My eGFR has been monitored for the past year and has gone from 56 to 52 (based on 6 measurements, always a bit down, never up). Was initially referred to a consultant but he wrote right back saying he wasn't worried about my condition and did not need to see me until my GFR was down to 45. He recommended an ultrasound scan so that I might be reassured that my kidneys appeared normal (his words). This has indeed proved to be the case, although the sonographer tells me that at this early stage of the disease often nothing shows on an ultrasound.
As far as I am aware, no further investigations have been planned - only monitoring of GFR every few months. This leaves me wondering what is causing my CKD in the first place. Should I press for a diagnosis of the underlying cause? Is this important?
Thanks
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Poirotte
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Hi my gfr is at 60 now it was 57 when first diagnosed...I have osteoarthritis and was on a drug called arcoxia which my dr says caused it.... so I was taken of the drug...Ive also had scan on kidneys all seems ok there..but trying to get any help seems impossible...what symptoms do you have and how did you discover your gfr rate....I am on no drugs for my osteo arthris which is driving me mad and so painfull I take gabapentin.... but doesn't help arthritis ..I saw my gp last month and asked for drugs just for some relief of my arthritis..and was a no no because of the kidneys...Lesley....
Hi..My Gfr is around 30 ish....and I have bad pain from my arthritis, I used to take Arcoxia , which was good, but was taken off it, when it was found my GFR was around 37, I now taken 1000mg a day of Naproxen, which is very much safer, but not as good, but its certainly better than nothing, I have regular kidney stones anything from 3 to 8 a year...and then take Voltarol to help with the pain, but my GFR then goes down to 25 for around 5 days, and then recovers slowly to 35 on a good day, when I am down to 25 I feel very washed out and am in bed by late afternoon....eat more salads, that has helped me a bit...good luck Alan
There is no easy way to say this but naproxen is not a good drug with regard to kidney function nor is voltarol or in fact any of the anti-inflammatories. The only one that is safe is bromelain a natural anti-inflammatory drug. The longer you take these drugs the worse your kidneys will become.
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so sorry to hear about your pain. I too have some arthritis in my foot (only there, thankfully) and have a sense of how awful it can be. But I've never taken drugs for my arthritis, which I suppose must be very mild. My gfr was discovered when I had blood tests to find out what kind of arthritis it was. I don't have any of the more common causes (high bp, diabetes).
I have ckd stage 3 i was diagnosed about 3 yrs ago through blood tests I'm monitered every 4 months I had to get my blood pressure tablet changed and my kidney leveles dropped to 40 my usual gp was on leave and the locum was so worried she rang the hospital while I was in the surgery, I got an appointment for next day I imagined the worst, the specialist was lovely hhe really put me wt my ease he said he thought my levels had dropped because I had had my blood pressure tab was wrong for me low and behold hevwas right I've never been so relieved in all my life.
It makes me wonder if fibro has got something to do with ckd stage 3 your about the 4th person on diffrent sites who have said they have this, the speciaist couldnt say how I'd got it , now I'm left wondering is it due to my fibro
thank you for replying, it is good to hear other people's experiences. I can understand you relief at having found that changing the bp medication helped. I just wanted to say that I don't actually have fibro(myalgia?) - I only have some mild osteoarthritis in my foot. Lesley above also mentioned osteoarthritis. In her case, the drugs she was taking for the arthritis affected her kidneys, not the arthritis itself.
Hi weirdly enough i also have fibromyalgia. Have a egfr of 46 so ckd3b. Have other issues too though so don't know if fibro an issue. Was just surprised to see it come up a few times.
Hi Poirotte, I went through exactly the same as you when I was found to have Stage 3 CKD a couple of years ago - GFR about 52 - 55 over several measurements. Like you, I was told it was 'nothing to worry about' and felt like my worries were not taken seriously.
There seems to be no cause for my CKD, as my lifestyle is very healthy and I have no underlying health issues. It's very frustrating to have no answers as to the cause, because it means there is nothing I can do to try and stop the CKD getting worse.
My diet was already healthy, but I've cut out red meat completely now and eat loads of fruit and veg - far more than my 'five a day'! I don't know if this is helping, but my last GFR reading was slightly better.
Apparently our condition is 'very common' and many people don't even know they have it. Also a GFR at our level can stay fairly stable for many years, so try not to worry (I know, easier said than done).
