IgA nephropathy, a chronic kidney disease (CKD) and the 5:2

This topic contains 32 replies, has 8 voices, and was last updated by kre8veme 6 years, 5 months ago.

Viewing 34 posts - 1 through 34 (of 34 total)

oatallynuts

9:43 pm
8 Jan 17
Permalink

Hi, I would like to know if anyone else has had success with intermittent fasting and IgA nephropathy or CKD (particularly autoimmune)?

I was diagnosed with IgA nephropathy about 3 years ago after glandular fever, and am curious to see if the 5:2 can help me get an extra handle on the condition. I count myself very fortunate in that my kidney function has remained relatively stable (eGFR last at 75ml/min, lowest 65, consultant has tentatively said more benign form). However the side effects of the BP medication and possibly the condition has meant that I have been unable to permanently get my PCR below 100 and my BP stubbornly remains just above target (would love it if the 5:2 would get this down for me and dissuade my consultant from upping my dose!).

I am interested in the idea of ‘switching on repair function’ on the immune system and kidneys, and am curious to see if this will help in my case and if so hopefully others.

I’m an otherwise healthy 26 year old guy in reasonable shape (despite a ferocious appetite), exercise moderately and have a reasonable diet, but if I lose a few pounds and feel better on the 5:2 then I definitely don’t mind!

Starting the 5:2 tomorrow, porridge is top of the menu, let’s see how this goes… and all the best to all you other 5:2ers and those considering it!

Colyn

10:42 pm
17 Jan 17
Permalink

Hello

I’m new here and I’m glad you posted this. I have kidney disease in the form of IgA. My current kidney function is around about the 19% mark and thankfully its been stable for 3 years now.

Controlling the hypertension is a pig so I’m on a fair chunk of medication to control that along with some Sodium Bicarb to ensure my blood remains alkaline. I’m also trying to follow a low potassium diet. Cholesterol can be a little high at times too so that needs watching.

I’ve always been a fairly active person but thanks to a sit down job and a young child getting enough exercise has been difficult. As a result I want lose a good stone in weight. A second motivation in losing weight is I’ve just started rock climbing. A local wall is perfect for me to get out one evening a week.

So to lose that weight I’ve just started the 5:2 but thus far I’m not being super strict about the 600 cal on fasting days but I’m certainly cutting down on the food intake by a considerable margin. I need to have some food to take the medication. So fasting day will be some porridge for breakfast, apple for lunch and tea is a small portion of whatever we’re having but I may leave something on the plate if I feel it will break the bank. Drinks wise it water, black tea and green tea.

it’s a slow start but I think some weight is coming down but what I have noticed is as follows:
a) Sleep for me is not great at the best of times but it seems more difficult to fall asleep on fasting days.
b) BP seems to be pretty much where it was but I’m in the middle of a medication review so slightly awkward for me to say right now.
c) the day after fasting I feel much better and sharper than normal. My theory is that less food has basically taken some of the load off what’s left of my kidneys and it has allowed them to “catch up a little”.

So I too would certainly appreciate other peoples thoughts and similar stories.

On the BP front losing weight and getting fitter can only be a good thing. Plus I feel a whole load better after any exercise. As I said I’m trialling not taking one of my BP medications as it may have been teh cause f swelling ankles and some shortness of breath. I’m 2 days into that trial at the moment with a visit to the doctor scheduled next week. BP has been ok but I do find mine varies quite a bit during the day.

oatallynuts

8:21 pm
18 Jan 17
Permalink

Hi Colyn,

I’m really glad to hear you’re stable, and it sounds like you’re doing a great job balancing work, kids and the rock climbing too!

In terms of the affects you mentioned, I can say from my experience (still new, only 3 fast days so far):

a) I certainly seem to have a lot more evening energy in general but particularly fast days but am fortunate enough to be a good sleeper (I read once about a paradoxical method, flipping the focus when lying in bed on staying awake whilst subconsciously you are tiring yourself out and not panicking about needing to sleep, which has helped in some instances of rare bouts of insomnia)

b) It’s hard to say about BP this early on as only measured once since starting IF

c) Yes definitely feel better, a lot less lethargic though my second fast day and day after I got wicked headaches which may have been some adjustment (ketone bodies?), but didn’t get headache on the 3rd fast day (which was much easier than the first two days)

d) Proteinurea – I won’t know for sure of any improvements until after my next appointment (February 20th), but I found visually (the froth…) to be increased at first but has significantly reduced in the meantime and stayed reduced (I know it comes and goes but it is much less than even the normal range still)

I’m not on the low potassium yet but one hidden benefit of the 5:2 I think is that you do have a couple of days a week with significantly reduced salt which can only be a good thing too.

