Anyone with IGA here? All new to this

[kirky77]

Hi everyone,


I'm not very good on forums so I will try my best, my husband had a medical for life insurance and he was declined,
He is 42 doesn't drink/smoke is very fit and eats relatively well most times, he is in perfect weight category so to say we were surprised is a understatement. We were told he had a very large amount of protein in his urine plus microscopic blood his GFR is 43 so we needed to see a Neph for more tests. After a kidney biopsy it was confirmed he had IGA Nepthropathy I hadn't heard of this before so I've started to do some research myself, I just wanted to hear anyone's experiences of IGA, we have been told that it can lead to renal failure and he may need a transplant in the future.

It seems with what I have read is that he has a high chance of this happening as at diagnosis he had high blood pressure/high creatine level his ACR is 113.5 and his Neph said with the results he has if they did a 24 hour urine collection it would be around 5000 ?? But I didn't really understand what he was saying or I got is that he is loosing a hell of a lot of protein. It is believed he has had it for approximately 5 years so loosing around 11% kidney function a year. My maths isn't brilliant but that only gives us a few years at that rate before needing/discussing transplantation. Or am I jumping the gun and we could be fine for years and years !!!!

We are just a little lost but we also want to prepare as much as we can for the future we have 3 children and run our own company. Any advise would be great and if we can hear of anyone with IGA would be great. Please be as honest as you can we are pretty tough hope anyway.


Rebecca

[Tibbs]

Hi Rebecca,

I was diagnosed in the same was as your husband was, with a biopsy.

I developed the disease at about 23 and was diagnosed a year later. I had a slow decline, but with the amount of blood in my urine they told me it was likely that I would need a transplant. 10 years later it proved true, and last November I had a live donated kidney transplant from my dad.

I felt pretty much fine until my kidney function dropped to less than 20%. After that I just felt a bit tired. It got worse, and I was at about 12% when I had my transplant, I was tired all the time and sleeping 12 hours+ a night. With this disease you can get some flank pain - my kidneys used to ached when I had a cold, but aside from that overt symptoms are rare.

My decline was slow but got quicker as time went on. Having said that, I hung around at about 12-15% for about 6 months longer than they thought. I didn't need dialysis before my transplant, when they expected I would.

The final year before transplant and the workup to transplant is here on my thread:

http://www.kidneypatientguide.org.uk/fo ... f=2&t=7682

It also covers what has happened post transplant. Please bear in mind I've had a pretty tough time post transplant, so don't think my experience is normal in any way!

Best of luck with every thing and I hope you get the answers you need from here and from your consultants.

[cazpi]

Don't panic, now he's been diagnosed he will receive treatment which should slow down the rate of decline significantly. I was diagnosed in my early 30's with approx 40%EGFR, now I'm nearly 50, and still fit and well, no transplant as yet. Exercise, eat well, and stick to the meds, and hopefully it will be many years before he gets close to needing a transplant.

[Jonny B]

I have IGA, had a transplant last October. If you have protein and blood in the urine then it is a sure sign you will end up needing dialysis/transplant. I would get him to ask about steroid and immunosuppressive treatment at the hospital as it often works very well in halting the decline of the kidneys.

[kirky77]

Thank you so much for your replys.


Tibbs it seems like you have been to hell and back!!!!

Cazpi may I ask if you had high blood pressure/high creatine/ heavy protein loss/blood in urine when diagnosed ?

Jonny- his consultant seems to think steroids autoimmune surpressants cause more problems then helping, he is not a great fan of this type of treatment. He seems to give the impression that its a suck it and see approach. He is very good and honest with us, he did mention transplant on our first visit not to scare us but to be as truthful as he can. What meds did you take ?

Thank to everyone that has replied I really appreciate you taking the time to help us.

Rebecca

[per156]

Hi kirky !

Take it easy and see what cazpi has written. Your husband can 20 years from now still be far away from a transplant. It mainly depends on how well they can reduce his blood pressure and protein loss. Guess the neph will soon try BP-pills like Ramipril and/or Irbesartan (or related medication). They have the advantage of reducing both BP and protein outflow however with an initial loss of kidney function (at 43 % there is plenty of giggle room).

All the best
per

[kirky77]

Hi kirky !

Take it easy and see what cazpi has written. Your husband can 20 years from now still be far away from a transplant. It mainly depends on how well they can reduce his blood pressure and protein loss. Guess the neph will soon try BP-pills like Ramipril and/or Irbesartan (or related medication). They have the advantage of reducing both BP and protein outflow however with an initial loss of kidney function (at 43 % there is plenty of giggle room).

All the best
per

Thanks Per

We defo want to keep positive, I did forget to say he was diagnosed with high blood pressure 3 years ago which he has been on medication since then but still loosing kidney function. He is on 10mg of Ramaprill per day but still has heavy protein loss?

Rebecca

[cazpi]

Hi again Kirky,

I had very high blood pressure on diagnosis, and some protein leak. Now they are both OK. (Currently on 20mg lisinopril - I used to take 40mg lisinopril and some doxazosin for the BP)

Someone may correct me on this but as far as I'm aware it's creatinine levels which are important, NOT creatine levels (they are different). I think it works like this, but someone who knows better than me can probably confirm and/or explain properly.....

Kidney function is often quoted as Egfr (estimated glomerular filtration rate) which is the rate at which kidneys filter out stuff, particularly creatinine. Ideally this should be as high as possible (it's expressed as a percentage). A low creatinine clearance rate goes with a low egfr, but because it's not being filtered out of your bloodstream the creatinine levels in a blood test will be HIGH.

