High potassium level and lupus nephritis

Hi folks , had my routine kidney check today and was told my levels all stable apart from my potassium level which is 5.8 . She asked if i had over indulged on Christmas cake and chocolate over the new year . I have had some but don't think I over indulged , anyway that's what she is putting it down to she said . I said well will you take my bloods today to check again which she has . When I have read about high potassium levels when I got home I have discovered that 5.8 is actually very high , 6 is a dangerous level so I am surprised she just put it down to chocolate and left it at that . I have read what foods contain high potassium , milk and salmon are among them which I am suppose to have because of osteoporosis , no mention of chocolate . Another thing I read was that certain drugs can cause it like ibersartan which I have been on for about 9 months , she didn't mention that . Has anyone else with lupus nephritis had this problem , I read this can cause kidney failure .

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  • Hi Buffy14

    I do not suffer with lupus so,I,cant comment on the condition.

    However I do have chronic kidney disease,rheumatoid disease and am diabetic.

    Around this time last year I had to be taken into hospital,urgently.During november and december of 2015 i suffered two episodes of acute kidney failure.My kidney function went down to 14% and I Was very poorly.

    My kudney episodes were attributed to methotrexate the drug which I was taking to control my RD.All my meds were stopped immediately to,give my kidneys a chance to recover.

    In january I had to visit a dialysis unit as at the time my treatment was still,under review,I had ongoing checks to,make sure my kidney function was improving when it was found my potassium level was 6.4.Wow that,sent some alarm bells rinung so back to,hosputal for another spell of a few days.

    I was put on sodium bicarbonate tablets which seemed to lower the potassium to a level of 5.2 within a few days.

    I was given a sheet of potassium rich foods to avoid and was quite surprised at some of the foods on there that I Had always considered healthy,foods. Eg,oranges,apples,grapes,nuts,potatoes esp,jacket potatoes,chips.crisps or any potato snack,and of course chocolate.

    I try to avoid these foods but I Like a lot,of these foods so I tend to use them in moderation.My potassium levels are now back to normal and have not had a problem since.But I think my problem stemmed from my kidneys so I also try to ensure I remain well hydrated.

    As there doesnt appear to be any drug they have issued to,you to control the potassium level its obviously not a concern at this time.Maybe some of the drugs you already take could be having an effect on your readings- I dont know.

    You can obtain a current list of potassium high foods from your GP,and certainly any concerns speak to them and they can allay or clarify any worries you may have.

    Take care

    Crusee

    XX

    ,

  • Thanks for your reply that's very helpful , I was surprised what foods are to be avoided also and that ibersartan can cause this and she didn't mention it . I was put on ibersartan about 9 months ago and it has brought my high blood pressure down to normal levels and reduced my protein leak to just a trace and also my gfr has gone up from 47 to 53 . The other drugs I am on I have been on for years , I am on Mycophenolate not methotrexate . She took another blood test today to see if it was any different . My lupus is flaring at the moment my dsdna has gone up to 83 , I don't know if this could cause such problems they suggested referring me to a different kidney specialist who has specific knowledge of lupus and runs a lupus clinic so will see what he says when I get an appointment .

  • A Renal/Lupus specialist is the way to go !

    I'm just back from a first appointment with one. She was really open, informative and put my mind to rest on so many things I'd been festering about - for years - explained why this happened and then that etc.

    Its the first time I've felt like I have a proper grasp and a near full understanding on whats been happening with all my giblets. My minds not spinning out so much over all the uncertainties.

  • That's good news , how long have you had lupus nephritis ? I have had it 15 years now and don't really know much about it , I have found out more from this community than anywhere else . Yesterday's bloods showed the potassium had come down to 5.3 but so has my eGFR that was 53 last week yesterday 42 . Do you take blood pressure medication .

  • Oh god yes. And I hate the stuff. I'm on Canderartan (similar class of drug). Not because my blood pressures particularly high. Its been prescribed 'just' to reduce some rather nasty proteinuria. And yes....on the drug info leaflet it actually says in large print that it can cause kidney damage too. Not something you want to read.

    I've had two senior nephrologists insist I take the stuff / and other versions of it (Ibersartin included) without blinking - so I've kind of held my breath and bowed to their greater knowledge.

    I've had lupus nephritis since a nasty flare at the age of 15. Was told I was one month off renal failure - but with massive prolonged meds, I recovered well with a good eGFR. Now 48 and just recovering from another big flare two years ago. This time The eGFR was around 50 - now its recovered to about 70.

    I have class 3 and 5 lupus nephritis - and unfortunately the class 5 (membranous damage) is the main worry for me. Lots of old fragile capillaries just waiting to crumble. This is whats causing a (30 times higher than it should be) proteinuria and I've been told - given that this is happening - I'll most likely loose the kidneys over oncoming many years.

