Need advice please gfr 16

[Peri5]

Hi everyone.im hoping I could get some advice and help.i received my test results and my gfr has dropped to 16..it was 19 in March of this year..it drops a couple of numbers every year.the electrolytes are normal,potassium sodium etc..abit of background.i have Lupus diagnosed at age13yrs.now I'm 41.regarding symptoms I don't have many yet.im very worried as I wish to delay dialysis for a bit.can anyone share anything that has worked for them with regards to diet,supplements,homeopathic.and also exercise?is there a way the process can be slowed down?I know eventually will have to take treatment.i just want to try the best from my side.would appreciate feedback.many thanks.

[Bunkin]

Hi, I follow a program called the kidney disease solution which I ordered online. I take many herbs and supplements and exercise. I recently started taking Chitosan which is supposed to help remove creatinine. Hope this helps you. Prayers for you. God can do anything!

[Peri5 in reply to Bunkin]

Hi Bunkin

Very kind of you to respond to my post.i see that you have mentioned Chitosan.how has this been been working for you?have you had improvements with your lab results?I don't know much about it.is there a minimum dose you need for it to be effective?since I had my letter through with my results I feel terribly scared but I know if I don't do anything I shall go down quicker.the consultant wants to discuss renal replacement options.iv bought Camoline and nettle tea.hoping that will start to remove some of the creatinine in my blood.the doctors here in the UK do not advise on appropriate diet and fluid intake im trying to work at it on my own.i am vegetarian but this doesnt seem to make a difference.can I ask how much fluid so you drink daily?God bless you for sharing this knowledge.i hope you are well.

[Bunkin in reply to Peri5]

I drink at least 64 oz of water a day. Usually more. I take 1000 mg of Chitosan a day. My numbers have improved since starting Chitosan.Drink 1-2 cups nettle tea. Plus astragalus, CoQ10, Vit D, Vit E, selenium, sodium bicarbonate, alpha lip pic acid and a multi vitamin. I follow a program called the kidney disease solution which I bought online, so these supplements are geared for my disease which is polycystic kidney disease. Hope this helps you some! You're in my prayers. God can do anything

[Peri5 in reply to Bunkin]

Hi there..thank you so much for your reply.i did manage to download the kidney disease solution.it is very informative and contains useful information.i see you are taking lots of supplements.did you get the ok from your consultant?over here they steer you away from using a holistic approach.its a shame as it beats harsh treatments.I'm very interested in Chitosan.does it have any side affects?it seems to be controlling things for you.nice to hear your results have improved.i certainly need to drink more.thank you for your kind words.i hope we all stay stable for as long as possible.

[Bunkin in reply to Peri5]

Hi,

I started the program before I ever went to see a nephrologist. He know I take them. I just recently started Chitosan. I haven't had any side effects. It also is supposed to improve high blood pressure which I've been fighting awhile. It has helped with that also. As for doctors approving or not, not sure if mine does or not . He's never said anything about it if he did and it wouldn't matter to me anyway. I do my research and I'm going to do what I think is best for me. Hope this helps!

Merry Christmas!!

[Peri5 in reply to Bunkin]

Hi Bunkin

It's really good you did your research beforehand.if it keeps your condition stable that's what matters.its very encouraging to hear that chitosan is having a positive effect.i didn't know it aids with blood pressure.i shall certainly look into this supplement.i agree about doctors.there only input is to monitor the blood tests.this has been the case with me.no other additional advice on nutrition.i wanted to ask with regards to nettle tea?can it effect potassium levels.im having it alternate days and only one cup..Happy Christmas to you too..

[Bunkin in reply to Peri5]

Nettle tea doesn't have much potassium or phosphorous. It is a natural diuretic, lowers blood sugar, astringent, anti anemic, stops bleeding. I drink a cup every day!

[Peri5 in reply to Bunkin]

Thank you for that info..alot of benefits to this tea.its good stuff..

[Sally10255 in reply to Bunkin]

I take Chitosan before meals, st least that is what it says to do. You? I also chew 1 or 2 Tums if eating something that bothers kidneys...dark green leafy plants, nuts, tea.

[Bunkin in reply to Sally10255]

Yes I take befor meals. I don't do Tums as I have kidney stones also and tums gives calcium!

[Sally10255 in reply to Bunkin]

Thank you,my doctor suggested Tums to keep from stones. I am not normally a stone maker, just had a 6 mm that was wreaking havoc. Best of luck!

[Vikki1313 in reply to Sally10255]

Did ur dr. Tell u to use Tums. If u read up on all antacids they say they can make kidneys,worse. Even if proscribed. I think if ppl R on dialysis they help to increase calcium. But not great for pre. Dialysis.

[Sally10255 in reply to Vikki1313]

My kidney doctor suggested Tums if eating things with dark green leaves or things that had dark green leaves...spinach, nuts, tea, I forget what else. He eats a spinach salad every day and does the Tums

[Zazzel]

Being that you have had an autoimmune disease for so long, I'm sure you have tried most everything, but just in case I'll throw this out, are you gluten free and dairy free? Do you have any other food or environmental intolerances. Those can all affect autoimmune disease and cause inflamation.

[Peri5 in reply to Zazzel]

Hi Zazzel

Thank you for your kind reply.to be honest iv never known if I have any food intolerance.in the UK they do not conduct such tests which could actually be vital in controlling the disease.there is no dietary advice even though im at nearly stage 5.i just have tests done every 4 months and they wait for things to decline.the doctor is referring me to the advanced clinic.im very scared.

