IgA nephropathy troubles

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IgA nephropathy troubles

Postby PolarBoy » Wed Nov 11, 2015 2:13 pm

Hi all!


Sorry for my bad english. Didn't find any good norwegian source on this illness.

I'm 44 year old male from Norway and exercise regulary. Low blood pressure, practically zero fat on my body and in general very healty.
I do however have IgA nephropathy. They did a biopsy some years back. Every six months i go to my local hospital for regular checksups for some years now.
I take Triatec and Omega 3 that has worked well it seems. Today however my vist at the hospital
didn't go very well. My creatinine levels are slowly getting higher. No spike however, but just slowly getting higher as expected,
but my doctor tells that my kindneys probably only will last aprox. five or so more years!!!

That was a real chock to me. He tells me that he will send me to a bigger hospital
with more experts in this area and they will put me on medication. They will of course contact
me for a consultation in the near future. The problem is that the five year timeframe comes as a total surprise on me.
Five years is not what i expected nor did the previous consultations hint at such a timeframe for my kidneys.
Very little explanation and goodbye. I tried to contact the bigger hospital, but their experts in this area where busy today.

Does anyone of here on this forum have an good understanding of this illness. My doctor seem to have failed to inform me
about the extreme seriousness of this illness and timeframe in earlier consultations. An just suddenly dump on me this five year lifespan on my kidneys
and tells me that the bigger hospital will contact me and then says goodluck and goodbye.

I have no idea what my creatinine levels are, but all my other levels like cholesterol etc. are very fine says the doctor.
Again i'm very healty and live an active life. In all probability can i only expect to live an active life 3-4 more years?
This horrible news scares the shit out of me as i consider myself still young and has no health issues at all,
but that will change dramatically in only a few years it seems.

Are there ways to halt to an extent this outcome. New research in the area or for example chinese immunotherapy
or the company Fuma Natural that has these herbs treatments. Are the success stories just a hoax?

Hope anyone can share some light on this matter as i'm very shaken by these news from my doctor.
PolarBoy
 
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Re: IgA nephropathy troubles

Postby wagolynn » Wed Nov 11, 2015 3:53 pm

Hi PolarBoy,

This link may be of some help http://www.niddk.nih.gov/health-informa ... facts.aspx

I think the 5 year comment is the worst case scenario, I don't think that anyone can accurately predict at what rate your condition will progress. It is likely , at some time, it will progress to kidney failure. In kidney failure, the kidneys function can be replaced by dialysis or where appropriate a transplant.

I would suggest, at the bigger hospital you should get more involved in your treatment, and ask questions to enable you to understand it better. The more you understand the better your chances of remaining reasonably active, many people remain active and continue to work whilst on dialysis.

Best wishes.
wagolynn
 
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Re: IgA nephropathy troubles

Postby PolarBoy » Wed Nov 11, 2015 4:28 pm

Thank you for your reply and your link. I really hope the doctor was referring to the worst case scenario. I will get more involved indeed when i get to a bigger hospital. The focus i guess is to try to somewhat halt the rising creatinine levels. Has anyone here tried the products from Fuma Natural? Are these just 'sugarpills' and false hope or might they actually work? Anyhow can these herbs make my illness worse? I'm just firing a shot in the dark here.
PolarBoy
 
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Re: IgA nephropathy troubles

Postby wagolynn » Thu Nov 12, 2015 4:40 pm

Hi PolarBoy,
I would leave herbal stuff in the dark. :)

This link is very good http://www.edren.org/pages/edreninfo/ig ... opathy.php I find all their stuff accurate.

"Is there anything I should/could be doing to help my condition?" is a reasonable question to ask your new consultant.

Blood pressure is one thing to look at, 130/80 or lower is what you should be looking for. This usually involves elimination added salt from your diet. At your stage plenty of fruit and vegetables will be what I think they will recommend, and they may ask for a high fluid intake. However, ask, and keep asking until you have a clear picture of what is required.

Let us know how you get on.
wagolynn
 
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Re: IgA nephropathy troubles

Postby sporti » Fri Nov 13, 2015 2:19 am

Hi

Not sure much help but no one can predict when your kidneys will fail. To say five years I really shouldn't take much notice. I was told in my early thirties would be on dialysis soon but my kidneys didn't go down to 9% till I was in my sixties so keep your blood pressure low and your weight down plus I kept to very low protein and exercise is all I can suggest oh and low salt. Protein restriction is controversial but do what you think best. Please keep away from anything herbal. Good luck
sporti
 
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Re: IgA nephropathy troubles

Postby PolarBoy » Sat Nov 21, 2015 10:48 pm

Hi all :)

Thanks for all your comments :)

My doctors now tells me that my kidney functions is fine, but my creatinine level is very slowly increasing.
They can't predict any timeframe yet. Best scenario is that i never need dialysis,
but it is hard to predict. Good health in the future is of course required.

