Nephrologist Consultation

[eastham1153]

Hi all,

Can alnyone advise wether or not once you have been diagnosed CKD3 due to over medication of Naproxen do I have a right to ask for a refferal to a Nephrologist? My GP has said he wouldnt refer me until I was stage 4/5.

[bowler]

Hi.

I have been at stage 3 for several years, my GFR is 38. and like you my GP will not refer me until I reach stage 4.

[Calley]

Hello, I am in exactly the same position as you. I was taken off Naproxen after 5 years because it was found to have caused kidney damage. I too am stage 3. My GP told me that "there was no need to worry as long as I ate sensibly, only drank in moderation and avoided all brands of NSAIDs and that when the Naproxen was out of my system the kidney related symptoms I was complaining about would be better" (I did and do feel better, but it took about 3 months).

There is no real point in you seeing a Nephrologist at this stage, he or she will simply say the same thing and I think if you were to pay privately you would feel like you had wasted your money as this is the standard approach. Seeing a Dietician at Stage 3 on the other hand is something I do think the NHS should fund, but in any event, there is a lot of good advice on this forum in that respect.

You don't say why you were taking Naproxen, I have slight scoliosis (a curved spine) and osteoarthritis has set in on the curve. I was very anxious when my Naproxen was stopped but I now have a Tens machine which is brilliant as long as I put it on and keep very still for a few hours, as soon as my normal dull ache which I can largely ignore, becomes sharper and more painful. I was forced to give up my little part time (semi retirement) job though when Naproxen was stopped.

A tens machine does not work for everybody, but you might want to investigate this and perhaps ask your GP about a tens for your type of pain. They range in price on Amazon from about £30 to £200. My tens is a mid range one. I think the cheaper ones work fine but they have very few settings, the more you pay, the more settings you will have, and I have found that there is a big difference so far as effectiveness is concerned, depending on which setting I use. It took me a little while to find the setting that works best for me.

By the way, I was taken off Naproxen about 18 months ago, my GP said that if, and only if, I am in very bad pain, I can take Co-codamol for a couple of days and issued me with a prescription for a large box. With the aid of my tens I only very rarely take Co-codamol now, in fact 3 times in all in the past 18 months.

I hope this helps.

[eastham1153 in reply to Calley]

Hi Cally, my doctor told me my GFR wouldn't drop further but it has done by 34% since I stopped Naproxen and I haven't taken any further medication in the last 24 months whilst it's been dropping that's why I'm so worried. I had a successful spinal fusion and decompression so no need for meds now and I've lost weight and strengthened my back. I just want to find out why it's dropping so rapidly ....I'm only 43 and don't have high blood pressure or diabetes ...thanks for replying x

[vaw777]

Hi.. be happy you are in stage three because with diet you will be able to stay and even improve your stage three rating. go to a kidney dietitian and stick religiously

to the diet she gives you. I was at the lowerend of level three and by sticking to the kidney diet my gfr is steadily rising. I'm really çhuffed with the result.. good luck

vaw777

[eastham1153 in reply to vaw777]

Vaw, I am happy I'm only at stage 3 but do want to do everything in my power to keep it that way! I've tried the kidney diet, cut out alcohol, increased exercise and lost weight and don't take any meds at all but it still continues to fall! Scared I'm getting to stage 4 without doing everything in my power to establish the cause x

[vaw777 in reply to eastham1153]

wonder what diet you were on. my diet is low protein low potassium which means no potatoes tomatoes bananas and only a half a cup of milk a day.very little red meat... I'm a vegetarian anyway.. your health comes first so if you can't drink well at least you are alive. z

find a kidney dietitian and work with him/her.

if you are losing ground you must be having to much potassium.. all the best eastham cheers vaw777

[sukki]

Hi eastham153,

I am at Stage 3a and stable as I have been when diagnosed 2 years ago. My GP would not refer me to a nephrologist and said I would have to pay to see one, so I did. The nephrologists gave me ultrasound and it was found that both my kidneys were scarred. If I had not paid then I wouldn't have known about the damage to my kidneys. On the bright side, I am still stable and have been corresponding with a renal dietician in America called Mathew Ford. I buy her recipe books etc. Also, Davita website is good too. I was told that with a good and careful diet you can stay at Stage 3 for a very long time. Good luck ☺

[eastham1153 in reply to sukki]

That's Sukki for your reply ...do you mind me asking how kidneys get scarred? I'm trying everything to keep it stable and I'm seeing the results of the diet in everything in my blood results except kidney function, so frustrating! Did they give you good advice? When I was first diagnosed I wrote on here and found out about the good internet sites and have taken their advice to the letter. Good luck also x

[sukki in reply to eastham1153]

Hi, they don't know how my kidneys were scarred but believe it happened in childhood or maybe even born with it tho I do not know of any other member of my family having CKD. By the way, the renal dietician in America is Mathea Ford, not Mathew, typo error. She is very helpful and gives good advice. She has kept me stable. You have to be strict with yourself, leach root veg, no chocolate, potatoes, tomatoes, bananas. Watch the levels of potassium, phosphate, protein and salt in your diet. Once you get used to eating this way you will feel so much better x

[didibhai in reply to sukki]

Dear, could u help me to contact with Mathea Ford by email. Thank U.

[sukki in reply to didibhai]

To contact Mathea Ford just Google Mathea Ford Renal Diet and you can then get through to her website. Hope this helps, good luck x

[Poppygayle]

I was just wondering how do you know if your ckd is over use of drugs ie naproxin or any anti inflammatory ? I have ckd 3 but haven't found the cause yet the ultrasound scan showed no damage to the kidney but bloods say different .

[sukki in reply to Poppygayle]

In my case when nephrologist looked at ultrasound he thought it looked normal but when he discussed it with the radiographer they noticed slight scarring on both kidneys and because of this the specialist said I should go on the kidney register. No one has come up with a logical reason for the damage to my kidneys!

[panda22]

My GFR dropped to 29 when I had been on diclofenac for just a month. My doctor was great and got me an emergency appointment with my neph. I had great treatment and saw him until I steadily rose to 40. I was discharged but was told if my functions went below 40 again he wanted to see me again. All in all I had great treatment from doctor and hospital.

[eastham1153 in reply to panda22]

Thanks everyone and Panda22. I have now managed to talk my doctor around after 6 months to refer me, he said it won't be an urgent referral but none the less it's a referral! I'm really pleased about your news and it's positive that it's risen significantly! What type of treatment did you get for this to happen?

[dizzydi]

Hi there, I was referred at stage 3 ckd I am in the UK, I note this post was posted some months back but did you manage to get referred to a Neph after? My GFR on referral was 48eGFR.