My weight loss has been reasonable so far, I saw a big 5Ib drop in the first 5 days or so and lost one more since. It’s certainly not the main aim but I have to say it’s a much appreciated bonus! With 5:2 and only a modest exercise regime I think it may keep me quite slim. Love the sound of what you’re eating, everyone should start the day with porridge, I try do it all in one meal so have a couple of scrambled eggs and something like half an avocado or some seeds in the porridge. Due to being fairly active, male and young my TDEE is a little higher so I’m trying to do somewhere between 650-720 kCal on fast days.

Have you found to have any symptoms or experiences that go along with IgA?

My consultant said it affects everyone differently and there’s no ‘typical’ patient. My first consultant wasn’t very sympathetic and said at my stage it is completely asymptommatic which I feel isn’t the case.

I’ve found a few things with IgA such as:

1. Colds hit me about 100x harder, and take longer to clear up. I think I’m on top of this now, I got recommended tumeric (before Mike Moseley made it cool) as it is said to boost the immune system. I take half a teaspoon in my porridge warmer weather and 2/3 – 1 in colder. Long story but this advice was from a Indonesian herbalist who made the claim of not having had a cold in 7 years. I was sceptical but having taken it all through a cold British winter I have only had one exceptional light cold lasting no more than a day or the occasional sore throat. I’ve not once felt run down since I started taking it (obviously it would be important to check this is OK with existing medicines).

My consultant has told me he has annecdotely noticed that around 3 weeks after an infection people get a lot more haematuria (blood in urine).

2. When I was run down or stressed I seemed to get more proteinurea and feel particularly lousy almost as if poisoned. I also noticed this when I went the gym and doing intense weight lifting like an exercise hangover that kicked in immediately (I do lighter and higher reps now). It’s hard to distinguish but I really feel some of this was attributable to the disease.

3. It’s naughty but I drink coconut water (ultra high in potassium and other electrolytes), another thing I found out on travels in Indonesia, I find this helps my body feel stronger and again I feel helps prevent me from feeling lousy

Thanks for posting too, it’s nice to hear from another person with IgA.

Good luck with everything and keep up the good work, I’d love to hear how you get on with the 5:2 and how it hopefully helps your IgA. I’ll update when I next get results from the dr and also if my BP changes!

Colyn

10:09 pm
18 Jan 17
Permalink

Hello again

yes I’ll try to keep posting here on my progress, or lack of see how things go.

I may be a bit of an odd ball but I try not to let the kidney disease rule my life. I still do everything I used to (kitesurfing, hiking, fishing etc.) and more, just started the climbing as some real exercise that I can do indoors no matter the weather and it’s only a couple of hours of my time. I can do it one evening a week which works well with the little’un and everything. That said I do try and mange things. Potassium intake and other obvious things like alcohol etc.

Some of my thoughts on things so far.

Blood pressure is a big one. Do what you can for yourself and to help your consultant. I have a little BP monitor and regularly record my BP between treatments. It helps a lot because every time I see my consultant my BP is high. White coat fever I guess. But with my monitoring it really helps them and does give you some confidence etc. Although it takes some getting used to how it can fluctuate a bit over a day. Plus with the home monitors its worth taking 3 readings a few minutes apart at times to get more confidence in the results its giving you.

I’m lucky in that I have no troubles with phosphates, calcium and the other electrolytes. That’s got my consultant scratching his head a bit. But I do try and limit my dairy. Although I have a soft spot for cheese, so I’ll have to watch that as its packed with salt and it does no good for my cholesterol levels.

Symptoms. Not many if I’m honest other than some side effects from the medication. Some itching sometimes and that’s pretty much it! That said last November I had been struggling with swollen ankles (Fluid). I had been on a pretty hefty daily dose of Amlodipine at that time along with other BP medication. I’m currently reviewing that with my Doctor and consultant. I’ve stopped the Amlodipine and sticking with the other medication only. So far BP hasn’t been too bad. I always suspected that it didn’t do much. That said if I can get it even lower naturally that’ll be great. Ankle swelling is much reduced now. How much of that is due to stopping that medication and how much is due to other factors is a bit of a mystery. I also suspect that another side effect of the Amplodipine has been shortness of breath, almost like Asthma. I’ve been doing a little bit of jogging 3 times a week and its been a real struggle. Stopped the Amplodipine and ran 2 miles yesterday with little trouble. Worth noting that was on a fasting day too I guess. Stamina is lower than it used to be but how much of that is down to age, the kidney condition and my lower fitness levels these days is difficult to measure.