    Bit of a bugger - as I zombied myself out for two whole years on high dose nasty medications in hope of stabilizing them. But my recent aforementioned Doctor was pretty strait with me and said in order to prolong my kidney life I need to take the bloody candasartan and probably up my immuno - suppression to as much as I can tolerate (without completely losing my immune system) so's to prevent even the slightest flare.

    This seems to be the very adamant and standard approach for me with my last - & even more so with my current Lupus/nephrologist specialist. For me it's - Myfortic (easier on the gut type of mycophenolate) and Pred.

    (My problem is I've suddenly become horribly drug sensitive - possibly (?) due to spleen problems now !?!!!?!!!) - so I'm in a pickle. Taking all meds at night and sleeping through the main horrors. Awaiting advice on this.

    I'm by no means an expert - but I think you're justified to be concerned about the potassium spike and now the eGFR drop from 53 to 42. (and creatinine). Your Doctors should be on to this right now.

    But I wouldn't be blaming the BP meds. (those drug info leaflets have to mention if one in one million people get a peculiar reaction) Its more likely the nature of the Lupus Nephritis. My numbers go up and down like a disconcerting yo yo - but If you're flaring a bit, this is probably the most obvious reason.

    If your current Doctors have suggested a new Lupus/nephrologist it might mean that Lupus might be a bit out of your current specialists league? It would be worth getting to that new specialist yesterday.

    If you have to wait to see a specialist -

    Ask your GP if you can increase the dose of (I'll just assume you're on) prednisolone 'right now' to settle the flare ASAP. Perhaps up the mico as well. (I believe ?- prednisolone is more directly for flares, mico for stabilization ???) Check with your GP that you're lymphocytes and white blood cells are up to the task.

    Sorry - I'm not a Doctor - but this is what my subjective experience would tell me to do.

    Please feel free to contact me whenever you want.

    I'm from Australia so my response time might be a little slow.

    xox

  • Yes I think we have spoken before , I do take the myfortic form of Mycophenolate and 5mg pred , I take more pred when I need to usually without asking doctor , been doing that for years but I have decided not to do it and see what happens , my dsdna has gone up to 83 , think that may be why they want to send me to a lupus nephrologist . The ibersartan I think is the problem . I am able to see my results online on what's called patient view , it is on there it says all drugs ending in pril or artan can increase potassium levels and my chart shows my level has been increasing since being on it . A friend of mines husband had a rare cancer which involved his kidneys , those drugs made his kidneys worse , it's common , Marie said they can damage other organs to . It's great isn't it we have to either have high blood pressure with the risks from that or risks from the drugs to control it , same with everything else , steroids and osteoporosis which i have , warfarin I take which can kill you and of course the horrible immunosuppressant drugs killing off our immune systems , sometimes I feel like stopping all these things and taking my chances without them . I don't really understand all the kidney stuff , your kidneys are unfortunately in a bad way so how do you get an eGFR of 70 ? I am going to ask this new doc when I see him a lot of questions , I have never for example been told what I can or can't eat , not been referred to a dietician . Are you on a Renal diet ? It's so frustrating isn't it , even the medication makes us sick . Have you ever had cyclophosphamide to try to put you into remission ? I am not sure if remission is possible if you have irreparable damage to kidneys .

  • I was given a massive dose of cyclophosphomide and 60mg of pred when I was 15. It did the trick. And I was in massive trouble. Today they seem to insist on the mico as being better ?

    I think remission is possible with kidney damage even with the eGFR being at 50ish. You only need 50%. It just depends what kind of damage you have. Yours might be sections of physical damage here and there without anything more complicated on a general cellular level in the rest of your kidneys. Something to ask your specialist. To achieve remission - you just have to be pedantic regarding - no more flares.

    Yep. I can absolutely relate. The damned if you do, damned if you don't with the medications. Every choice I've had to make lately is pretty much - choose your suffering. Which is the less of two un acceptable life altering or life threatening situations. Pretty sure its going to be the same with my whopper spleen.

    I'm pretty burnt out at the moment and when I get like this I tend to give myself a small holiday from some of the drugs and purposely think about other stuff for a while.

    I definately know what you mean about just stopping all the drugs and taking the chance. I've got a lot of neuro and digestive issues - plus the spleen pressing down on my abdominal organs (probably resolvable but at a cost)- again - another unacceptable choice coming my way.

    Sometimes I wonder whether its time to consider the fight becoming a bit ridiculous. I'm waiting to see if my new specialist can help me with some quality of life issues - Sometimes I seriously consider stopping the meds, but unfortunately then I vividly consider the consequences. I feel kind of trapped with no place to go.

    The candisartan gives me grinding depression, so occasionally I go back on Amlodopine - which is just a pure vaso - dialator for BP control. Its doesn't have protien sparing properties, but its better for stable control BP.

