EGFR: HI Last March my egfr was 50, it's... - Early CKD Support

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EGFR

Ginbobs profile image
19 Replies

HI

Last March my egfr was 50, it's now 38, my GP says he's worried. Has anyone else had a drop like this. I have restless legs, am tired, get breathless, itch fave and arms,also either side of tummy.

Would be interested to know if anyone else has similar.

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Ginbobs profile image
Ginbobs
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19 Replies
bowler profile image
bowler

It's nice to know that you have a concerned DR,  There are a few on this site with stage 3 CKD    [ mine has been at stage 3b  for several years at around 38 GFR ]  but the Dr's don't seem concerned,  I was told I wouldn't be referred to a Nephrologist until I reached stage 4,   I  think you will find that some of your symptoms come with  the CKD ,  especially the itching and lethargy.   However the eGFR can fluctuate,   Is your Dr going to refer you or monitor your eGFR  

Ginbobs profile image
Ginbobs in reply to bowler

Hi Bowler, I am on x 3 meds for BP, he has withdrawn Ramipril for 6 weeks, have another blood test and if no improvement, he said he would refer. 

bowler profile image
bowler in reply to Ginbobs

Hello Ginbobs   Sounds like you have a decent Dr.

I am on Ramipril  and Bisoprolole  [ after many tries with other blood pressure meds. ]  One blood pressure tablet I was taking [ the name escapes me ]  took my eGFR down to 22,  So maybe Ramipril is doing the same for you,   It's amazing how we react differently to tablets, it's a case of trial and error.

Good luck

Ginbobs profile image
Ginbobs in reply to bowler

Same to you, I'm also on Bisoprolol for tachycardia, something else I understand the kidneys can give you. It's been quite an education.

Kind Regards 

Celtic profile image
Celtic

Ginbobs, I so agree with bowler about some BP medication having the potential to cause further loss of kidney function.  I had a kidney removed when I was a young teen and the remaining kidney served me well for very many years until about 10 years ago when it started to deteriorate either due to Ibuprofen or an undiagnosed inflammatory autoimmune condition.  I am under a renal consultant who is trying to treat my high blood pressure - I am now on my 6th pill, having been unable to cope with the side effects of most of them!  In my case, two BP pills in particular caused sudden dramatic reduction in function, namely Indapamide and Bisoprol.  The Bisoprolol caused a loss of 9 points in just over a month, taking me from eGFR 45 to 36 so it was stopped and replaced with Doxazosin and my function immediately regained 5 of the 9 points lost and seems to have stabilised at 41 for the last couple of months on Doxazosin.  I have been tried on Ramipril twice in the belief that it is best for my sole, reduced kidney function.  The first time, I became very ill with severe head pain leading to a long-term autoimmune illness.  It may have just been coincidence the first time it happened but years later when I was persuaded to try it again, the head pain started and the pill was again stopped.  I believe with Ramipril you have to make sure that there is no narrowing of arteries leading to the kidney, and the only way to find this out is by either ultrasound or scan.  If I were you, I would be asking for referral to a renal consultant sooner rather than later, in case the Bisoprolol is adversely affecting your kidney function too.     

Ginbobs profile image
Ginbobs in reply to Celtic

Hi, thank you so much for your advice. Scarily I am on Indapamide, Amlodipine, Bisoprolol and was on Ramipril, also take Quinine for cramps. I guess it's a detective game to get the right cocktail, I hope to get it right, but yes, I will ask for referral if things do not improve. 

Kind Regards, 

Celtic profile image
Celtic in reply to Ginbobs

Ginbob, I so agree it is scary having to take so many BP pills and even scarier when we have reduced kidney function, even though we know it is vital to get (or to try and get!) our BP under control to stop it from attacking our kidneys. They were hoping to add a third pill to my cocktail but I am proving so very sensitive (an "awkward" patient, as my renal consultant has called me!) that so far I'm only able to manage on low doses of Losartan Potassium and Doxazosin. Losartan has been the best of the bunch for me as far as side effects are concerned but on its own doesn't do anything for my BP.  I realise we can all be different in the way we present with our health problems and the way we respond to our treatment but if I were you I would definitely check out both the Indapamide and the Bisoprolol.  Also quinine is definitely not recommended.  I will post a reliable link shortly.  Always check with a good pharmacist before taking any preparations whether  on prescription or over the counter to see if they are compatible with each other and safe for your kidney - pharmacists know more about drugs than GPs.  

Ginbobs profile image
Ginbobs in reply to Celtic

You have been very helpful, it made me take my BP and surprise surprise it's 150/98.  Another 4 weeks or so before blood test, interesting. Yes, I would be very interested in the link, I know about Ibuprofen, and I'm sure there are s lot more that can do more harm than good. Yes, pharmacists are better than GPs when it comes to interactions, I will keep you posted. 

Celtic profile image
Celtic in reply to Ginbobs

Here is the link I promised:

nlm.nih.gov/medlineplus/dru...

