KIDNEYS and APS and SLE Lupus Has anyone had a low GFR after it being good for years

[Cherrydi]

I have had lowish GFR results, never 90 like healthy people, but today found my GFR is 53 which is a concern as that is stage 3 according to tables I have read..... Repeat test is being done, has anyone had low GFR when Lupus and APS is at its most active and then improved when it is less active, I think menopause has kicked off my LUPUS and APS really badly, as I have had all sorts of things happen in the past 2 years....

[GinaD]

Cant help you. I don't even know if I hae ever had this test -- if I have the values were normal and so I ignored it, or the results were never discussed, or -- whatever.

I do get, and have reporrted to docs, that if I do not drink a lot of water in a day I get a strong back ache which, since it goes away after a couple of glasses of water, I suspect is caused by my kidneys.

[Foss]

Hi Cherrydi Like you I have SLE, APS and Sjgrons and am post menopausal. My GFR is also 53 and creatinine level 94 at last test, but Drs at St Thomas' just say it is mild impairment. I think it is important to have any urine infections or possible infections checked quickly and if you are very concerned ask for a urine sample to be checked for protein and or blood. I know what you mean though when you look at a chart which puts you at stage 3!!

[Cherrydi in reply to Foss]

Thank you SO much you have helped a lot, do they not treat your kidneys in any way with meds etc, I also have a lot of other health problems, one being a severe bladder prolapse, which makes one prone to repeat infections, I take a natural remedy to try to stay infection free, the chart made me a little worried to be honest. Have you been at 53 GFR for a while? I used to be approx 60ish, Does it make you go to the loo a lot, I pass water so often some days I am scared I will dehydrate (Sorry if this comment is too personal)

[Foss]

No, nothings too personal here, it's best to tell it how it is. I'm tested once a year unless I have a mega infection then the GP tests. The GFR has been steadily dropping over past five years with creatinine rising. I am not on any specific meds for that only Plaquenil and aspirin, but have recently been told I am very deficient in Vit.D which I think kidneys help to produce (or something like that ) so have been put on large dose of D3 for 12 weeks. Yep I am a frequent visitor to the loo but sometimes it is urgent and painful without passing much. To be honest I don't know whether I should be concerned or not, there are lots of little niggles which I just let go of as I'm sure you do. I do have to use Vagifem pessaries (Oestrogen unfortunately ) but life is much too painful otherwise and the thinning skin internally affects the urethra as well so it's a vicious circle.

You make a good point about it being low when SLE and APS active - haven't thought about it before but will in future.

This site is wonderful - it's so good to know others are out there.

[Cherrydi in reply to Foss]

You have made me feel heeps better thank you, Do you get heart flutters too, I get them and a racing pulse, currently being looked into. I feel like I have an infection when I go to the loo, even when I don't but as I have a serious prolapse (needs surgery) but cannot get it done, I put it down to that, I also have ovarian cysts and endometriosis that can cause bladder issues too, so what with the prolapsed bladder, the cysts the endo, and the SLE and APS and Protein S I never know which part or parts are causing which issue, where one starts and the other begins as it were.

[Foss]

Is there any medical reason why you can't have surgery for the prolapse, I had endometriosis and endless trouble but had a hysterectomy when I was 45 and from that point of view never looked back. But I was given large doses of oestrogen and I think that set the SLE off. Kidney and bladder probs seem to go with the territory. It all sounds very nasty for you and a heck of a lot to contend with on top of everything else. I know just what you mean about never knowing where one pain begins and another takes over. Heart flutters and racing pulse ? is this anything to do with the menopause or are they checking out your heart?

Good luck with the tests and keep in touch.

[Cherrydi in reply to Foss]

I have Ovarian Cysts and they won't even do a biopsy, The bladder prolapse is severe, and the endo is awful, I am 8 stone over weight, and have APS Lupus and a second blood clotting illness Protein S, so they won't take the risk, I need a hysterectomy, cyst and ovary removal, and bladder repair, and vaginal repair, They won't do ANY of them, they say the risk is FAR TOO MUCH and I can only have surgery if it is a life threatening situation, then what have you to loose? I have far too many illnesses to have surgery bascially, and the 8 stone over weight makes it all so much worse, I am trying to loose that now !!! But just as I was to start exercise, on an exercise bike, the heart flutters started, I have the 24 hr ECG monitor on now, and what do you know .... My heart is behaving better today, a handful of flutters, nothing like usual, so I bet it won't show a true picture ..... I have over 20 separate illnesses, so it is not easy at all.

[Foss]

Oh you poor thing I really feel for you it sounds awful. It must be horrible with the ECG monitor, I hope that you begin to get some answers. I think you need a hug!