Hello CPL61 - yes, it sounds like we are in very similar boats! From all I gather, what is important is indeed whether or not the gfr is stable (ie with 'normal' fluctuations). The NICE guidelines for referral specify a decline of 5 points in a year or 10 points in 5 years as criteria - not sure how they are followed in practice though.
So, I am concluding that I'll probably not worry about causes unless I see it going down (mine did decline by 4 points in one year - just one point short of meeting the criteria - and without ever fluctuating 'up').
From what I read, also, dietary adjustments at stage 3a should me made only to counteract the more-than-tripled risk of cardiovascular disease. Kidney-specific diets are not advised at this stage. Sounds like you're doing just the right thing by cutting out red meat and eating lots of fruit and veg
Hi I'm a ckd3 have been for 5yrs I normally have a fr of 43/46 , last one I had went up to 57 , so I wouldn't be to concerned ,it does go up and down sometimes, I will say on the whole a gp is at a lose what to do with CKD , the hospital won't want to see you , there isn't a lot of help if I'm honest , just don't panic , oh I'm 44 yrs young .
Hi Kirstie, thank you for this. I am not panicking, it's a milder kind of worry (anger, maybe?) at the thought that we are basically just told to wait until it gets worse, or 'bad enough'. Presumably, depending on what's causing it, kidney function can be improved, or at least the deterioration stopped, or slowed? So why not look into the cause (if gfr is indeed not stable but declining)? I keep reading (on NHS documents) that CKD is the next great public health challenge, with costs for dialysis/transplant having spiralled upwards in the last couple of decades, that it needs to be caught early etc, yet jobbing clinicians seem to still work with an old model that only really pays attention once it's a life-or-death situation... I realise I'm sounding quite agitated but it's frustration rather than panic. Me too, in my 40s (3 yrs less young though, at 47).
Hi again ,I was at the doc of late , she want me on blood pressure tabs and stations , which I was not happy to take due to my blood pressure is doing fine , but took them anyway , then went back nothing had changed ,still the same , so I said to the doc , I don't mean to be rude but I know my body ,it let's me know what's going on , I said I know you call this the silent disease ,well take it from someone that has it ,its not , she then turned round and said to be honest this is out of my league , I really don't know the best way to treat you ,I think I need to contact your consultant ,then I will get back to you , I think this is the problem , they are at a loss what to do , but I just trust my body and listen ,
Hello BerkshireBird! My understanding is that eGFR readings can be very approximate at the higher end of the spectrum, particularly above 60. The lower they are, the more accurate they tend to be as a reflection of actual kidney function. The function itself can vary of course, in response to the things you describe.
I want to thank everyone who replied to my original post - hearing your stories and replying to them in turn has helped me think things through a little. I've decided not to worry about causes unless the monitoring does indeed show declining gfr over the next few months. Hopefully my GP would offer further investigations anyway, in that case. Thanks again, and best wishes to all.
I am also at stage 3, and was diagnosed in Feb of this year (CKD), I am in South Wales of the UK, and only now received my appointment to see a Nephrologist for the first time. My eGFR ranges from 55 to 48. My GP puts it down to long Term High Blood Pressure, but more tests to come with the neph I believe next month.
My first kidney decrease was found last May 2012 and was monitored from there, it taken 4 blood tests for my GP to diagose me.
Hi, Iam also ckd3 and just been diagnosed but told my gp will monitor until it gets worse. I have been told that the only reason they can find for this is because I have taken prescribed anti-inflamatries over the last 10 years (not continuously) due to osteoarthritis in my hip. My blood pressure is normal and scan shows no infection or problems with kidney. Main problem is need to get up at least 3 times a night and always feeling tired.
I feel the GP is just ticking a box in telling you you have CKD. Like everyone else I was told to just carry on as normal diet wise and that I could carry on taking over the counter meds. I think more effort should be made in finding out what caused it for each individual as there are so many causes. I don't have high blood pressure or diabetes, I don't smoke and I've always had a healthy diet. It was only after reading the threads on this extremely useful forum that I discovered that frequent use of NSAIDs can do it, and that struck a chord with me as I have had surgeries and accidents which required lots of them. All fully endorsed by the GP! Not one word was said about the possibility of this happening. It seems to me to be a silent epidemic....
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