I've never taken quinine but in desperation with the leg cramps I did take a small can of tonic water once - felt most peculiar afterwards!  My Dr told me to do arm press-ups against the wall before getting into bed to help with the leg night cramps.  Feet remaining flat on the floor so that it stretches the backs of the legs.  It does help me, and hopefully it might help you. 

Ginbobs profile image
Ginbobs

Thank you, most helpful. 

cmcginily profile image
cmcginily

Hi Ginbobs

re the quinine - defo not good for kidneys. The occasional can of tonic water may be better or the leg stretches are a great idea. Ibuprofen is a deadly enemy to the kidney causing steady decline in function. I was started on low dose Lyrica for neuropathic pain and the side effect was it stopped my cramps and restless legs. Some side effects are good!

best wishes Christine 

Ginbobs profile image
Ginbobs in reply to cmcginily

Hi, thank you Christine. 

netie54 profile image
netie54 in reply to cmcginily

I agree about the Ibuprofen.  I used to taken them regularly. In Spain, where I spend a lot of time , you can buy 600g over the counter.  im thinking thy have played a major part in my GRF dropping.  Ive thrown them all away

now so nobody else in the family uses them.  they are a no no!

Beanbag5 profile image
Beanbag5

Ive been reading here that bisoprolol has decreased some peoples functions but I was the opposite. When taken off my bisoprolol I went from GFR 28 to 24 and my protein shot through the roof. Also on amplodopine and ramipril. It literally is also about the right combination but now I have to live with low BP just to stay on the bisoprolol 

bellefrank profile image
bellefrank

Hi Ginbobs. My husband went from 56 to 27 in a few months so down to Grade 4 which apparently is the normal time to see a nephrologist.. Bisuprol did not agree with him so changed to diltiazem a small dose once a day of 90mg and is fine. His GFR seems stable in the 30s and the nephrologist is not worried about that. He also had restless legs and gout it seemed to me unrelenting in either his toe, ankle, foot or knee. Allopurinol 300mg daily prescribed by the nephrologist has sorted him out.  Thankfully all those symptoms seem to have gone, a tube of oilatum for any itching now and again that's all.  His diet as agreed by the neph. is....all things in moderation... in other words a healthy balanced diet, BP,  and weight fine. Back from holiday where he danced with me every one of our 21 nights.. so keeping active helps. Stress is damaging to us all whether we have CKD or not...Best wishes.  Love Belle x

Ginbobs profile image
Ginbobs in reply to bellefrank

Hi Bellefrank, a dancing husband sounds wonderful.  The symptoms are various and on the whole not too debilitating but I am worried how worse it's going to get. The support I have had on this community has been excellent, it has really helped. Thank you. 

bellefrank profile image
bellefrank

Hi Ginbobs... Everyone is different regarding symptoms but our nephrologist deals with them as they come along. At present my husband has virtually no symptoms so will be interested to find out to-morrow from the nephrologist what his GFR rate is. I will certainly let you know.  He does taker a variety of drugs....allopurinol prevents gout, sodium bi-carb. keeps system alkaline, chewable calcium tablets as his calcium level was a bit low. As he has a pacemaker a further 2 drugs... apixaban to keep his blood thin and finally diltiazem  to keep atrial fibrillation in check re- his heart problem. The latter 2 drugs are both very small dose.... At present all seems to be working well....and we are looking forward to meeting up with some of our American family and friends in Spain for the month of May....Please try not to worry about the future... I was so worried last year, and here we are almost another lease of life. Believe me...I so understand how it can affect your life as indeed it did mine.. Now I think what a waste of energy it all was....you can and I am hopeful you will feel better in the not too distant future and life can be good again. Best wishes . Love Belle x

bellefrank profile image
bellefrank

Hi Happy Jo....I suppose for us it was a bit of luck and an excellent GP. My husband had a blood test following a pacemaker and his GRF was 56. Our GP decided because he was on a small dose of apixaban a blood thinner to take another blood test a month later. Sadly his GFR was then I think 52, then 48 a month later.  He then speeded up the blood tests to every 2 weeks and it just dropped and dropped until it was 27 actually 8 months later. I have to say during those 8 months he had infection after infection, dreadful gout could be in his toe, foot, ankle and knee and was generally very unwell. At GFR 27 he was referred to a nephrologist who decided all his infections, gout, an abcessed elbow had created this sudden drop. So the treatment began sodium bi-carb to keep his system alkaline and allopurinol to prevent gout. I feel if you are well it is unlikely your level will drop rapidly if at all as thinking back my husband was an uncomplaining but very sick man.....Try not to worry you can always ask for another blood test if it helps to keep you stress free. Best wishes. Love Belle x

LaurieRose profile image
LaurieRose

Yes my EGFR is 4 and a have a kidney stone. Snitch mostly at night. Have pain all the timecworse on mo cement and on walking severe for 3 hours a d ubable to move.

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