    I had one Nephrologist briefly suggest that if I can keep the BP at 125/75 on the Amlodopine (because I'm not loosing blood from the kidneys) then that would be OK. This was before the protein numbers shot up.

    Yes.....I don't completely understand whats going on at the moment with my Kidneys. I kind of see them as a fragile network of capillaries that are only just holding it together and still giving me a good eGFR. I think the sheer fact that I'm leaking too much protien will gradually cause a kind of erosion of the fragile structures I've got left. This is the impression I'm left with anyway. It will be gradual. Not looking forward to it.

    After my last renal flare I went from eGFR 50 to 70 due to horrible great massive doses of Pred and micophenolate for a year and a half. Nasty ride.

    Ah yes......the diet thing...... I've actually come to the conclusion that nobody really knows. My memory's a bit dodgy at the moment but I believe I read a Medscape article that said the schools still out on weather a special diet is beneficial. My GP tells me to eat lots of protein because I'm loosing so much. I went to a dietitian and she handed me a list of kidney health vitamins. I haven't progressed further than this.

    I've had a look at some - early chronic kidney disease sites - one here at healthunlocked. - NKF for Early CKD (and a GP said the same thing). Don't eat more red meat than you can fit in your palm per day. Thats about the only concrete thing that's stuck with me. The site has lots of diet suggestions.

    Anyway -

    I'll still be annoying and say I still think you should increase your pred. While acknowledging the real Ibersartan/potassium issue - there is the rude fact that your creatinine and eGRF is getting worse and 'YOU ARE FLARING' - perhaps as a double whammy reaction to the potassium/Ibersartan ? I'd take the better safe than sorry approach and stop the flare while you're waiting to see your specialist. You cant risk any more damage. I lost close to half my kidney function in the space of two months from my last flare. You can't mess about.

    I understand your strong views regarding whats happening to your kidneys. My argument would be 'It wouldn't hurt' to up the pred until you see your specialist. It may save you a lot of future grief.

    Get to that specialist. ASAP.

    As stupid as some of them are - they do have a broader knowledge and wider picture of our entire system that you won't get from anybody else.

  • Thank-you for that I will up my steroids I usually take 30 for 3 days when I think I am flaring horrible pain in wrists usually 1st sign for me . I am level 3 but not had a biopsy since diagnosis 15 years ago . They mentioned doing another about 3 years ago but were worried about the risks as I am on warfarin I think my results had been bad , when I went back for my next check things were back to normal ( my normal ) and biopsy wasn't mentioned again . Recently a doctor asked when I had last had one , I suspect a biopsy might happen again soon . I have been stable for years on myfortic and low dose pred eGFR around 47 , 48 . Always had a lot of protein leak until I was put on ibersartan a few months ago so it will be a pain if it is that that's raising my potassium level . Thanks for your advice , take care I hope they find a better treatment plan for you soon there are new things out there now x

  • : )

    Really hoping the kidney issues stabilize for you and your new specialist is a good one. Also hoping its just a matter of settling things down again - and things bouncing back so you wont have to have biopsies and deal with too much.

    I had one small kidney blip in my late twenties - just upped the pred and azathiaprine (back then) for a bit. I barely noticed. (no internet and a very elusive Rheumatologist who wouldn't answer questions) So I was blissfully unaware. Hoping you have a similar outcome with this patch.

    My candasartan is chipping away at the edges of my protien problem - but I do take on board what you said about this class of drug. I'll ask my Specialist about it. Perhaps there are alternatives somewhere ?

    I've been told that reducing anxiety and stress is important for Kidneys - so possibly my old school Rheumy knew what he was doing.

    So be mellow.

    You take care too.

    xox

  • I think you should definitely ask for more tests and info....

    Good luck

  • Thank-you

  • Hi Buffy,

    Kidney failure and a few other things can cause high potassium not the other way round. The immediate danger with high levels of potassium is cardiac arrhythmias which is why drugs are given to immediately reduce any dangerously high levels.

    The problem with the potassium part of the U&E's blood test is that if the sample hangs around for a while or clots in any way you can get a falsely high reading. It's the trend that's important, if your eGFR and creatinine are stable it would be unusual to get a high potassium reading without a change in those as well.

    I would ask for the results of today's blood tests and take things from there. Hopefully it's just a blip.

  • Thank-you , I am on warfarin for blood clotting maybe they didn't take that into account when checking my blood , I should get bloods back tomorrow only took one day last time will let you know .

  • Yesterday's bloods were , urea 10.8 ( 11.5 on the 4th) , creatinine 116 (94 on the 4th ) , eGFR 42 ( 53 on the 4th ) , potassium 5.3 ( 5.8 on the 4th ) sodium 139 ( 138 on the 4th ) . So potassium has gone down but so has eGFR which isn't good and creatinine has gone up . I got the results online not spoken to anyone about it .

