My Mum - Lupus Nephritis | Lupus Forums at The Lupus Site
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My Mum - Lupus Nephritis

Discussion in 'Chit Chat' started by Richyrich, Jan 16, 2008.

  1. Richyrich

    Richyrich Guest

    Right my first post so hello to everyone.

    My Mum has been diagnosed with SLE since she was a teenager. As a small child I remember frequent visits with her to the hospital, and even have vague memories of her in a wheelchair.

    She had a long period where her symtoms were under control and she was off all treatment. However over the last year or 2 she has steadly deteriorated. Her skin has continually broken out in a horrific rash, she no longer produces tears or saliva, she is very lethargic, has very bad joint pain etc etc. She has been on and off oral steriods and chemo.

    Over the xmas period her symptoms have worsened to the extent that any physical exertion (i.e. walking her dogs) causes her joints to swell and she ends up on the sofa for the rest of the day. She had a check up on Tues and a urine test showed lots of blood, which has led her consultant to admit her into hospital this coming Friday. She is very concerened about this as she tells me that any renal involvment can be serious.

    I'm starting to get quite worried about her. Can anyone give me any info on renal involvment and the seriousness of this change in her symptoms.



    P.S. She's in her late 50's now and I'm not that little boy anymore (31)
  2. LolaLola

    LolaLola Registered

    Hello, I don't have renal involvement so I am not an expert on this. It certainly sounds as if she needs some thorough investigation. DOes she have a good Consultant?
    I am sorry she is having a bad time,
    x Lola
  3. hey! am claire and im 18,
    im really sorry to hear about your mum. i've only been diagnosed for about 3 months now, and i have lupus nephritis!
    i dont really know too much about it as im new to it! but im on a tablet called cell cept for my kidneys and they work really well, i havent had a flare up since i started treatment.
    i hope everythin works out ok!
    im always here to listen! :) x
  4. Joandublin

    Joandublin Registered

    Hi Rich

    Welcome to the Forum although Im sorry to hear about your Mum. I altered the title of your post to include the term Lupus Nephritis as this may catch the attention of some of our members who also have kidney problems from their Lupus. Unfortunately the kidneys seem to be the 'favoured' organ when it comes to SLE.

    It seems like your Mum's Lupus has come out of remission. Its unusual (but certainly very possible) for people with SLE for a long time to suddenly develop organ involvement so thats a bit of bad luck. Statistically most people who are going to develop organ involvement do so within the first five years post diagnosis.

    However, the good news is that your Mum is being admitted for treatment and with good management and medication there are excellent outcomes for Lupus Nephritis. This will probably involve aggressive forms of treatment however - usually immune suppressants and/or steroids.

    I think it is very useful that you are informing yourself about Lupus and in particularly how it affects your mother. If your mother is willing it would be a good idea to talk to her consultant about the test outcomes, proposed treatments, precautions, etc.

    Here is a link which explains about kidney involvement in Lupus and also discusses the classes or stages of Lupus Nephritis. It would be useful to have this information so that you and your Mum are better prepared to ask questions of her doctors.

    Hopefully others will be along soon to share their personal experiences. Just keep checking your post.

    In the meantime I wish your Mum the very best of luck tomorrow and if we can be of any help at all just post.

    Take good care
  5. Richyrich

    Richyrich Guest

    Thanks for the replys.

    Firstly she has an excellent relationship with her consultant who's treated her for approx 28yrs. He's a consultant rheumatologist although I understand that SLE is hard to categorize and patients are often under a variety of specialties (dermatology/haematology).

    Is it rare to develop the nephritis side of the disease after having no renal involvment before? Also most of the literature refers to proteinuria as an symptom of renal involvment in SLE patients yet she tells me that there was no sign of protein in her urine just gross haematuria.

    Anyway I know its hard to answer any of these questions until further investigations have been carried out.