Otherwise I’ve been ok. Had a couple of flat days where I’ve felt pretty flat borderline ill / nausiated. A brisk walk or even something more strenuous and the turn round is miraculous. Night and day within minutes. Otherwise I’m never really ill which is a good an bad thing. Bad in that I never used to see the Doctor. Never had to really. Perhaps if I had my condition would have been picked up earlier. Although I did get fobbed off once with “eat healthier” Hmm. Lastly I take a Garlic tablet every morning. No idea if it helps with colds or anything but both the missus and the little one have been knocked to high hell with a cold and I’ve been untouched.

Back to the diet. When I was diagnosed I was given a body scan. Years of Rugby and weight training has left me a little heavier set than the average person so they sent me for a body scan to measure my body composition. When they measure eGFR it is based on an average person. Those with higher muscle mass will get lower results than their actual function due to the higher creatinine levels in he blood from the higher muscle mass. Thankfully my body composition was goo but didn’t result in a significant correction in eGFR readings. (Bum) but it did stick two fingers up at the whole BMI thing. So my plan is to get back to that level and more if I can. I want to get lean and as fit as possible within the time I can exercise. So diet will be a big thing. It obviously needs to be a diet that is easy for me to follow within the family group, with work, can be low potassium and of course does not put any undue pressure on my kidneys, such as the Atkins diet would do.

Good luck and monitor that BP is the biggest advice I can give. Try to learn how your body reacts to things. For example me and alcohol do not mix at all (Bum but I dont sleep after the stuff and spend all night in the loo) plus its not good for me. I dont think I’m overly salt sensitive but the smaller the amount the better.

In it to thin it

6:36 am
24 Jan 17
Permalink

Hi Colin and Oatallynuts,
I have PCK and find that my chronic kidney pain improves quite dramatically when I do FDs.

When I was first diagnosed 4 years ago,I was having a terrible time as I had been doing an Atkins style high protein diet and was having swooning episodes,extreme fatigue, itchy skin,high cholesterol (duh!),kidney pain, hematuria and proteinuria. BP was in the normal range 120/80 which was actually elevated for me,as I had all my previous life had very low BP 90/70- but at least I was able to avoid meds.

The specialist I see said there was nothing to be done and I should progress to dialysis within 5-7 years. I didn’t like the prognosis so have been searching other methods of treatment. Since keeping protein levels low in the diet lowers the strain on the kidney I immediately switched to a plant based diet and eliminated all animal sources of ptotein.

The relief from swooning episodes, fatigue, hematuria and proteinuria was dramatic. Cholesterol levels now in the low normal. So I will continue with plant based diet.

I also can no longer tolerate alcohol and feel nauseated if I do drink. 1/2 tsp of baking soda in a glass of water is an old time remedy for kidney pain that sure works for me,but I also have recently added 1/4″ curcurmin, raw source of tumeric to my diet.

I find if I feel edematous that dandelion tea is a good natural diuretic to get fluid off.

Hoping we all get some benefit from the 52 WOL.

Colyn

8:37 am
24 Jan 17
Permalink

hello In it to thin it. Welcome to this small little club I guess.

Agreed on keeping protein levels down but I haven’t gone all the way to a plant based diet. I have also felt rough after a weekend camping and one too many BBQ’s and protein based breakfasts. So I’m sensible about that now. More porridge! I do try to eat more fish if I get the chance having seen somewhere that Omega 3 seems to help kidneys a lot. The plant based diet is certainly something to think about though.

My version of 5:2 isn’t going too bad at the moment but could be better. I’ve lost some weight and certainly feel a bit thinner but I’m not sure if that’s down to a reduction in the water retention problems I’ve been having. That’s certainly less than it has been but not 100% gone. One issue I have is over eating on the non fast days. I need to get a grip there.

I’ve considered a lot of herbal teas / drinks over the 3 years. The problem I have is that many of the one’s that come highly recommended for kidneys and blood pressure etc. are also high in potassium. Dandelion and nettle being 2 that spring immediately to mind. That is one really frustrating area of this condition. There’s a whole load of foods that I’d like to eat due to the health benefits that can come from them but I need to be wary because of the potassium. Nuts, seeds, pulses, certain fruits and veg etc.

Off to see the GP later to look at medication, BP and water retention. But at least I can go climbing this evening. I’ll try to get a 2 mile run in too.

oatallynuts

12:10 pm
24 Jan 17
Permalink

@colyn

Hey, yeah totally agree with trying to not let it rule your life. I would even say now it has helped keep my focus on staying healthy with a little sense of my own mortality it has had its advantages even. It has been a little bit of a journey, at first it was hard to deal with, probably as you say a big part the side effects of the BP medication, BP was pretty much on target to begin with and they had me on high doses of multiple meds (I’m now on just a low dose of one). Very fortunately now I feel well and for the moment at least without issue. I’m glad to hear you’re doing so well too it sounds like you have a very positive mind set and are also on top of things. Also 10/10 for being such a porridge fan!