I exercise, eat lots of fish and Omega 3, not much meat, drink lots of water, non smoker etc.
I'm very fit and in good condition and has low blood pressure.

Regarding food, my doctors tells me that i can eat whatever food i like, but stress on water, water, water :)

How far should i push my body when training? I'm very careful with water intake and not getting dehydrated.

My doctors has put me earlier on Triatec (1 daily) and now also on Sodium bicarbonate (3 daily).

Regarding herbs. I bought a two month usage of Kidney+SP, Kidney-Tonic and Red Ganoderma.
Waste of money probably, but i will consult my doctors about it. I'd like to try it a couple of months and see if there are any effects at all.
If there are no harmful sideeffects regarding my kidney trying these products why not try it a couple of months and see.
It seems to work on a few, but mostly it has no effect at all i guess.
PolarBoy
 
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Re: IgA nephropathy troubles

Postby Chris In Trowbridge » Sat Nov 21, 2015 11:15 pm

Thats good news then, did you ask what creatinine levels were or egfr ?
Chris In Trowbridge
 
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Re: IgA nephropathy troubles

Postby Jason1976 » Mon Nov 23, 2015 4:31 pm

I was diagnosed with IgA Nephropathy in 2002 -doctor told me I had about 10 years and I was also scared shitless, so I know what you're going through. My condition was pretty much stable for the last 10+ years until about 1.5-2 years ago. Then the creatinine started increasing and its been a rollercoaster, especially the last 6 months when it took a steep climb. Now I'm at end stage kidney failure, and I'm doing some donor evaluations to see if my sister is a match. I'm at the stage when I can go to the ER anytime for emergency dialysis - kidney function is probably <10% now.

I haven't done much herbs or other supplements, mainly because my nephrologist has warned me not to experiment.Nobody at this point knows if reducing protein at this stage will help, but definitely the advise about keeping blood pressure low and to continue the meds prescribed should be followed. Because its such a long term thing (believe me, the shock wears off after a while) I sometimes forgotten I have a kidney disease, but thankfully I've kept all my appointments the past 13 years. Doc says with IgA Nephropathy, patients are pretty healthy and asymptomatic, until one day it crashes and they a taken to the ER and diagnosed with kidney failure.
Jason1976
 
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Re: IgA nephropathy troubles

Postby wagolynn » Tue Nov 24, 2015 10:04 pm

Protein is not usually a problem in the UK, it can be in America, they tend to eat a higher protein diet.
wagolynn
 
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Re: IgA nephropathy troubles

Postby PolarBoy » Tue Nov 24, 2015 11:39 pm

Regarding food. I don't see i can do more on that front other that turn into a vegetarian. Will that have any effect?

It seems that this illness is somewhat different for each individual. Some get bad kindey function rather fast other not.
My doctors pretty much says at this stage any drastic food change will have no effect.
They don't want me on a diet etc.

Regarding herbs. As long as i also take the prescribed meds then it shouldn't be a problem regarding the kidneys i guess.
For those on a diet regarding kidney illness i see that on the official Norwegian healtcare website also recommend herbal tea as a supplement under section what to drink.

The only 'problem' at this stage is the slowly rising creatinine levels.
PolarBoy
 
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Re: IgA nephropathy troubles

Postby wagolynn » Wed Nov 25, 2015 4:11 pm

Hi PolarBoy,
Turning to a vegetarian diet will have no known benefit, and has the disadvantage that you are likely to be starved of protein. You need sufficient protein for your body to do routine maintenance which is vital.

I still think it is best you stay away from the herbs, none of them have been tested in the same way medication has to be, and who knows what effect they may have, the suppliers/packers don't know, and I suppose they don't care along as people keep purchasing them.

There is nothing magical about herbal tea, other than it's usually drunk without milk, which, on dialysis, is not recommended. Dairy products in general, are not recommended, when on dialysis, this is because dialysis doe's not remove Potassium and Phosphate therefore the patient has to reduce their intake. Both are essential to life, so reduction in intake must be done under supervision. Most of our 'normal' foods contain some Potassium or Phosphate or both. The main point is the dietary changes are to make up for the dialysis failings, not to improve the patients kidneys.

