Iga nepropathy: Hi I am Rob 44 yrs from... - Early CKD Support

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Iga nepropathy

Robiga
Robiga
21 Replies

Hi I am Rob 44 yrs from western Australia. I have been diagnosed with iga neuropathy. Symptoms frequent urination, feeling cold all the time, anxiety and depression. My creatinine is 1.30. My egfr was 58 but keep on fluctuating.

but I am leaking protein in the urine.

Protein urine 24hr spot

Protein 0.43 g/l

Creatinine 4.4 mmol/ l

Protein/creatinine ratio 98 g mol

Can some one plz let me know how bad is my protein in urine. I am so stressed

Thank you

21 Replies
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MAS_Nurse
MAS_NurseAdministrator

Hello Rob and welcome to this community.

Looking at your 24 hour urine collection results it would appear to me that your protein is within the normal range.

You say you have symptoms of frequent urination and feeling cold. Are these new symptoms? If so it might be worthwhile speaking to your medical professional to rule out any underlying infection.

It is natural to feel anxious and stressed because of your diagnosis. Our members here will share their knowledge and experiences with you.In the meantime you may find the following links useful.

kidneycareuk.org/about-kidn...

edren.org/ren/edren-info/ig...

Please let us know how you are getting on.

Best Wishes

MAS Nurse & Moderator

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Robiga
Robiga
in reply to MAS_Nurse

Thanks for your valuable suggestions

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Pqe13o

Hi,

I was diagnosed with IGA neuropathy in 1999, When my urine is dipped it shows both blood and protein, I only have one kidney, my other was removed in 1996 due to me having medullary sponge kidney, as a precautionary measure I have to take a blood pressure and cholesterol tablet to protect my kidney. My IGA has been well managed, I have 6-12 month appointments with my renal consultant and apart from loading life insurance and travel insurance I have been very fortunate that it has had no real impact on my life, at the last renal appointment the Doctor said he did not expect my condition to deteriorate.

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Robiga
Robiga
in reply to Pqe13o

There is a hope my friend

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KJoll

Hey Rob from WA - I am 39 and was born in Perth now live VIC!

My eGFR fluctuates 57-60

Last urine results were:

Albumin concentration 842mg/l (ref range 0-25)

Alb/Creat Ratio ACR 131.6 mg/mmol (<3.5)

Your urine protein doesn’t seem too bad to me!

My docs aren’t sure of why my kidneys are failing 🤷‍♀️

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Robiga
Robiga
in reply to KJoll

Hey k joll nice to hear from you.. when were you diagnosed with your kidney problems. Do you have any symptoms.i am just freaking out because I have a young family buT after finding friends like you on this forum i am bit relaxed now to share our journey together.

Do u take any medication for bp or diabities.. I am on telimisratan 80mg my next appointment is on 5th of november with the renal doctor..

Thanks

Reply
KJoll
KJoll
in reply to Robiga

You can call me Kel,

My story is long and very complicated so will try to keep it brief (it will definitely make you feel better about your kidneys!)

I am a married mum of 2 beautiful Children.

Dx with Thyroid cancer at 30

Mets to lymph node in neck at 31

2 x Radioactive Iodine after 2 surgeries to clear my neck (we think the RAI caused some kidney damage)

Diabetes type 2 dx age 35

Recurrence in lymph node this year but only in 1 node so just leaving it at the moment.

CKD is stable but my kidneys won’t last my lifetime (I’ve worded up my son lol!)

I am on medication to control diabetes, suppress thyroid hormone, cholesterol, BP and antidepressant. It’s a struggle getting the balance right!!

I see an endocrinologist, Nephrologist and surgeons regularly (I had to sell my house due to medical costs and not working during surgeries/treatments.) We don’t have a healthcare card as my husband and I earns too much but with meds costing over $200p/m plus specialists fees, private health cover etc we don’t have a very big disposable income.

It is a real struggle having lifelong illnesses and stying positive but I try my best as I want a great life for my children and I don’t involve them too much with my healthcare.

Please don’t get too stressed at your current levels ( stress hurts your kidneys!) live and love life like it’s your only one (cause it is!!!) we do actually have a great healthcare system in Aus so you will be well looked after if and when you need to be.

X

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KJoll
KJoll
in reply to KJoll

Forgot to answer if I had symptoms:

Foamy urine

Kidney pain (more like an ache)

Swelling around ankles

Bloating after salty food

I drink alkaline water (in most supermarkets water aisle) which I’m not sure helps but definitely seems to help me move water when I’m feeling bloated.

My kidney biopsy was undetermined but not diabetes related or autoimmune.

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Robiga
Robiga
in reply to KJoll

Thanks Kell me and my wife we are originally from Nepal.. two daughters 9 and 3. We have a mortgage I work full time and wify works part time..we live near swan v alley suburb called caversham. We are australian citizen now so we love to call Australia our country we love ozzies and Australia. Thank you so much for your support and encouraging words. i forgot to live for 3 months since i was diagnosed but now i can relate to u and all other supporting people to be happy.

Thanks

Really appreciate ur time to write

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Zazzel
Zazzel
in reply to KJoll

Kel, I’m so sorry to hear you e had so many health issues and at such a young age. You have such a positive attitude. That will take you far.

I noticed you mentioned alkaline water. Perhaps you’ve already done your research and are aware of the additives. I wasn’t until recently. It does contain added potassium and silica that might not be the best thing for your kidneys especially if your potassium levels are running high at all. Forgive me for hijacking your post, there are just so many little ordinary things we all take for granted in doing that wouldn’t affect us if we didn’t have CKD, but can add an extra load to our fragile kidneys.

