I’ve seen many posts on this forum over the last few months about raised protein in the urine. I would urge anyone who gets this to persevere with their nephrologist to ensure they determine the exact cause. The reason I say this is because I’ve recently been diagnosed with a very serious condition called amyloidosis. I’m very lucky in that it has been caught very early and amazingly has not done any damage to my kidneys or any other internal organ.
If I had not had a kidney biopsy I would not have known for possibly many years and then it would have been too late.
Whilst I fully appreciate that this condition will not be the cause of protein loss for the vast majority of people I just really wanted to post this information to raise awareness of this condition. So - if you are losing large amounts of protein - please get it checked out.
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LisaEP
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Hey thanks for sharing. Can i ask how much gr protein a day you were losing ? And have you had any other symptoms? Are you otherwise healthy and fit or is it can be related to other health issues?
Hi the rand urine protein: creat ratio is 248 mg/mmol which is classed as ‘high’. This is a uk measurement so it might be measured differently if you’re in the US or elsewhere. With regards to other symptoms I was getting some discomfort in my right side but I understand now that was completely unrelated. In terms of my general health yes fortunately I’m completely fit and healthy- I know that because I’ve just undergone 2 days of tests and MRI scans at the specialist hospital in London. I’ve been told I’m very lucky because I have no organ damage - if this had been caught at a later stage it would have been a completely different story. That’s why I really want anyone losing protein in their urine to get it checked out. The chances are it won’t be this condition but you just never know.
Thx so much for your sharing. That is very important. We just find out protein in urine for my partner by a random test and its very high too. No other symptoms at all! Very fit athlete type healthy person so we re shocked and upset abit to find out it will be a kidney disease . His GFR is 69 too. Dr thinking its more like a igA nephropathy and thinks its ok and he will be fine ! But currently waiting for a biposy to be done to get confirmation. I m glad you find it out very quick too. They didnt do anyother test on him except ultrasound which was kind of ok.
The other symptom I meant to mention was that I have had swollen ankles on and off for the last year or two but apart from that and the foamy urine I’ve felt absolutely fine. I’m sure your husband will not have this condition but as you say please persevere with the biopsy to get to the bottom of it. I wish you the best of luck.
Thanks so much. Yes he obviously had foamy urine but didnt think of it much. And we feel he gets bloated sometimes but GP or nephro dr didnt thought anything of it. Otherwise no other symptom. Its very tricky. Great that you noticed about it earlish too. Thanks so much. Best of luck for you too.
If doctors can’t find any other medical reasons for his issues and IF you find that it is IGA Nephropathy from the biopsy AND considering you say he gets bloated sometimes, tell him to consider giving up gluten. Look up on google and you will find numerous studies which note that a reduction in gluten and sometimes dairy can help slow the progression of a IGAN. It will likely help with the bloating as well. I’d also have him get tested for celiac though you can certainly have a gluten intolerance without being celiac. Also, if he eats a high meat protein diet, you might want to reduce that and eat more vegetables.
If it ends up being IGAN, make sure you understand this disease. It sounds like your doctor might have a relaxed view of it if he’s saying it’s “ok” and he will “be fine.” There is no reason to worry, but lifestyle changes will probably need to be made. Here is a good article about it niddk.nih.gov/health-inform.... I have IGAN and although I have things currently under control, it is a serious condition and should be treated as such. I saw my nephrologist every few months until I got my protein under control. Now I see her every 6months.A lot of mainstream doctors will brush it off if your GFR is above 60. Let us know how things go. Several of us here have IGAN in various stages and can give advice on diet and lifestyle.
Hey thanks so much for your reply. Thats very nice of you to give us information. We were quite upset to find out the result since it was totally out of blue out a random blood urine test ! Unfortunately there is abit of waiting time to do the biopsy specially now that we really wanna know whats the diagnosis. I read somewhere about gluten too. Sure i will take that into consideration. Will read the article and let u know whats happening.
Thanks for your post very encouraging. Can you plz elaborate more how much protein in urine.. I have been recently diagnosed with iga n and my creatinine is 1.3 and protein in urine is 0.43 g/l protein/creatinine ratio 98 g/mol.
Any symptoms so far I am taking micardis 80 mg to control my blood pressure..
Thanks for the information. I am glad they caught it early for you. Here's a link that that talks more about it. It is a rare disease. mayoclinic.org/diseases-con...
yes and in general, I believe CKD in all forms is under diagnosed. That is why forums like this are a great educational tool. Keep sharing your journey with us. You never know who you may help.
M sorry about that Lisa I know we spoke a while ago about protein being found in the urine. I too have been having tests for Myeloma via a Haematologist and I have been diagnosed with MGUS which is a non benign blood condition and like you will be monitored for the rest of my life so they if it does proceed to Myleoma or possibly Amloidosis it will be caught early. As you say a kidney biopsy would not have detected this. Hope all goes well x
Hi sorry to hear about your diagnosis too but hey on the positive side at least our health will be carefully monitored for life Not quite sure what you mean about the biopsy. What I was actually saying was that the kidney biopsy DID pick my condition up. If I had not had the biopsy I would never have known.
