught. He sent me to eye casualty at Hospital, where a young Doctor said “talk me through your symptoms” she then put her hand on my head and asked “is that tender?” It was and she just said you have an autoimmune disease. They did some advanced blood tests but originally diagnosed me with GCA so gave me high dose steroids then 2 days later my tests came back with the Head of the GP practice ringing me to tell me my ANCA was off the scale. I ended up in renal at hospital because of the Ibuprofen I had consumed and had my first dose of Cyclophosphamide the following week. I am not under a Vasculitis specialist but a renal expert and personally wouldn’t have it any other way, I am currently on Rituximab. In just over 2 years she has got me off steroids and all the other meds, my ANCA marker was 200+ and it’s currently 9. Sorry for the essay, you did ask. Nick.
Thanks for the information Nick, and glad you detailed it for me. It's positive to hear you have it under control. And even more positive that its not attacked your kidneys. Still. Its a horrible disease. I'm still holding out hope I've not got it, as I don't have any symptoms- apart brain fog and some aches, pains that seem to be related to diet. I run, weight train without issue.
I, once, consumed a huge amount of ibuprofen, enough to call the ambulance for horrendous toothache, many years ago. I always put my Kidney eGRF values - which have stuck around 60 for 9 years, down to that.
I bet what your saying mate. I too was a gym goer at least 4 times a week but the pandemic and associated risk put pay to that. My consultant referred me for a session with a fitness / nutritionist expert in dealing with steroids and the side effects of other meds. I was already on a low carb/high protein plan (still am) it’s part of my life now, he also suggested to get a bike trainer for the winter which I did. I am a trained chef from a previous life and have found ways of making pastry, pasta and deserts that are low carb. It’s not for everybody but combined with exercise it got me through 18 months of steroids with minimal weight gain and feeling quite good in general, if it wasn’t for this bloody virus I would be living a fairly normal life with a few “off” days chucked in. I still like a glass of wine and have my treats re food but I still get anxious over blood tests. But during steroids I managed to get my cholesterol down from 7.4 (2017) to 4.1. Take care. Nick.
Wow - I too had a tender scalp - very difficult to explain to a GP! I was diagnosed with GPA 6 yrs ago. Still sometimes get it and if my sinuses are all tender I massage my face and then temples and across my forehead and scalp which help.
I was found ANCA PR3 fairly high positive a year ago. No symptoms. I’ve had / been having all the normal investigations for Vasculitis including chest x ray, all bloods, repeat urinalysis, sinus scope & CT, colonoscopy (turned out I had a heamarroid). So far no indication of Vasculitis. It’s been a journey and v concerning but all the Dr’s seemed to have calmed down. Nobody can tell me what it means as typically the blood test is only done when there are symptoms to investigate.
Wow Jcoel, seems similar to my story (thus far). Apart from a low eGRF score, which I have had for 8 years, and a few aches pains, burning sensation now and then... Nothing. No other symptoms. If I eat wheat, dairy, then I suffer so I always out my issues down to food allergies- which are confirmed with allergy tests. If you don't mind me saying, you are one of rhe lucky ones? Perhaps you have the androgens (if that's what they are called), but they don't attack the blood cells. My inflammation markers are all normal.
I was told to be vigilant but not hyper vigilant about my health / symptoms going forward. “I may or may not develop Vasculitis”. Obviously they don’t have data for how many in healthy populations are anca positive as the disease is rare therefore ANCA PR3 is the polar opposite of a routine blood test! I am grateful for every day of health. But also has been hard to integrate the info & not live in dread. I chose to listen to the most grounded / least hysterical Dr. in the mix of those I saw (happened to be the top Vasculitus expert in NYC where I live. Wishing you all the very best for your good health.
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