Yes, I have been measuring my blood pressure at home for a little while and I do think the white coat effect is a thing in my case or perhaps just I find it takes a few minutes of sitting for my BP to settle down which you just don’t get in the doctor’s office. On a positive note, after 4 fast days so far the last couple of measurements have dropped a fair bit and come in a bit below target from what has been stubbornly and consistently above target (average drop of about 12/5). I’ll let you know if this is an ongoing trend. I’m on my 5th fast day today and finding they are beginning to get much much easier – finding the idea of jogging on them isn’t complete and utter madness too.

oatallynuts

12:37 pm
24 Jan 17
Permalink

Hi In it to thin it,

Welcome also! It sounds like you are also proactive and I am glad you have found something so far that helps and fingers crossed the 5:2 only adds to that.

Don’t have much experience with protein restriction but when I was feeling crummy I was doing heavy weightlifting and knocking back the shakes so who knows if that had an effect also. I do much lighter weights now which I much prefer, for some reason heavy lifting I have noticed when I have done it between the lighter seems to make me feel rubbish after and for the next day – every else seems fine and no idea why but I guess we’re all different. With the fasting I feel like it’s more of a Spartan approach… I am perhaps a tiny bit more moderate to protein now.

Please let us know how you get on with the fasting and your condition, how long have you been fasting for now?

oatallynuts

12:43 pm
24 Jan 17
Permalink

@ Colyn

Me again. With regards to the weight loss it has slowed down a lot for me also, but it’s still slowly dropping which is fine for me it’s just a bonus. Remember also if you are climbing and upping the ante on your exercise you could be building muscle so it could be the number on the scales is a red herring!

Also it sounds like you are very active anyway, if you’re in reasonable shape to begin with weight loss will be slower as there’s less excess. Don’t let a slow down get you down, stick with it for the long haul and you will get there!

Colyn

12:45 pm
24 Jan 17
Permalink

Good stuff Oatally.

just been to the GP with my home recorded BP results. Not a huge difference with being on the Amplodipine (daft considering the dosage) and not but they’ve prescribed me a small dose of something else (the name evades me for now) just to get it down and really minimise the risk. But I feel so much better without the Amlodipine so much so that the GP made me write out a few notes so he can raise a “yellow warning” on medication side effects. I can run again! I wish I could get my BP lower naturally but we’ll keep trying and cross fingers.

I’m also looking at how I can reduce my water retention issues naturally. Being off the Amlodipine is a good start but we’ll see if the new medication starts it back up again. I’ve been looking at some benefits of Apple Cider Vinegar just now and ordered some to try. Seems to be some real benefits with the stuff and could work really well with the 5:2.

The fasting isn’t too bad. Bit awkward in the evening but the Insomnia while fasting has passed. Wish I could figure out what triggers it though. Must control the diet on off days better and keep active. I love being active, the more the better.

Porridge rules, especially with blueberries or apple and cinnamon. try it with oat milk. That stuff is also awesome.

In it to thin it

3:47 am
25 Jan 17
Permalink

Hi Oatallynuts and Colyn, I started back to 52 diet in
December. Kind of lost the thread over xmas, but doing well now. I used to suffer with insomnia on FDS too, but now save some calories to have a small snack at bedtime,like an almond milk hot chocolate made with cocoa and stevia sweetener. Sleep like a baby now.

I applaud your efforts to control the effects of CKD. One resource to check out is Dr. Greger. He offers some really elegant, short videos that explain the non-pharmaceutical approach. Just google, Treating Kidney failure through diet, Dr.Greger.

In my personal experience getting off the high protein really made a huge improvement in my symptoms. Used to add protein powder even to my oatmeal?! It was soooo bad for me . . . .

oatallynuts

10:29 am
2 Feb 17
Permalink

@In it to thin it
Thanks for the info, I’ll certainly bear the low protein in mind if things deteriorate! The crazy thing about doing this 5:2 thing is realising you didn’t need to even eat as much in the first place (I haven’t collapsed into an emaciated pile of bones yet!). Also thank you for sharing!

@colyn
Glad you’re feeling better and the insomnia is reduced! It took me a while to find the right BP medicine, ramipril just didn’t agree with me at all independent of the low BP effects, headaches, flu-like symptoms etc. It’s not always obvious that a medicine can be causing problems and I found it hard at the beginning to discuss it with my doctor as I inevitably doubted myself and felt like an inconvenience.

Enjoy your running!

Colyn

11:02 am
2 Feb 17
Permalink

Well I’m not the same person!