Sorry to hear that, but hope the doctors now can treat you well enough for so long I did have biopsy also in December and they gave me diagnose of Minimal Change Disease, but still now even with 10mg of corticosteroids have a trace, and was leaking 3+ before so I am still worried and thinking about doing MRI of whole body, to make sure there is nothing else. I don't like to be on Prednisone all the time so will see. My dr told me to be on it at least 6 months and my second route now is already 4th month. Best luck and will be in touch!
Hi, I also was diagnosed with MCD in may. I was down to Pred 2,5mg now hoping I will able to get off. But lately Ive been feeling sick again and have protein in urine again. So I guess thats my first relapse ☹️ So yesterday we increased the Pred to 40mg for 3 days and then 20mg till the next follow up app. I hate that I have to be on Pred for so much longer, but fingers crossed that this will be the only relapse.
Did you have traces of protein in urine all the time on cortisone or did it come back? From what I understand MCD is very responsive to it.
Ive also been investigating if there is something else that could have caused this, because I have so many aches in my body and also have gotten a weird rash the doctors dont understand.
I am sorry you had relapse and you feel sick. I had 2 and getting 3rd one also, as soon as I was done with prednisone after 6 months first week I had a trace of proteins in urine. This is my second full week that I have been off of prednisone and already my proteins are +++, just went to do lab work for my upcoming appointment with nephrologist on Monday. Will see what she will say. I feel OK, maybe getting up more swollen in my face and hands right now, but everything else is still normal, no body ache like I had after the first short round and high dose prednisone.
So here is the answer on your question: I did not have traces of proteins while I was on prednisone, the first time I was on for 6 weeks(Dec 28th 2018-Feb 8th 2019), I was taking 60mg for 2 weeks, 40mg one week, 30 mg one week, 20mg one week and 10 mg one week and I stoped. A month and half laterMarch 16th I started noticing foamy urine and I knew proteins are back, and I had so much body/bone ache so I went to see my nephrologist end of the March like 27th, and he said that I was getting off of the prednisone maybe too fast and since I was on high dose my bones hurts. So he puts me again on 40mg Prednisone which I did not take I started at 30mg and he said for one week if my proteins are gone, which they were as soon as I start Prednisone for that first week my proteins are gone, so I was taking 30mg week, and went down to 10 mg for week and then 7.5mg and I got trace again after 10 days being on 7.5mg. So I went up again to 20mg for 2 weeks, then 15mg for a week, 10 mg for a week, 7.5mg for 2 weeks, 5mg for 2 months, got a little bit proteins again went up to 7.5mg for 3 weeks, started 5 mg for 3 weeks, 2.5 mg for 2 weeks and stoped Oct 3rd and few days later trace again and now is probably +++ since I have a lot of foam in my urine. So I relapse again and will see what is next option. I do respond very well to Prednisone, but I don't want to be on it all the time, and wonder if there is anything else causing this condition.
My other lab work is fine, I did X-ray of my chest also to eliminate Hodgkinson Lymphoma and did blood work, but not sure what else I can get it done.
By the way I am female turning 45 this month, never doing alcohol, never a smoker, don't drink pop just water, tea and juice sometimes, not on pain medications, but I was taking birth control pills for the past 13 years which I stoped back in December when all of this happened.
So I will let you know on Monday how went with my dr.
Wow, thats my fear as well..that I will relapse multiple times and become dependant on prednisolone. Not a drug I want to stay on too long either.
Ive also been troughother tests: ultrasound of abdomen and gasthroscopy because of constant flank pain (right side, sometimes left, just under the ribs in the back and front. Not muscle pain). The pain was worse at the initial onset of the disease and worse again now as I have relapsed. They cant find any reason for it so my nephrologist thinks its my kidneys. Weird, but I guess we are all different. And also bowel problems that got worse when we decreased the Pred dose and now when we increased it, its better again.
😕
Im a 30 year old female, drink beer sometimes and has taken the birth controll pill over 10 years at least.
Thank you, I have swelling in my face, hands and abdomen more this morning, and more foamy urine also. My bowel is also different with prednisone and without.
I did have proteins when I had my first child (27 years old) and at that time had preeclampsia but after that I was fine. I started BCP first time in my life when I was 31 years old, and was on it for 13 years, so I don't know what to think and what caused my proteins now, I also had UTI's in the past and 2 months before all of this happened last year I had it with visible drop of blood in toilet few times and used antibiotics. Also was a little bit stressed at that time so maybe the triggered it.
When I stoped BC pills I never got my period, and went to check my hormones and find out I am at post-menopause
So here is the update from yesterday's doctors visit: My proteins are 549 mg/dL, so it is even more than ever because it used to be 349 the most. You can see below the test results.
She put me on prednisone again 60mg for 2 weeks and 50 mg for two more weeks and to see her again and do labs. She also think to put me on Tacrolimus after a month but I am afraid of that, so we will see. Why I relapse this time who knows, I was taking some pain meds since I had toothache the last 2-3 weeks and had root canal done on Thursday, draw my blood and urine on Friday, so who knows. She also think it is idiopathic but I am sure BCP has something to do with my filters over years and some UTI's that I had also. I probably will never know, so here I am again on high dose for a month
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Not quite sure what you mean about the biopsy. What I was actually saying was that the kidney biopsy DID pick my condition up. If I had not had the biopsy I would never have known. 
Protein in Urine & "Slightly echogenic kidneys"
Wondering about protein in urine
Wondering about protein in urine
Protein in urine 1st time