Look at information (official NHS/government stuff) about five-a-day, again this not so much for your kidneys, but to maintain your general health. Whilst it is not 'sexy' (5-a-day) it works.

Best wishes
wagolynn
 
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Re: IgA nephropathy troubles

Postby Dave n Constance » Tue Jul 19, 2016 2:03 pm

Hi,
you are correct that diet can play a part in IgA Nephropathy. Few specialists realise that there is a link between gluten intolerance and IgA Nephropathy. 2 peer reviewed internationally respected groups of scientists have published a link between gluten intolerance and IgA nephropathy in Nephrology journals.
Please get a test to see if you are gluten intolerant (Caeliac) BEFORE you go on a gluten free diet. If you are a caelic then you must have ZERO gluten, not even trace amounts, as the gluten antibody is a physically large molecule and it scars the fine filter mechanisms of the kidneys.
Research has also shown benefits of a vegetarian diet.
Your specialist sounds incredibly narrow minded. Traditional Chinese Medicine has also found to be helpful for some.
Do your own research and keep an open mind.
Cheers
Dave :D
Dave n Constance
 
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Re: IgA nephropathy troubles

Postby Tibbs » Wed Jul 20, 2016 8:02 pm

Dave n Constance wrote:Hi,
you are correct that diet can play a part in IgA Nephropathy. Few specialists realise that there is a link between gluten intolerance and IgA Nephropathy. 2 peer reviewed internationally respected groups of scientists have published a link between gluten intolerance and IgA nephropathy in Nephrology journals.
Please get a test to see if you are gluten intolerant (Caeliac) BEFORE you go on a gluten free diet. If you are a caelic then you must have ZERO gluten, not even trace amounts, as the gluten antibody is a physically large molecule and it scars the fine filter mechanisms of the kidneys.
Research has also shown benefits of a vegetarian diet.
Your specialist sounds incredibly narrow minded. Traditional Chinese Medicine has also found to be helpful for some.
Do your own research and keep an open mind.
Cheers
Dave :D


This is interesting - can you link to the research that show the link between gluten & IgA, and the one showing the efficacy of Chinese Medicine please?

Thanks :)
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
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Joined: Wed Nov 30, 2011 11:59 am

Re: IgA nephropathy troubles

Postby Dave n Constance » Sat Jul 23, 2016 12:10 pm

Hi all, the evidence is compelling to have a low antigen diet. ie if you are celiac, avoid ALL gluten. This will help with IgA Nephropathy. (Also called Berger's Disease)
As requested, I have included the links to all these papers.
1. Ferri C, Puccini R, Longombardo G, et al. Low-antigen-content diet in the treatment of patients with IgA nephropathy. Nephrol Dial Transplant 1993;8:1193–8. http://ndt.oxfordjournals.org/content/8/11/1193.abstract

2. Pierucci A, Fofi C, Bartoli B, et al. Antiendomysial antibodies in Berger's disease. Am J Kidney Dis 2002;39:1176–82 http://www.ncbi.nlm.nih.gov/pubmed/12046028

3. Gluten sensitivity in patients with IgA nephropathy Hilde Kloster Smerud, Bengt Fellström, Roger Hällgren, Sonia Osagie, Per Venge and
Gudjón Kristjánsson Nephrology Dialysis Transplantation Volume 24, Issue 8 Pp. 2476-2481 http://ndt.oxfordjournals.org/content/24/8/2476.long

4. Ots M, Uibo O, Metskula K, et al. IgA-antigliadin antibodies in patients with IgA nephropathy: the secondary phenomenon? Am J Nephrol 1999;19:453–8 https://www.karger.com/Article/Pdf/13497

5. Increased Risk of End-stage Renal Disease in Individuals With Coeliac Disease Adina Welander; Karl-Göran Prütz; Michael Fored; Jonas F Ludvigsson Gut. 2012;61(1):64-68. [urlhttp://www.medscape.com/viewarticle/755103_2][/url]


I hope this is useful. Chinese medicine links will be done on another night......
Cheers.
Dave n Constance
 
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Re: IgA nephropathy troubles

Postby Tibbs » Sun Jul 24, 2016 11:09 pm

They're fascinating, thank you. I'm on a low carb diet, for weight control, but I'm glad it has a secondary benefit.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
Posts: 1082
Joined: Wed Nov 30, 2011 11:59 am

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