Would like Kidney advice please?

Hi everyone,

I'd like some advice please in preparation for my next Gp visit.

I have APS, MS, Pernicious Anaemia and a few other related things. I also have Lupus 'Like' syndrome.

I think I have SLE, but my blood tests so far have not shown it. I am on 400mg Hydroxychloroquine for photosensitivity and joint pain. I had started to develop the butterfly rash when I was put on Hydroxychloroquine. Now it's more like brown pigmentation, although the sun makes it prickle still.

A couple of months ago I thought I had a UTI, my Gp tested and said no blood but some protein, so she put me on antibiotics. Then a little while later I had a lot of blood in my urine. It happened on two occasions, and I had a cystoscopy and ultrasound of my kidneys. One kidney was a little larger than the other but otherwise nothing to be seen. The radiographer said he couldn't tell me how my kidneys were working, but that there were no tumours etc. The cystoscopy was clear.

Over the last week or so I've noticed a strong smell to my urine, and a foamy appearance. I'm not dehydrated and the colour is fine. I have an achy, tenderness in my low back on the right side.

Does this sound like a kidney issue? Does it sound like a Lupus related kidney issue?

My feet and lower legs feel like balloons - I suppose it could be the heat, but I don't think they've been like this in heat before.

I am going to speak to my Gp tomorrow, but any advice in the meantime would be appreciated.

It was about four years ago I saw Professor D'Cruz, and he said it was Lupus Like syndrome that I have.

Many thanks for any advice. x

Last edited by

12 Replies

oldestnewest
  • Hi anniesensi,

    We're not medically trained here, so we cannot advise you whether this could be lupus-related kidney involvement, but it is definitely worth speaking to your GP and having urine and blood tests to look at any potential issues. They can then refer you on to nephrology if necessary for further investigations.

    We have a booklet about lupus and the kidneys which may be of interest to you. You can view and download it from our website at lupusuk.org.uk/wp-content/u...

  • i had acute renal failure and flank pain with foamy urine last year. i would go to an urgent care TODAY if it were me. foamy urine can mean protein in your urine, the protein gives the bubbles more structure instead of breaking down right away....

  • Thank you for your advice.

    I went to the dr yesterday who found this time I have got quite a severe infection so I'm on antibiotics, and have renal function tests booked for beginning of September. Apparently they were last done in March and everything was fine then, so hopefully it is just a uti that missed all the lab tests before.

  • Hi anniesensi,

    I have SLE Lupus Nephritis.

    Had my first renal flare at the age of 15. Had another one two years ago. I'm now 48.

    I've still got two pretty good functional kidneys. Lots of good medications to keep these kind of things under control.

    How did your appointment go ?

    I'm hoping he did a full run of Renal Tests - Blood and urine etc. (Albumin/Creatinine etc. etc. ) Also very much hoping you now have a referral to a Nephrologist just as a precaution.

    I'm happy to chat about my experiences with this condition if you like.

    xox

  • Thank you freckle,

    I do apparently have a nasty uti this time, with protein again but that's normal with infection I believe?

    I'm having blood tests again but not until September. Apparently they were last done in March and everything was fine then. If my usual GP was not on holiday I know she would have taken blood there and then.

    Thank you for taking time to reply.

  • Hi anniesensi,

    I can only speak from subjective experience. The symptoms you described do indicate a protein leak, but with oedema (legs like balloons), the achy pain, foamy urine and one slightly enlarged kidney I think - just as a preventative medicine strategy, 'please' get yourself to a Nephrologist ASAP.

    I really apologize for being a bit gothic but from my experience GPs are not very savvy when it comes to Kidney health. (I have Lupus Nephritis on my medical record and my last GP's didn't recognize the warning signs of a renal flare)

    I'll be honest, I thought your GP would respond a hell of a lot better to this. I'm now going along with the tone of CAH83. Don't muck about. If you have to, present yourself to an ER of a large hospital - report Proff. D'Cruz' opinion and get yourself to a nephrology department.