Having come off Amplodipine and the dieting I’ve lost nearly half a stone and just as important I can run. New hole in the belt too. It’s not perfect by any means but at least I have something to build on. Previously I was simply confused at my lack of progress and feeling asthmatic in less than a mile. Now I feel I can go for much longer. It was such a weird thing that only reared its head when doing something physical.

I’m still playing round with meds to ensure that the BP is low enough to minimise the risk of further kidney damage. I expect my current dosage of my new medication may increase a bit but so far there’s no real noticeable side effects from it.

Anyway I plan to carry on with my version of the 5:2 which has a kind of random nature to it. Fasting days are when I feel its appropriate and suits what I have going on rather than upsetting family routine’s and the such. The bonus I’ve found is that on the fasting days there is no rubbish food eaten. That then extends a little into the non fasting days so there’s a bonus there.

I’ve just been for a blood test and I’m seeing my consultant next week. We’ll se if there’s anything interesting in the test results from this.

As a side I’ve also been reading the benefits from Apple Cider Vinegar. I will have a word with my consultant about it next week but worth a look. As with anything moderation is key. Probably even moreso with this medical condition.

Sweets

11:05 am
18 Feb 17
Permalink

Hi there. I have unexplained CKD and am 9 years post transplant. I am 59 and only 4ft 10ins tall. I was tiny when i was in end stage renal failure and only around 7 stones. My weight has slowly crept up over the years and I am now 9 st 9 lbs! I am going to try 5 2 from Monday and would welcome your support. Will keep you posted x

Colyn

2:32 pm
18 Feb 17
Permalink

good luck Sweets.

As some encouragement I had my visit / discussion with my consultant the other week. Still stable. Confusingly so now after 3 years after diagnosis. Blood parameters all where they should be other than potassium which was a little high. So, my version of the 5:2 has had no detrimental affect on my kidney condition.

I have now lost about half a stone in weight and I still want to lose more. (now at 12st 7lbs) My weight is pretty much ok where it is but I want to be leaner and fitter so I’ve set myself a pretty stiff target. My target is sub 12st. How much weight loss is down to the 5;2 or the change in medication is a bit debatable but at least I’m heading in the right direction.

Over eating on the “off days” is still a slight issue so posting here gives me an excuse to give myself a stiff talking to on that front.

oatallynuts

4:28 pm
20 Feb 17
Permalink

Yeah, good luck Sweets! Hope you’re finding your fast day OK, don’t worry they get easier!

@colyn
That’s great news it’s still stable, glad to hear everything is well. Your weight loss isn’t bad, it has to be 1 pound a week right? That’s ideal. Keep going strong!

I have been having dizzy spells recently which perhaps wrongly I put down to my medication, so in partnership with my GP we decided giving it a try to come off my medication for a couple of weeks before I saw my consultant. It made me feel worse to be honest so I’ll be back on my medicine with gusto. Interestingly though my BP has remained below target and my consultant was even happy to suggest assessing how I got on without meds. The results of my somewhat reckless experiment though is some of the problems I’ve had are independent of my BP and meds so that is something at least.

I had a PCR test before stopping my medicines which apparently was an improvement, though I forgot to ask for the number, but I’ll get it in a follow up letter in a couple of weeks and let you know.

The weight loss has been surprisingly fast, there’s not much more fat to lose! I’ve always been able to shift it quick luckily but with fasting has been ridiculous. A stone since January, so have reduced to the 6:1 in the last couple of weeks.

So in general I think the 5:2 has helped my BP, I’m just waiting for the news on the PCR! And I don’t need to increase my BP med dose, which is a major mental milestone.

Colyn

6:52 pm
20 Feb 17
Permalink

Good stuff Oatally.

Just a bad week for me this last one where the drive slipped a little> Back on it again today though. 3.4 mile run and generally been eating sensibly today (not a fasting day).

A proper beasting awaits tomorrow with another 3 mile run I think before climbing in the evening. I’m pretty destroyed after a climbing session. I wish I’d known about it earlier. Not sure if I’ll fast on a day like that yet. Tempted though.

I do find my weight varies a bit. Up one day, down the next etc. Our scales aren’t the best but as long as the trend is down and the trousers get a bit looser.

DollyC

8:13 pm
21 Mar 17
Permalink

Hi all,
My daughter has igan and I was wondering if any of you had tried the Dr. Mosley’s “Blood sugar diet”.
I found a couple of research papers that claim a low gi diet (which the Blood sugar diet is, in essence) helps with kidney disease, but was wondering if anyone with IGAN had actually had any experience of this. She is also on prednisolone and has typical side effects, which makes it more difficult for her to lose weight.
Dolly

Colyn

9:25 am
22 Mar 17
Permalink

Hello

I had to look it up and found that I may have inadvertently been following such a diet over the last couple of weeks or so. Well sort of anyway.