[Cherrydi in reply to Foss]

Thank you so much for your kind words, this is not all the illness I have, but I am not one to complain, I try to be positive, I have now had the 24hr EGC and what would you know I had 10 minor flutters and none of the usual racing pulse, took it back to the hospital, and on the way, as I was a passenger (so no stress with driving etc) I had a massive blip that made me gasp for breath WHY didn't that happen in the 24hrs I thought, Never mind, with the 10 I had if something is wrong they will hopefully find it, I now hope my kidneys aren't failing, I have so many hopes and dreams, of getting fitter and losing weight (to give me the best chances of a longer life) but at every corner for the past two years, I have hit brick walls, I have too many illnesses that give similar symptoms, so the poor doctors never know which one is doing what, and then which one to treat, BLESS THEM ! we are complicated aren't we, us humans, but no matter what, life is life and I would rather have it like this, than not have it at all.

[julieej]

I have a gfr of 26 due to blood clots in my kidneys. Do not mess around with this. It's not worth it!!! You may be clotting in your kidneys. Ask for a kidney biopsy. I waited too late and by the time they did my biopsy the damage was really bad. You need to be on coumadin probably.

[Cherrydi in reply to julieej]

I am sorry to hear about your situation, how do they treat it in your case, are you on Medication and Dialysis, warfarin or coumadine or aspirin, I am already on Warfarin and Aspirin and have an INR range of 3.0 - 4.0 I have been on these meds since 1997, so I hope it isn't clots, I cannot have biopsies or any surgery of any sort sadly.

[Gmagolf in reply to julieej]

I’m sorry your GFR is so low. I have recently been diagnosed with APS. My gfr has been around 50 for many years, now all of a sudden it’s dropping. 48, 46 and now 41. Never thought about possible clots in my kidneys. I am scheduled to go to a nephrologist. We’re there any signs that you were clotting?

[Gmagolf in reply to Gmagolf]

Sorry. I see this post is 6 years old. 😢

[julieej in reply to Gmagolf]

That’s okay. I’ve learned a great deal in the six years since this post. I was misdiagnosed with APS. I actually have atypical hemolytic uremic syndrome which is some ways mimics APS. AHUS is a genetic disease that also causes blood to clot, low platelets, and can have very similar symptoms. It’s caused by a defect in part of the immune system. I had another flare a few years ago and my renal function went down to about 10%. I got a tenth opinion from yet another doctor who FINALLY properly diagnosed me (this disease wasn’t even discovered until 2011 though so it’s still new and very rare). I started some infusions and now back up to 19% and still not on dialysis. Thank God. Ask about the possibility of atypical uremic syndrome. Google it also. Good luck.

[Gmagolf in reply to julieej]

Thank you. I’m so glad you are doing better👍

[julieej]

Dialysis normally starts when your gfr is 15 but I have to take blood pressure medicines, coumadin, aspirin, and lots of iron, plus a renal vitamin that contains vitamin D and a diuretic. My main issues resulting from the kidney problems are high blood pressure, anemia, and swelling. I just make sure to keep my INR up and pray!!!

[Cherrydi in reply to julieej]

I am so sorry to hear you are having to cope with all this, it must be really miserable, I do understand as I have some awful illnesses, so I empathise with you totally. Did you not know that your kidneys were effected until they were GFR 26, and have they stayed at GFR 26 for a while? do they check you monthly etc Have you got Lupus as well as APS? I am thinking of you x

[overnighthearingloss in reply to julieej]

I think mine went lower than that at one point but I resisted dialysis as I am so needle phobic.

Things have reversed somewhat and I am now back at stage 3.

I made quite a few dietary changes at the time. I dont know if that is what was successful for me.

Some people will say.... but I cant give up this or that. My attitude was you have to be in it to win it.

I dont know if it will work for you but I found I was better able to tolerate alkaline foods and incorporated more of them into my diet. I also cut alcohol and severely restricted tea and coffee. I have managed to reintroduce things since my kidney function has improved

Take a look at rense.com/1.mpicons/acidalk...

[julieej]

Had only mild kidney problems before pregnancy--had not been diagnosed at that point. Renal failure became severe about 6 mos after she was born. I even had a transplant that failed. Oddly, slowly over the course of a couple of years though my native kidney function improved to where it is now. I never went on dialysis. My child was born in 2005 so I've been battling it a while. I have only been diagnosed with APLS. They check my kidney function every 3 months or more often if I'm feeling bad or ask them to. I check my INR weekly.

[Cherrydi]

You have clearly been through a lot, but you have done well to not of had dialysis, it is really interesting how your own kidney improved after the transplant, how amazing, I know it must make you feel very poorly, but to improve is amazing, I thought once they start to fail they just get worse, I didn't know they could pick up a little, I hope you continue to battle, and do OK, I have my INR done weekly, and kidney function will now be regular for me. Thank you for sharing your experiences with us. It has certainly helped me a lot. Take Care x

[julieej]

They told me that my kidney function would never improve which is why I proceeded with the transplant. My kidney doctor thinks that stem cells generated while I was pregnant may be responsible for the improvement by repairing tissue damage. The research on stem cell use is amazing. Who knows though...it might also have been the Coumadin. I don't usually feel bad but I certainly have occasional bad days but so does everybody.

[Cherrydi]

That is really interesting about the stem cells they are amazing things aren't they, you are right we all have bad days, do you have to watch what you eat and drink? does any thing make it worse for you?