  • Just seen yesterday's blood results online , potassium now 5.3 so gone down but so has my egfr it was 53 on the 4th , yesterday it was 42 and other things which were just about in normal range last time were out of range this time like my creatine , I am surprised they haven't rung me .

  • Don't wait - you ring them !

    Perhaps if you know the number of your new specialist - ring him directly - tell, fax or email your pathology numbers along with the most comprehensive medical record you can come up with.

    Sound's like you have to be your own GP at the moment.

  • Yes, more likely to be drugs than chocolate unless you eat masses!

  • I don't eat masses and it's annoying she just made that assumption and put it down to that with no mention that ibersartan could cause it . As my eGFR has gone down from 53 to 42 in a week I think she should be thinking about other causes and not assuming it's Christmas eating .

  • I am sure you are right, but the body is very complicated and they seem to be so limited in what they can do from my experience. I asked to be referred to a dietician some years ago and was referred to gastroenterologist instead who felt I was too ill for a sigmoidoscopy which was the only option on offer.

    I saw a nutritionist privately and one who could test me - it was a good job I didn't opt for the sigmoidoscopy as I am sure it would have killed me. I stick to dietary management now, but not easy.

  • What is a sigmoidoscopy ?

  • It is used to tell if you have cancer of the sigmoid, inflammatory bowel disease (IBD), etc. although NICE now recommends a diagnostic stool test, I read, to distinguish between IBS and IBD. Much more sensible.

    I had one carried out in 2003 privately because the health service didn't do them and it showed dysbiosis, IBD and a neoplastic risk.

    The doctor at the hospital said she did not understand the result, but it was plain to see and it was just that they don't work that way.

    All the tests on offer in the health service, from my experience are invasive, often traumatic to the body and even toxic when the body is already struggling to heal itself.

  • Sensible to repeat the test and have blood taken fasting if still abnormal. If kidney function is normal or near normal and you feel well it is not likely to be dangerous, Addisons Disease (depressed adrenal function) is a rare cause and needs attention but most values are most often false positive results from short variations out of the laboratory reference range or mild increases can be related to medication as mentiioned.

  • Thank-you mark , my eGFR had dropped from 53 to 42 in the 2nd test , a week between the 2 blood test and the creatinine had gone up from 94 to 116 , my lupus is flaring aswell my dsdna had gone up to 83 . I will ring the unit on Monday , my checks are done at a Renal dyalisis unit near my home , they are referring me back to hope hospital in Salford to be monitored by a Renal consultant who specialises in lupus , I originally was seen at the hospital in Salford but asked if my checks could be done nearer home but now back to horrendous traffic and 20minute wait to get on the car park at Salford , ah well probably for the best .

  • In this situation with a deteriorating kidney function high potassium must be taken seriously as it has been linked with a change in kidney function in the wrong direction. If possible get another check on kidney function and potassium today or as soon as possible on Monday, together with an examination of urine for protein and deposit so that these are available if there is not a rapid response from the Hope hospital and are available to help them decide on urgency. The rate of change is more important than the value. Restrict high potassium foods and drinks while awaiting a kidney specialist input (which the dialysis unit or Your GP could probably expedite), especially if change is in the wrong direction}. If the potassium in your most recent blood test has gone close to 6 mmol/l an urgent opinion is proably needed. it would be sensible to get advice before Monday as there are treatments available to lower potassium and also if due to more activity in your kidney lupus a change in management is needed including possible modification of blood pressure lowering medication (some of which also lower urine protein and benefit the kidney but can put up potasssium).

  • Hi thanks I will ring them Monday , my potassium had gone down to 5.3 at the second test it was the eGFR and creatinine that had gone worse . I was put on Ibersartan a few months back it has helped with blood pressure I had a couple of 120/85 readings , last week it was 135/85 and the ibersartan has reduced my protein leak to just a trace in my urine so it will be a pain if it is that that's raising potassium. I will let you know what they say

  • Good. sounds as if situation can wait until next week but you do need some renal expertise soon kidny function deterioration could turn out to be a fluctuation in laboratory testing but if a true deterioration needs expert input.

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    Hi Buffy;

    I am just the opposite, my potassium is always low. About every 2 months the doctor will call in a prescription for potassium for me to take, about a 3 day supply. These tablets are huge! Have to take two a day for 3 days.

    As usual we who have Lupus are all different, but, yet the same. It doesn't make sence, but, then neither does lupus!

    I know this didn't help any, just letting you know you are not alone.

    Wishing you the best!

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  • Thank-you , all the best to you to , yes it's all very confusing for us and everyone with lupus and any autoimmune diseases . Hopefully one day a very clever scientist will discover a way of stopping our immune systems attacking our bodies and find a cure x

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