    I say this because from an SLE Lupus perspective - if you have a Lupus like syndrome, ie. your immune cells like attacking things they're not meant to - a Urinary tract infection that causes high enough levels of protenuria to cause oedema would have to rate as a fairly full on nasty, damaging infection. - And infections that effect the kidneys literally attract Lupus autoimmune cells to the kidneys and all this can happen so quickly you wont even realize it happening.

    This is one of the main causes of Lupus Nephritis. It can happen so fast without any obvious symptoms.

    I'm sorry to sound alarmist. You actually don't have anything to worry about as long as you cover all the bases.

    This might end up being a huge waste of time, but given what you've described - it wouldn't hurt to quickly get to a nephrologist just to make sure.

    Lupus Nephritis is totally controllable with modern drugs and the healing capacity of young kidneys is brilliant, but it has to be caught early to save a lot of grief.

    Apologies for the slightly freaky response but I think I would like to drown the GP you saw in a shallow puddle.

    X

  • Hi Freckle. You don't sound alarmist to me :) I have lupus nephritis too and all the signs were there but every GP took it for infections for yeears (urine with foam, leuokocytes, microscopic blood, darker color sometimes and puffy ankles).. and the first drug I got for lupus just made it worst (methrotexate).

    Anniesensi I wish you the best with your current treatment! hope you feel better soon.

  • Thanks Freckle,

    You don't sound alarmist. To be honest I feel like I want to be more thoroughly investigated, and I am not happy with a diagnosis of Lupus 'Like' syndrome. I don't know what that even means, considering I am being treated with Hydroxy and have been on 400mg for about four years now.

    When I saw my Gp (actually, she was on holiday and it was a cover Gp) I was given more antibiotics, and everything did seem to clear up. I'm having more blood tests for kidney function on Thursday. I'm afraid I've just taken the antibiotics and hoped for that to be the end of it, however I think the infection may be coming back now that I've finished the course. I've had so many diagnoses, I think that's why I haven't chased this one.

    Maybe I should ask to see Prof D'Cruz again? Or Should I ask to see a Nephrologist? Who will be most knowledgeable? Four years ago Prof. D'Cruz said I do not have Lupus, so I think everything has been based on that.

    I know this sounds ridiculous, but I get so worn out talking about my health to doctors, and I'm terrified now of having something else wrong. I am a very auto immune person, as many of us sadly are. I'm actually afraid to push and have them find something that they haven't found in the normal blood tests. Also, having just found out our 2 yr old boxer has bone cancer and doesn't have very long left I don't know how much energy I can put into this. I will pick myself back up again. But if my Gp says she doesn't think I need a referral what do I say?

    Because I have MS I have a history of UTI's I have been on long term low dose antibiotics to prevent infection. I hope this would have helped things rather than masked things.

    Thanks for the advice.

    x

  • Hi Annie,

    I'm sorry to hear about your old boxer. Sounds like an absolutely rotten time for you right now.

    I'm writing from Australia - and I get the impression the English medical system works a bit differently - But speaking from here, I'd try and get referrals to both a Lupus Specialist and Nephrologist, But I would definitely prioritize the Nephrologist (speaking from here - most of them have a reasonable grounding in lupus) A Nephrologist with perhaps a generalist specialist addition to his degree profile might be beneficial. The more degrees the better.

    I'm thinking (Please note: without having any great medical knowledge at all) that if you do have Lupus or something similar it might not be a case of having something else wrong, but perhaps ? the same thing wrong but with just a different label and different treatments ?

    I think if you do have kidney involvement, a Nephrologist would do a biopsy (not nearly as bad as it sounds) which in an SLE patient would give a clear diagnosis of Lupus. The SLE cells and typical Lupus renal damage patterns are diagnosable under the microscope.

    I've heard of MS as being described as Lupus of the brain and that we share some similar dysfunctional DNA (I think?) so if your'e unsure and there's a possibility of Lupus, its important that you get to the bottom of it all so you can get properly directed medical treatment.

    (again....I believe?) The most common pattern in SLE Lupus is renal and brain involvement. (although those facts aren't mentioned much on this forum)

    There's unfortunately also such a thing as sero negative Lupus - I think it effects roughly about 5% (or less) of Lupus patients - so not too common. It means that the Lupus isn't always obviously detectable via blood tests.

