Creatinine creeping up

[Johnylefox]

Hello,

I am biopsy confirmed IGAN patent.

My creatinine was 1.3mg/dl this time last year, 1.5mg/dl in February, 1.6mg/dl in April now 1.7mg/dl. I am a UK citizen based in Saudi Arabia.

When I go home I do repeat blood and they come out at around 120 micromol/l last year, now 150 micromol/l. Protein leak was less than 1g daily in March.

I take Ibersartan 150mg for blood pressure together with calcium channel blockers, so the BP is now averaging 120/85.

But the creatinine is going up. My urine looks like a dish bowl with bubbles/foam which looks like its three inches thick.

My question is whats next?

Is it Pred? Or is there anything else I can take. I have heard people mention bicarb. What is that?

My neph told me I don't need to go onto a vegetarian diet yet but I have no objection in doing so if it buys me an extra few kidney years.

Thanks and best wishes to all.

[AmandaClare]

I don't know much about IGAN. But much as I'd love you to go veggie ( I'm one) please wait until you've seen a dietician before changing your diet. Any change can have unintended consequences, eg if you're excreting a lot of protein and then not eating much of it you may end up deficient (I was on a high protein diet for years for that reason, though admittedly I was still growing).

Of course eating healthily and losing any extra lbs is especially important for renal patients. Beyond that I'd wait for your neph.

Good luck, I hope you find a plateau.

[wagolynn]

Hi Johnylefox,

Bi carb is used as a buffering agent to correct acidic blood, it will not help.

Unless you eat excessive amounts of protein a vegetarian diet will not help.

I 'good' diet (5 vegetables or fruit per day) will not stop the progression, however it will maintain your general health which is important.

As AmandaClare says, check with your nephrologist before making any changes.

Best wishes.

[Tibbs]

I have IgA and there were 2 things on the agenda when my creatinine started to rise.

I was put on 500mg of MMF (Mycophenolate Mofetil) twice a day. The science behind this is inconclusive, but my consultant thought it worth trying. I also considered fish oil tablets, for which there is also inconclusive evidence of effectiveness. However the sheer amount of tablets you had to take and the side effects (fish smell and fishy burps - no thanks!) meant I didn't bother. Pre-transplant steroids weren't on the agenda, I don't think Hammersmith are a fan.

When diagnosed I think everyone goes through the 'what can I do to make this better' phase. My consultant was very clear - there was nothing I could do to make it better or worse other than to take my tablets and, as Wagolynn and AmandaClare said, live as healthy a life as possible.

[Johnylefox]

Thank you one and all.

I eat 5 fruit and veg per day and walk everywhere.

I allow myself a monthly can of coke.

I eat chocolate once per day.

I know these will have to go.

I do not mind going vegetarian. I believe my body was made for that type of existence. Its just that protein fills me up.

Thanks again.

[MandyV]

As others have said, don't rush to change your diet without discussion with your nephrologist - when I went on PD I actually had to increase the amount of protein I ate and got told off about eating too many carbs (protein made me feel nauseous). There is some discussion being had now (in various places across the globe) about LCHF (low carb, high fat and medium protein) diets and suggestions that carbs/sugar might be responsible for inflammation which I am following with interest ...

[wagolynn]

Hi MandyV,
That sounds interesting, do you have a link to the diet information/discussion?

[MandyV]

There are lots of articles and threads - I am trying out the diet based on Prof Tim Noakes from the University of Cape Town - you could google either 'Real Meal Revolution' or 'Banting' - his books are available on Amazon or there are lots of facebook groups out there. Prof Noakes refers to a number of American doctors (and a UK one or two) so if you start with him it is a good place to start. He is causing huge controversy in South Africa and there is a big case (starting tomorrow) about some advice he gave but even the US is starting to admit that fats are not as bad as previously stated and Sweden is up leading the way. The important thing is that the advice is all about eating real food (not processed) and not over dosing on protein when you reduce sugar/carbs. He suggests that whilst everyone can follow the diet the people who will really reap the benefits are those who are insulin resistant /carb sensitive (especially Type 2 diabetics) - fascinating I think but definitely something each person should research for themselves ...

[wagolynn]

Hi MandyV,
Thank you for the pointers, I knew that the original work on fats was not as absolute as the media suggested. The one thing that most diets underplay is exercise, not to burn off calories but for the well being of our bodies including the digestive tract.