[Beanbag5]

As someone who also lives in the U.K. I get what you mean about being nervous but they don’t tend to intervene unless you’re GFr is around 7 or your potassium and phosphate are causing an issue. Be cautious around the use of Herbal remedies as they usually do more harm than good as they strain your kidneys. Although diet is great for controlling your levels of potassium and phosphate , it’s impact on function isn’t as prenoumced. People always suggested lots of veggies which is great etc but if you’re really concerned, protein is what you want to focus on as in the end that’s where the main problems lie, leaking protein

[Peri5]

Hi there..yes totally agree with your post.its tough dealing with a decline.i received my results by letter 5 days before Christmas.it was terrible timing.i agree about your views on herbs.got to be careful.i am just researching and seeing if there is anything I can do to improve my general health and keep going.diet wise im still finding it difficult to find out what should be eating.i don't eat meat so that takes out heavy protein.i feel at present some of the essential nutrients are lacking and need to focus on that.yes I agree protein leakage is the contributes to decline .i have +2 protein everytime it's checked.the doctors have me on the same medication for years.now that the results indicate I'm close to stage 5 they want to refer me to the advanced clinic.im not sure what they will do..i am trying to drink 2 litre water.will get tested again.if I could get creatinine slightly lower that will be a start.is there any routine you follow to maintain your function?

[rabbit01]

Hello, just saw your post. I too am at 16% GFR. I have IGAN the doctors suspect, but I have not had a biopsy to confirm it. I was only diagnosed 3 years ago and at that time I was already down to 21%. It was a complete shock as I only went for a cholesterol check and found out I was at stage 4 CKD! Like you my kidney function is declining gradually, and the consultant has suggested I start thinking about what sort of dialysis I would prefer. They seem to be pushing the PD. Again, like you my other levels are all pretty much fine although PTH is now very high and haemoglobin is quite low. I just take fish oil capsules and when I get kidney pain or feel sick I drink lemon and ginger root tea which seems to help. The symptoms I get are that I am very tired and most mornings I wake up feeling very sick which usually wears off during the day. I am 51 and live in the south east of England. I still work full time but last year I was finding the commute to London really tough and I was feeling sick and tired and had two weeks off sick. My company have been really supportive and as I work on computers I am able to work from home 4 days each week so I only go into the office once a week. I have never been given any advice from the NHS about diet. I asked a few times and was eventually told that at my stage it was too late and I should just go on eating as I did before. I did ring the renal dietician at the local hospital but aside from being very nice she did not offer much in the way of advice other than try to limit salt.

[SN23 in reply to rabbit01]

Regarding PTH, are you taking any over the counter vitamin D? For my son who has iGAN too that turned out to be the easy fix. Please check with your doctor if you can do that. Secondary PTH goes up as vitamin d declines.

[rabbit01 in reply to SN23]

That is interesting, thanks for writing. No I am not taking any vitamin D. I did ask the consultant when the PTH started to rise in May this year and he just said it would not make any difference in my case as the vitamin D has to be "altered" by the kidneys and that was the problem. So there was enough raw vitamin D in me but my kidneys were not making it into what ever they make it in to!I cant remember the exact wording but that was roughly what he said. I will ask again when I see them in March as the PTH has really shot up over last few months. Thanks again.

[Peri5 in reply to rabbit01]

Hi.nice of you to respond to my post.as we are both at the same level it will be good to share experiences. Regarding my symptoms I feel tired but not so much as I can't get out of bed.its tricky as the doctors ask how I feel.hard to give an answer.i guess it can be a silent thing that creeps up.i work part-time.my employers don't know the extent of my condition.im sure they will be understanding once told.im just a private person.i will have to take them aside at some point and explain.iv not had the in-depth talk with the consultant regarding renal replacement options.im sure he'll push me for pd too.do they do special tests when you are refered to the advanced clinic?I live in the Kent area and am looked after by guys hospital.iv started nettle and Camoline tea,it's good stuff.im just wondering if there is a way to excrete creatinine naturally in a safe manner apart from the obvious Water.i like you asked the dietician about foods etc..it seemed very confusing and nothing came out of it.yes same advice to me.my Dr says eat everything.i don't eat meat.but still my creatinine is so high.at 279.i believe it is due to scarring caused by lupus.iv kept these damaged kidneys going for coming up to 30 yrs..shall keep in touch

[Vikki1313 in reply to rabbit01]

Hi Rabbit

I visited and signed on to Davita.com. It is a,wonderful site. With diets and nutrition values for every food. Diet is,so very important. The list of foods which are bad for CKD. Also a list for better choices. U can sign up for a class. Then u will be given a counselor. If you choose to. Do try it You won't be sorry. Vikki1313

[rabbit01 in reply to Vikki1313]

Thanks very much. I will certainly give them a try. All the best.

[toeragthecat21]

not an easy position for you to be in..lupus is not nice.and can cause problems everywhere..im sure you must have a specialist...so keep diet low in fat avoid ibruprofen like the plague ..damages kidneys..keep salt very low..happy new year..take care

[Peri5 in reply to toeragthecat21]

Thanks so much for your kind reply..yes it's been tough living with lupus.its very deceiving in a way as a person may look ok on the outside but inside there is a major problem.my case was diagnosed way too late hence damage had been done.i have a specialist who has monitored me for nearly 30yrs.i am looking into diet and salt intake is low.trying to drink a bit more.i think that's something to work at.Happy New year to you..best wishes

[toeragthecat21 in reply to Peri5]

no problem..glad to help.happy new year