Water retention doesnt seem to be easing at all

Hi all,

I am hoping someone is able to share some experiences or advice as I am a little bit worried. I am a 28yr old female who has recently been diagnosed with class 4 Lupus Nephritis (only in the past month).

.I am currently on 60mg of steroids and immunosupressents along with many other meds as you can all probably relate to. I have suffered alot with water retention over the past 2-3 weeks.My whole stomach area is swollen and tight, upper legs are tight and full as well as ankle swelling. My dosage of furesomide has been doubled to 80mg twice a day but the water just doesn't seem to reduce. I seem to wee but its minimal. I have limited liquid intake to 1 and half litres per day and cut out salt completely as the doc recommended. I am unable to go to work and really have difficulty with my mobility at the moment as I am tight all over. I just want to feel mobile again.

Would any one have any other tips or advice at all?

Thanks in advance.

5 Replies

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  • Did they give you a helpline number to call the hospitsl on for advice? If not I would suggest going to your gp. We are all lupus patients and it sounds like you need medicsl advice/attention. Maybe someone on here with Stage 4 nephritis can help advise you. All the best

  • Hi rooks1984,

    Sorry to hear all your going through.

    Sounds very familiar as I experience the same thing when i was diagnosed with Lupus Nephritis in October 2011.

    I remember having to be restricted to 1 litre of fluids a day too which was sooo hard because the Lasix (furosemide) really dehydrates you. And it's a real pain trying to get around and do the things you normally take for granted. I wish i could remember the reason for what the reason is for the restricted fluids???

    I remember that my doctor wanted to to a biopsy to determine if i had lupus and if so what stage and so he wanted to keep me (wet, his words) basically all swollen and puffy?

    Are you leaking Protein in your urine?

    I noticed that by having the Lasix via IV it was more effective, if your having any treatment done perhaps you could ask your doctor to give it to your via IV???

    Did your doctor say how long you will be on the restricted fluids for?

    All i can say is that this is only a temporary thing. So don't let it get you down, this is beginning and things will get better.

    If you want to ask me any questions or advice, feel free to message me.

    Big Hug xxx

    P.s. I would really recommend keeping a journal (adding info. on new med's your being given, dosages etc, as this really helps)

  • Hi,

    I would suggest to speak medical advice. I am interested in your post. I have Lupus and Hughes but for over a year now my ankles swell but more my left than right. I retain water. I drink loads but wee little. I can go 8 hours or more without seeing. I'm under physio and awaiting to see bladder specialist . I wonder whether the Lupus could be causing the problems I do get stress incontinence when, cough and sneeze but not all the time.

    Any ideas?

    Andrea x

  • I also have Lupus Nephritis and limited kidney function due to scarring damage. I am on lots of meds and fortunately have a wonderful Renal consultant and can ring his secretary anytime l am concerned, he usually sees me the following day as he understands l need to be monitored very carefully and regular blood tests. My ankles to tend to swell but l have no limitation on the amounts of fluid to drink, quite the opposite my consultant tells me to drink as much water as l can. I drinks hot water with fresh lemons in it which seem to help and another way of getting necessary vitamins and seems to help with digestion as l also have Celiac disease and suffer with heartburn due to meds. If l can be of any help just let me know :)

  • Hi all,

    Firstly sorry for the late reply and thank you all for all of your responses and advice. This site is fantastic and its nice to know so many people are willing to share experiences and help each other when we all have so many crazy things going in with our bodies.

    I did follow your advice Pattimsith and called the consultant. You were right they were very attentive and ar happy for me to call anytime with any kind of concerns i have.however minor I think they are. They said they would prefer me to check everything rather than be concerned or ignore anything. This is definitely reassuring knowing they take everything so seriously.

    I have been told that due to the Lupus being so aggressive at the moment and it effecting the kidney i am leaking a significant amount of protein which has lowered the albumin and protein in the bloods. This will cause swelling until the steroids and immunosupressants kick in and calm the lupus down. My Furosomide has been increased and I do seem to be urinating a lttle bit more but the unfortunately its a waiting game til the meds kick in and calm the flare down, I will be asking the doc on a weekly basis about other options which you all have suggested if I don't see i an improvement. its just so frustrating feeling like a beached whale all the time and from doing everything for myself to really struggling to do basic things. I have also been signed off from work for a whole month as a result. I'm lucky that they have been supportive and understanding though.

    The journal idea is really good and have started with that too.

    Thanks everyone.. I'll keep you posted on how i get on. I'm hoping for some improvement soon.

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