1 like
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KJoll
KJoll
in reply to Zazzel

Thanks Zazzel. I only consume alkaline water a couple of times a month to help with the multitude of other things going on and to help when/if I get bloated. My ph is and has always been normal so just having it every now and again.

It’s apparently helpful with my proneness for recurrent cancer keeping my body in a non acidic state but that seems like a losing battle against everything else 🤷‍♀️

2 likes
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Zazzel
Zazzel
in reply to KJoll

Glad it’s helping! Everyone is so different it becomes complex. There seems to be no one size fits all in this crazy world of our health!

2 likes
Reply
Oldearkie_83

Rob, you are very fortunate to have a physician that is learned enough to diagnose your problem. What did he tell you to do to slow the progression? Just a short time ago, I was exhibiting almost all your symptoms but my PCP could not come up with anything as a diagnosis. This was after a complete blood workup, ultra sound, then to a urologist for a cystoscopy which proved that I did not have a lingering infection or a cancer in the bladder. That was a painless and quick procedure that I was able to watch on the same monitor the doctor used. My PCP said the blood in the urine was something I would just have to live with because my bad kidneys was leaking it into my bladder.That did not alleviate my concern as my GFR is 21 and I'm advanced in years (83). I was already using an adjustable hospital type bed to elevate my feet a bit to control the leg and feet swelling( and elevate my torso to control a hiatal hernia). I had to decide what I was doing wrong and settled on my diet: I was eating red meat like a caveman which produced a lot of uric acid for my kidneys to work on. Also, I drank a lot of dark colas but no alcohol or tobacco. Okay, so I quit the red meat and the sodas (the sodas was a tough one). Still not much result so I asked my doctor if the body pH had anything to do with it. He was noncommittal but said didn't know if it made any difference or not. Well, I checked my pH in the urine stream and sure enough, I was pretty acidic. I had some sodium bicarbonate tablets on hand so I used them to balance my pH, and in three days, no blood in the urine! A lot of the back pain was gone too, caused by my ADPKD kidneys. This wasn't a cure, as I understand there isn't one, but I just eased the strain on my kidneys and my doctor okayed my changes. I check my pH daily now, Sorry about the long story but check with your doctor to see if he is agreeable to a diet change and maybe a different bed. You are young yet and what do you have to lose ? Maybe some cholesterol, you didn't mention that.

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Reply
Robiga

Thanks for your reply I have a young family.. My cholestrol and diabities is under control. I quit alcohol before two years and smoking before 10 yrs.. I don't drink soft drinks.. I want to see my grandkids.. this disease makes me nervous

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Baza3

Hi Rob. 42 yo Also from Australia. Also with iga. I'm 25 gfr. Also young family. Also constant worry and anxiety.

I had a huge amount of protein in my urine when diagnosed as well as a blood pressure of over 190. It's reduced to almost within normal range mostly due to the Coversyl. My gfr has only dropped slightly in these past two years.

The diet tips noted above are all sound. Cutting out salt is important too as long term you need to look after your heart.

Everyone is different but at gfr 58 you are well placed to hopefully stabilise with medication and diet for a long time. I wish I'd caught it at that stage!

Don't neglect the mental side of your situation. See a counsellor if you need too.

Best of luck to you.

1 like
Reply
Robiga
Robiga
in reply to Baza3

Hi baza3

Hope ur egfr gets better with diet and medicine.. how is your protein in urine has it become normal now?? I am on telimisratan 80 mg for blood pressure..

Thanks for ur suggestion about seeing a counselor..

Reply
Baza3
Baza3
in reply to Robiga

Yes protein is virtually normal. It was outrageously high when diagnosed. I suspect I was dropping gfr significantly before diagnosis with high blood pressure and high proteinuria.

When I was diagnosed I remember the doctor doubting I'd make two years before kidney failure. It's been two years and I'm hoping a few more before I get to that stage.

Since getting on the meds and improving diet I've managed to slow it down a lot and reduce proteinuria and blood pressure. I've heard the doctors say it's different for everyone with iga.

I haven't heard what your meds are. I'm on 10mg perindopil (Coversyl) per day and 5mg statin. I also take fish oil which was my initiative (not prescribed). Fish oil is not proven To help, but a lot do think it helps iga

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Ddd4

Hi,

To everyone replying to this thread, do you all have swelling in your legs/feet or overall body/face swelling? And does anyone suffer from progressive hair loss?

I'm 35 y/o and have been diagnosed with proteinuria last November, was leaking out 3g/daily! Have since managed it under 1.5g with Ramipril. My egfr fluctuates, but average around 50-55.

I have been losing hair continuously since diagnosis (have bald patches now & only thin layer of hair left!), and developed water retention 4 months after diagnosis and been struggling since.

I've had two biopsies but no results were obtained (quite obsurd if you ask me?) Have been ruled out of autoimmune disease. But cause of my kidney damage is still unknown & frustrating!

Just wondering if anyone here suffer from symptoms I have? I keep suspecting I have an undetected autoimmune that's causing it all

Reply
KJoll
KJoll
in reply to Ddd4

Hey,

I have hair loss and breakage but it is a side effect of some of my medications and Hashimotos so not sure if it’s also ckd related??

I do get swollen ankles when on my feet consistently and bloat when I’ve had too much salt.

My biopsy came back without a diagnosis too 🤷‍♀️

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