    Believe me I understand your fatigue dealing with freaky uncertain medical problems - I know its exhausting, disconcerting and if you're anything like me, you just want to forget about it and get a life. But unfortunately if a senior Lupus specialist once said you are 'Lupus Like' ( I don't know what that means either !) ? - it might hint at diagnostic uncertainty at that time ? then its definitely worth another look. The illness flares and wanes.

    If you have to prioritize specialists, definitely go for the Nephrologist, 'especially' if you still have those full on symptoms.

    As to convincing your GP to give you the referrals. (Here we can randomly GP hop - that's what I do when I hit an obstinate GP) I'm not exactly the most assertive person in front of a Doctor myself. All you can do is explain your concerns and ask would it hurt anybody for you to see a Nephrologist - and if not - why not ? Asking polite questions can be quite assertive/aggressive.

    I've had SLE for more than 38 years and its only recently that I've learnt that dealing with your doctors isn't about being friendly or nice or constantly sparing the Doctors egos. GPs are generally not well enough equipped to manage complex illness like MS or SLE without very regular guidance from specialists - and sometimes you have to shirt front the specialists too. (Something I'm doing right now) Long story........ But here we have the freedom to jump specialists too if things get a bit hairy.

    As to how to navigate your medical system and be assertive with GPs - I know this is a favorite topic of a lot of people on this forum - if you re-posted on this issue alone I recon' you'd get a good response.

    Again, apologies if I've lead you up a grinding & uncertain garden path. My advice is extremely Lupus-centered.

    Feel free to stay in touch. Again I hope I haven't discombobulated you.

    xox

  • Hi Freckle,

    I think I missed this post originally…

    It's the same here, you can Gp hop, but honestly my Gp is really good. She is guided all the time now by my hospital consultants. Prof D'Cruz is at the top of his field and has told my Gp I don't have lupus so they're acting on that.

    I will ask for a referral to a nephrologist - (There is a kidney treatment centre in the same building) tomorrow when I go in for my blood test, and I will ask to see the Prof. again. BUT- I am concerned right now.

    I realise that you may not get this post until tomorrow, and that it may not be seen by anyone until tomorrow, and that I am responsible… I'd like to have some advice if poss though.

    My lower legs have swollen up terribly today. My feet don't look like my own and it hurts to weight bear. My back really hurts lower right side. It hurts to put pressure on it.

    I have no idea if this is an emergency, and I know this sounds bad, but it is just not a good time right now. My poor dog is crying in pain (he is only 2) and needs to get back to the vet, my middle daughter is having a crisis of her own that she's going to need me for. If I can just wait a few days it'd be a good thing, but I realise I know nothing at all about the actual disease process of SLE Lupus or any other type. I know it attacks connective tissue and it can affect organs. I've tried to put the idea of Lupus away because I am on the treatment regardless, and besides, I have been told I don't have it. I do have APS, MS, Pernicious anaemia, Vit D deficiency & folate deficiency. Oh, and Lupus 'Like' syndrome. Think that's it.

    So basically, my question for which I hold nobody responsible for any advice offered… is this kind of thing an emergency situation? I am very calm, but concerned.

    Thanks,

    Annie x

  • YES !

    Wish I was in the same time zone.

    I know you're feeling miserable right now but I think with severe odema like that you need to get yourself to a Hospital and get urgent treatment.

    You've got a complex medical profile and even it its not the kidneys then its something else that needs real attention right now !

    Just the APS alone can cause some fairly scary blood clot - internal organ damage.

    For your fluid levels to be that far out of whack means something serious is going on. You also need to consider that the fluid build up might not only be your limbs, it could be effecting areas that put pressure on the abdominal internal organs that you cant see or feel.

    Don't wait any more. Go to an ER.

    (ps. If you've already been to your GP and she hasn't done anything or explained whats going on - go to an ER)

    xox

  • Hi 1sam.

    Yep.

    Its pretty terrifying dealing with GPs when most of the time they only deal with coughs, colds and infections and tend not to be able to think more broadly than that.

    I hope in the end you didn't end up with too much renal damage ?

    xox

You may also like...