In the end I found 5:2 a bit too restrictive and needing a massive dose of discipline for the fasting days and then also the day after.

I have now drifted onto a diet where I’m really looking at reducing my sugar intake, and refined carb intake. So cakes are out, I’ve really cut down on bread, pasta and stuff like that. I’ll have to see how this effects my potassium levels but i’m certainly not feeling any worse for it. In fact since making the changes my weight loss has continued and I’m at my fist target weight of 12 stone. My ultimate target is another half a stone which would be my “fighting weight” if I were a boxer I think.

I think a problem we have is that if you have to follow a low potassium diet it is very easy to slip into eating too much bread and stuff of that ilk because of their relatively low potassium levels.

Anyway, I’m far more comfortable with this method. I still have low calorie days but they aren’t super restrictive as they are on a 5:2. i still need to tweak things and see what effects its having on my blood tests but so far I’m feeling pretty good.

DollyC

8:56 am
29 Mar 17
Permalink

Thanks for your reply Colyn, sounds like reducing high gi foods and consequently cutting out refined stuff seems the way to go, without upsetting stable blood results.
We’ll give it a go…..

Best wishes
Dolly

Colyn

9:18 am
29 Mar 17
Permalink

Hi Dolly

Yes I believe so but I’ll have to wait for more bloods to see if there’s any change.

I do feel better though. My running is improving to the point where my legs are feeling it more than I feel aerobically stressed on some pretty nasty hills that I stagger round here.

For me it’ll be the potassium thing. Such an easy step onto refined carbs when having to be mindful of potassium levels. That side is frustrating for sure.

A further thing I’ve noticed is how addictive that stuff can be. Even now the cravings are still there. I’m not hungry but my body wants the hit.

kre8veme

9:12 pm
20 Jun 17
Permalink

Hi all,
Thanks for your honest posts!

I was diagnosed with a very rare kidney disease 2.5 years ago [less than 50 in the world ever recorded], and only one in the USA. It may be autoimmune related, but they really have no research done. Doesn’t make me feel special at all – still have to watch all my food/protein intake real carefully. Throw recurring gout in with it, and my allowable foods shrink to a small list. My current function is 33%. Like others have said, that does not define me, although I did have to stop working full time in Oct 2015. I am probably not a transplant candidate since my body is attacking my own kidneys.

Currently on allopurinol for uric acid issues [gout], plus two BP meds to assist the kidneys.

I am looking forward to doing this 5:2 way of life, and just gotta believe it will help me feel better. Just did bloodwork last week, and will be curious to see how the next set compares!

Colyn

11:27 am
21 Jun 17
Permalink

@kre8veme

Good luck. 5:2 works but needs a lot of discipline.

I think I need to restart the process a bit. Not really putting weight on but I want to lose a bit more weight and get leaner to help with my various activities.

Just to report my current results have been very positive and that’s partly due to 5:2, reducing sugar, exercise, less refined carbs and a little bit of apple cider vinegar every morning. I cant pin it down to anything specific but some / all of it is doing me good. Here’s my latest results.

EGFR = 21 (usually round the 19 mark)
Potassium = 5 mmmol/L (usually higher say 5.3 mmmol/L)
Calcium = ok (no change)
Phosphates = ok (no change)
Cholesterol – 4.1 mmmol/L (lowest its been in over 3 years)
protein in urine = 0mg/dl!!!! (First time in 3 years)
Blood (red blood cell) count – normal (no change)

So while I’m really happy with the above I’m also slightly confused as to how I’ve achieved it. More of the same I guess but I wish I knew what the major contributor was / is.

Anyway my consultant doesn’t dont want to see me for 6 months now which is both encouraging and a little worrying at the same time with the way the NHS is being managed here in the UK.

kre8veme

12:48 am
23 Jun 17
Permalink

@colyn
Thanks!
I just picked up lab results from blood work last week.
GFR is 35%
Potassium is 4.8 mEq/L
Calcium is 10.4 mg/dL
Phosphorus is 2.8 mg/dL
BUN is 29 mg/dL
Creatinine is 1.44 mg/dL
Protein in urine is 409 mg/dL

They ran a special test that I will be discussing with dr next Tues.