The creatinine level in a blood test measures how much is left in, whereas the creatinine clearance levels estimate how fast it is coming out. You want the former to be low, and the latter high.

Excuse my amateurish descriptions - someone please put this straight if I've got any of it wrong, but this is how I understand it from talking to my consultant.

Look on the bright side, I met an elderly man in clinic last week, who has had a steady egfr of 16% for TEN years!

[kirky77]

Hi again Kirky,

I had very high blood pressure on diagnosis, and some protein leak. Now they are both OK. (Currently on 20mg lisinopril - I used to take 40mg lisinopril and some doxazosin for the BP)

Someone may correct me on this but as far as I'm aware it's creatinine levels which are important, NOT creatine levels (they are different). I think it works like this, but someone who knows better than me can probably confirm and/or explain properly.....

Kidney function is often quoted as Egfr (estimated glomerular filtration rate) which is the rate at which kidneys filter out stuff, particularly creatinine. Ideally this should be as high as possible (it's expressed as a percentage). A low creatinine clearance rate goes with a low egfr, but because it's not being filtered out of your bloodstream the creatinine levels in a blood test will be HIGH.

The creatinine level in a blood test measures how much is left in, whereas the creatinine clearance levels estimate how fast it is coming out. You want the former to be low, and the latter high.

Excuse my amateurish descriptions - someone please put this straight if I've got any of it wrong, but this is how I understand it from talking to my consultant.



Look on the bright side, I met an elderly man in clinic last week, who has had a steady egfr of 16% for TEN years!

Hello!!!

I've just looked through his paper work and it says Serum creatinine level should be (45.0 and 104 0umol/L) his was above range at 154 umol/L above high reference limit. abnormal result, but i think this isn't too bad.

I dont know if you would know about ACR which is Urine albumin/creatinine ratio normal ranges are 0.00 to 3.5 David's is 113.3mg/mmol which is abnormal, Did you have anything like this ? They have him on high bp meds but every urine sample comes back with heavy protein loss. I think the decine is faster with kidney function if you have heavy protein plus blood plus a very high ACR level.

Its nice to hear that people are going years and years without intervention needed but i don't know if the ones that are lucky have such drastic protein loss and blood in urine on every urine test done, i think if there is people like that then i would no doubt be more relaxed but my heart is saying that he will need a kidney transplant at some point with the evidence and what i have read.

Thanks everyone for your patience, I feel a bit overwhelmed with it all and my husband is like "what ever!!" I'm the worrier as you can no doubt see

Rebecca x

[cowman]

Hi i was diagnosed with iga 5 years ago after a routine blood test which showed i had a function of about 30% and i also had a lot of blood a protein in my urine and a sky high bp.I was put on bp meds and also steroids i am now on dialysis overnight pd which is going well and still managing to work full time on a dairy farm.

[kirky77]

Hi i was diagnosed with iga 5 years ago after a routine blood test which showed i had a function of about 30% and i also had a lot of blood a protein in my urine and a sky high bp.I was put on bp meds and also steroids i am now on dialysis overnight pd which is going well and still managing to work full time on a dairy farm.

That's fantastic that you feel well enough to work full time, are you going to have a transplant? What is pd dialysis ?


Rebecca x

[cazpi]

I dont know if you would know about ACR which is Urine albumin/creatinine ratio normal ranges are 0.00 to 3.5 David's is 113.3mg/mmol which is abnormal, Did you have anything like this ? They have him on high bp meds but every urine sample comes back with heavy protein loss. I think the decine is faster with kidney function if you have heavy protein plus blood plus a very high ACR level.

Just looked on my last blood results, I don't have ACR listed, and nobody has ever mentioned it. Apart from the very early stages after diagnosis, I have thankfully never had much of a problem with protein or blood in the urine.

[kirky77]

I dont know if you would know about ACR which is Urine albumin/creatinine ratio normal ranges are 0.00 to 3.5 David's is 113.3mg/mmol which is abnormal, Did you have anything like this ? They have him on high bp meds but every urine sample comes back with heavy protein loss. I think the decine is faster with kidney function if you have heavy protein plus blood plus a very high ACR level.

Just looked on my last blood results, I don't have ACR listed, and nobody has ever mentioned it. Apart from the very early stages after diagnosis, I have thankfully never had much of a problem with protein or blood in the urine.

Thank you for looking I think if you have a lot of protein and blood in your urine (constantly) that's when it's not the lucky ones that have it for years and years with no problems. It's a wait and see game I guess.


Rebecca

[Tibbs]

Thank you so much for your replys.


Tibbs it seems like you have been to hell and back!!!!

Cazpi may I ask if you had high blood pressure/high creatine/ heavy protein loss/blood in urine when diagnosed ?

Jonny- his consultant seems to think steroids autoimmune surpressants cause more problems then helping, he is not a great fan of this type of treatment. He seems to give the impression that its a suck it and see approach. He is very good and honest with us, he did mention transplant on our first visit not to scare us but to be as truthful as he can. What meds did you take ?

Thank to everyone that has replied I really appreciate you taking the time to help us.

Rebecca

It's not been that bad really - this year has been a bit of a write-off, but it hasn't all happened at once, and everyone says that the first year is the hardest.

As for working, I worked up until lunchtime the day before transplant and was back 3 months after the op. I'd have been back sooner had I not had rejection. I'm doing the same for my nephrectomy and will hopefully be back to work after a couple of weeks, recovery permitting.

I had heavy protein loss and high blood pressure. Both ACE inhibitors (the Ramipril Family) and the ARBs (Irbesartan Family) have a positive effect on both BP and protein loss. I was on both before my transplant!