[MandyV]

Couldn't agree more to exercise for general wellbeing - I have recently been on a holiday to learn a type of pilates - Method Putkisto - which concentrates on functional fitness. Fascinating to hear about how losing the mobility in our ankle joints is a huge cause of falls in the elderly, and how easy it is to keep it .... it is useful to optimise all sorts of other exercise (Nordic Walking and cycling are my two modes of choice) ...

[wagolynn]

Hi MandyV,

I have had a look at Prof Tim Noakes stuff. Once I started reading I remembered I had read about this before (old age ). What he is suggesting is removing highly processed carbohydrates from his diet and eating low grade carbs in place, he makes up the energy deficit, by eating fat and protein (as I understand it from other sources, unused protein will get converted to carbohydrate and becomes an energy source).

Eventually, no need to worry now, when you reach dialysis stage, you will be advised to reduce Potassium, Phosphate and Calcium intake. Which boils down to, a big reduction in dairy products, taking phosphate binders and being selective about high phosphate foods, similarly avoiding high potassium foods. Sodium, (usually in the form of sodium chlorate common salt) needs to be reduced to help lower blood pressure, as high blood pressure will damage even healthy kidneys, I would expect you have been told about salt already. All this adds up to knocking a hole in your food choices and Prof Noakes choices.

Caution, apart from salt, do not start adjusting for potassium, phosphates, and calcium until you are asked to do so, it can be dangerous as all are essential to life, when it is required, you will be advised and monitored by a dietician.

It is worth remembering, the human gut is very accommodating (we are omnivores) it has evolved to deal with a lot of fibre (low grade carbs), with, occasional protein, and fat, and works best under these conditions.

Warning, all the above is based upon what I understand is the up-to-date view but it is my interpretation.

Best wishes.

[MandyV]

Hi Wagolyn - assume you are giving jonnylefox your views about changing diets on dialysis? I am very successfully post transplant thanks!

Am a little curious about why LCHF eating should be a problem on dialysis - in fact you can perfectly successful eat this way excluding high potassium food (if you want/need to - I love avocados) but bananas, potato etc are excluded and you can cut out dairy completely and since it is not Atkins where huge amounts of protein are encouraged I would have thought hits most of the suggested hot topics .... anyway as i said before I encourage all to make their own mind up based on their own circumstances ...

[wagolynn]

Hi MandyV,

High fibre or rather 'five-a-day' is proven to give longer life on dialysis.

I made the point because, I noticed that many of the followers are interpting the Profs diet as 'low fibre' rather than lower carbohydrates.
Looking at what he has written, he has shifted towards leafy low carbohydrate vegetables.

The Prof does say, he has chosen this diet as he is genetically inclined towards diabetes. With that in mind, what he is doing is perfectly logical, avoiding food stuffs that give a 'sugar rush'. As I understand it, fibre in food absorbs sugars releasing them slowly, and carrying some straight through, fibre has a similar effect on many toxins as well. That is why, with many fruits, the juice gives a sugar rush whereas the whole fruit does not.

In short, I am not suggesting the Prof is wrong, for him, and anyone else with a family history of diabetes it should help.

Post transplant, dietary restrictions are, as you say different, however, five-a-day is still recommended for all round good health.

Good health.

[Johnylefox]

Hello,

When I joined I was arounf eGFR 58 with creatinine around 110 or so. My neph interpreted this as giving me a 15% chance of failure within 10 years. This was in Jan 2014.

My latest results indicate I am around the 200 mark and my protein leak is still under 1 but it rises. This was interpreted by my neph as giving me a 50% chance of failure within 10 years. Looking at my biopsy results from January 2014, he soad there was so much damage that Pred or Chemo would have little benefit. That was when I started looking at dialysis. I didn't study it before as I didnt see the need in rattling the cage of a monster.

You do not just live indefinately on dialysis do you?

And you can live 30 years but the average is 8 to 10 years or something?

Judging by the way I am feeling, does depression creep in?

I honestly think my situation is worse than it is but my neph doesn't tell me, to keep me positive.

[wagolynn]

Hi Johnylefox,

I think the 8-10 yrs includes death from other conditions, old age for example. In kidney failure, the immune system is depressed so we are prone to have trouble shacking trivial ailments off. If the patient is actively involved and understands the condition and the treatment they are more likely to live a long time on dialysis.

Dialysis , tends to be used as a holding state until a transplant is available.

Yes, a tendency to get depressed is one of the issues, the best antidote is get involved with your case, as above. Most medical teams are happy to answer questions, so ask.

Most medical professionals, in most cases, will tell you their estimate of your condition, without over egging the pudding.
So I would say, 'go with what you are being told'.

Good luck.