Today is my 3rd fast day, and so far only 150 calories in the last 20 hrs. I will do a small meal in about an hour ~250 calories, then nothing for another 14. Feeling okay with all of this, we’ll see what the scale says tomorrow!

kre8veme

2:15 am
18 Jul 17
Permalink

@colyn
Had appt with new nephrologist, on 7/27.
There is an issue with blood calcium levels that is not coming down. We have decided to stop Vit D3 supplements [calcium supplements were stopped in April], and there will be retesting next week with added special tests. Keeping fingers crossed that the problem is something like a parathyroid issue, and not multiple myeloma.
We just got back from a 2 week camping trip. I managed to do 3 fasting days, and ate thoughtfully the rest of time. Today is fasting day [less than 400 calories in last 20 hrs] and will have maybe 100 more before breaking fast in another 14 hrs]. Feeling good, even did full gym workout today plus 5 hrs at paying job.

Colyn

10:03 am
18 Jul 17
Permalink

Good luck kre8veme.

I’m not much in the know about calcium issues as thankfully i dont seem to be having a problem with it. I expect I might in the future though.

good to hear that you’re feeling good though.

Not sure if this could be of any assistance but I pretty much gave up on dairy. No milk at all for me now and not much else either. I do have a bad cheese affliction though. I did this initially to get my cholesterol under control. It did help but may have also helped me avoid problems with phosphates.

My dietician was concerned that I may not be getting enough calcium so for morning porridge and snacks I use this stuff

http://www.oatly.com/products/united-kingdom/oat-drink-fresh/

They do a non calcium supplemented one too. I think the stuff is fantastic, especially when cold. It looks like old bath water but tastes really nice

kre8veme

3:59 pm
18 Jul 17
Permalink

@ colyn
Thanks for your words. Like you, I don’t really do dairy. My diet allows for 4 ounces a day, be it milk, ice cream, yoghurt, or cottage cheese. Most days it is none of those. Cannot have cheeses due to the high phosphorous levels, which is fine by me, as it is not an addiction. My multi-vitamin supplies 22% of my calcium needs.

Apparently the Vitamin D supplements [taken because those levels are low] may be blocking the absorption of the calcium into my system, giving high blood levels. At least that is what they are hoping [me, too!].

Your oatly products look great, but don’t know if USA has them.

oatallynuts

6:35 pm
19 Jul 17
Permalink

Sorry for being non-communicado, I was waiting back on results but my consultant didn’t feel the need for sharing, he seemed pretty happy last time. I’m going to insist on getting the changes next time (later next month).

Colyn, fantastic to hear the function is up and the protein down, glad you’ve found a way to manage yourself. Hopefully the cuts in the NHS won’t be lasting too much longer either 🙂

Kre8veme, good to hear you’re getting some positive results by the sounds (increased GFR)?

Too add to my list of ails I’ve recently found I’m gluten intolerant which after cutting out I’ve felt amazing! I have stopped my weekly fast while my body adjusts… but after getting a pretty toned physique from the fasting and exercise which is ever so slightly obscured now I’m sure I’ll get back around to it :). Kre8 – I found after a couple of months one fast day a week really kept up the results while making it more manageable. I guess with the gluten thing OatallyNuts could be the next food range coming to the shelves soon 😛

I’ll get the results from my consultant next time one way or another and let you know the difference the fasting made!

Cookoo

8:46 pm
26 Nov 17
Permalink

Hey I found this post really late but it’s great to know you are having success with 5:2. I also heard that the condition affects people differently but it’s such a support to hear how it affects you since it can feel a bit hard trying to puzzle it out alone. I am going to try the turmeric Oatallynuts since I have tried turmeric lattes and they are really a nice way to soothe when coos hit and warm up. Colyn I’m a big porridge fan too. Interesting to read about bicarb since I started that but found the taste quite difficult to stomach but heard it slows down the decline by 2/3’s.

I have IGAN and although I had 60% function for ten years it then dropped to eGFR 32% in 2015 and then to 23% this year. I was feeling really tired and needed to pee often so doctor tested me for diabetes. I joined Ifast Australia and I’m in week 8 of the 12 week course. This is a combo of eating the blood sugar diet (a Mediterranean diet), 5:2 with 800 cals on fast days as well as high interval training and relaxation. The idea is you only think of fasting for two days but because you fill up on more greens up to 800 cals it’s more manageable. The other days you can eat as much as the Mediterranean diet as you like given its all healthy. You can have a glass red wine and a piece 85% dark chocolate. Fruit is up to two pieces a day snd no fruit juice. Protein is high quality and an adequate amount.

After detoxing from free sugars I felt amazing and I lost 7kg and just had eGFR test and I’m 36% so I am very happy. I just feel buoyant in mood too and this was before I knew the improved result. I believe that it’s the carbs and sugar that affected me since I feel well and don’t have this urgency to pee. although I get tired I’m not exhausted like I was and I’m still working full time.

In my experience ensure wherever possible to stay out of stressful situations. I was in one for four years and this relates to my drop from 60% to 32% eGFR after a stable 10years of 60%. A healthy denial is a good way to manage what can sometimes seem an uncertain time as well as making time and space to rest and research ways to improve health. I have small amounts of sea salt since I read this is important for health with its trace minerals. But I stay clear of table salt which has few minerals in and I use lemon and lime juice and fresh herbs to flavour food too. Fats are considered good with an emphasis on olive oil and some full fat dairy. Cakes, sweets and cereals are out apart from porridge 🙂 and Bircher muesli.

I can update you at the end of the programme. I now don’t need to see my consultant for another 6 months but I will get cholestrol tested since it was previously high. Since the high interval targets tummy and visceral fat I expect my levels to have dropped.

I wish you all the best in your journeys. Hope to see you online again sometime.

kre8veme

4:01 am
27 Nov 17
Permalink

@ Cookoo
Yep, stress is a real bugger when it comes to your health, and even more so when you have some issues.

Sometimes you have to look at the long run to see the value of any lifestyle change/eating plan. While it seems I have hit a plateau for weight loss, I feel good. For this past week I have forgiven myself for poor food choices, and know that beating myself up about it all has no positive outcome.

Recently the doctors have determined I have some blood protein issues, in the bone marrow, so now that is added to the plate of things to watch. There will be fancy blood tests every three or four months. No more calcium supplements. If all goes well, there will be no problems. Otherwise it could morph into lymphoma, or multiple myeloma.

But I choose to look at the positive. My kidney function remains stable, my gout is at bay today, my joints are not too painful. Grateful for all of that!

FastFox

10:30 pm
30 Dec 17
Permalink

Hey there,

So glad that I found this thread. I have a chronic kidney disease called PKD or Polycystic Kidney Disease. I have multiple cysts on both kidneys and they continue to multiply. Cysts tend to result in a result in kidney function. I’m lucky that my BP is under control without requiring medication.

My main issue apart from occasional discomfort in the flank area is that I get such bad bouts of bloating. I’m assuming that this is connected? I know when I fasted before that the bloating wasn’t as bad or as frequent.

kre8veme

1:34 am
31 Dec 17
Permalink

@fastfox
This forum is a great source of information for fellow kidney dis-ease patients, no matter what form it is in.

I can only relate what has worked for me, as the bloating issue is sometimes a problem. Eliminate or severely reduce use of caffeine. Coffee, teas, cola drinks, chocolate. This coming from someone who used to drink 64+ ounces of coffee per day, down to 10 oz. only. No chocolate. Also, watch the sodium intake. Try to get exercise everyday, along with the proper hydration.

Hope this helps you somewhat.
Any other thoughts from people?

Colyn

3:58 pm
6 Jun 18
Permalink

Hi All

back again and thought and update is probably in order. Been quite a roller coaster since my last post.

I’ll be brutally honest I struggled with the 5:2. A bonkers lifestyle didn’t quite fit with the required level of discipline the diet needs.

So things slipped but that also coincided with a very rough time at work. Too much stress to be honest. The result was weight gain through lack of exercise (climbing buddy went AWOL) but also as I found some struggles with what I believe is my medication.

Back in June my consultant increased my dosage of Doxazosin to 2mg twice a day (I think but need to check) as an extra safety net for blood pressure management. Subsequently a period of heavy bloating, constipation followed by diarrhea, wind crept up over a number of months. This also coincided with what I can only describe as tendinitis in my legs. I was basically stiff as a plank and had some sharp pains running down the back of my legs and knees.

Eventually I decided to sort myself out and I’m still in the throws of doing that. New job, busier but none of the hassle that came with my previous role and pushed for an appointment with my consultant. Blood tests have shown that my potassium is a little high but also blood has become a bit too acidic. I’m also more dehydrated than normal. Kidney function was still steady thankfully.

So my Sodium Bicarb medication has been increased and that has resulted in some pretty immediate improvement with the leg pains. I’ll come off the Doxazosin in a few days and start some Moxonidine and see how that goes.

I need to lose weight again so I’m back with intermittent fasting but I’m trying a variation where you only eat within a relatively short window during the day. I’m a few days in and it seems ok and a bit easier discipline wise. So we’ll see how it goes as I start to up my exercise levels as well.

kre8veme

8:29 pm
7 Jun 18
Permalink

@Colin- good to see your post. Sounds like you are working things out. We have to have patience, and realize each has to tailor the program to work with our lifestyle, and little idiosyncrasies. Thanks for reminding me!

I continue to deal with high potassium for no apparent reason. Will be doing major lab work next week in preparation for appt with hematologist/oncologist.

Hope everyone has a great day!
Ginger