    Thanks again,


    P.S. I'm a paediatric nurse so have some medical insight, but I have never cared for anyone with SLE so my knowledge on this topic is quite limited.
  6. shes got no protein in her urine?? well thats a really good sign because the sign of protein and blood shows the kidneys are gettin damaged. are her ankles swollen??
    iv read up on lupus and it said that if a patient has it for over 5 years without kidney involvement then more than likely they wont get kidney involvement so i think it is unusual, shes just really unlucky, but i hope shes feeling alot better soon x
  7. SoCalEric

    SoCalEric Registered

    I've had Nephritis for over 15 years, well that's to say I was diagnosed with it and treated 15 years ago and then again when it returned a couple of years ago. I had trace blood in my urine, but a very high protien count. I'm a bit confused as to how you mom can have Nephritis without putting out protien, I was pretty sure the two went together. I would guess she's had a 24hr urine test? I did start to show traces of blood before the protien kicked in. She's had chemo? Cytoxan? Was that to treat Nephritis? How much and how often did she recieve treatment? I had chemo (Cytoxan) both times for Nephritis. 10 treatments the first time (monthly) and four the second. Both times it worked wonders for me. Saw my Nephrologist yesterday and he said next time it returns we'll be trying Cellcept, it's a newer drug and very expensive, but does less harm than Cytoxan. He doesn't want me doing Cytoxan any more if we can avoid it. I'll give it a try when I have to, but the Cytoxan helped me so much I'm kinda worried to try anything else.
    Hope things go well for ya Friday. Please post afterwards on anything you learn. Have to admit I'm pretty stumped on the not putting out protien part, I've never met anyone with Nephritis that wasn't putting out protien.

    Best wishes,
  8. Clare.T

    Clare.T Registered

    Hello Rish
    I hope all goes well for your mother and I am sure that all those who have read about her will be keeping her in their thoughts and prayers.
    It is true that the likelihood of keeping kidney disease after so long is remote statistically anyway. But it can happen, albeit rarely.

    There's a saying, that " The history is the prognosis " meaning I think that most people's lupus stays much the same as when diagnosed and doesn't develop radical new forms.
    From what you say she has been under treatment recently by an experienced lupus doctor so presumably she has been having regular tests which would have shown protein. I am no sort of medic but I rather agree that the absence of protein or other signs of kidney disease in blood or symptoms like swelling would be very surprising if it was kidney disease.
    I do hope that whatever it is, it is not too serious.

    All the best and best of luck

  9. mysharonna

    mysharonna Guest

    Hi Rich,

    Welcome to the site.

    I dont know much about nephritis, but just wanted to convey my thoughts and prayers for your mom.

    It is scary to see our parents get ill, my mom was sick in the hospital for a month, and it was one of the most stressful times of my life.

    It sounds like she is under excellent care, I'm sure she will bounce back from this flare. Please keep us posted.

  10. Richyrich

    Richyrich Guest

    Hey there.

    Thanks again for the comments, really helpful. Not much more to report at the moment. Nothing was done over the weekend except lots of rest which seems to have settled things down (her skin and joints have improved) but as mum says she needs to be able to live and not lie on a bed all day! (Mum's never listen eh!)

    She is going for a renal ultrasound and a chest CT today (as she's had a troublesome cough for a month or so) so I'll keep you posted re the results.

    Regarding her chemotherapy treatment she was on oral methotrexate if I remember correctly but I'll double check on that when I visit later today (I know the trade names of drugs vary between the UK and US but thats the pharmaceutical one so should be universal)

    Anyway take care everyone and I'll be back soon.


    P.S. Roll on summer, don't know what the weather's like where you are but in Aberdeen its freezing!!
  11. Clare.T

    Clare.T Registered

    Hello Richie

    It sounds as if she is more comfortable and I hope they can find out what's going on very soon so you can be reassured.

    There is rarely any problem here with drug names between the UK and USA. Generic names tend to be used more often in the UK.

    We tend to think of methotrexate as a steroid sparing, disease modifying drug, an immunosuppressant rather than 'chemo' which tends to scare people off. The doses used in rheumatic diseases are lower.

    Treatment these days tends to be a mix of drugs since each has a different action. The aim is to get the maximum benefits of each at the lowest effective dose to reduce the risk of side effects. Steroids are used as little as possible because of the serious long term side effects.

    :) Clare
  12. Richyrich

    Richyrich Guest

    Morning all.

    Right the latest update is that the chest CT showed that she has changes on both lungs which her consultant believes it is pulmonary fibrosis (which explains her cough and shortness of breath but not sure of the cause), so he's going to refer her to a chest specialist. He also is concerened enough about her kidneys to want to send her for a renal biopsy but he's unsure which kidney to look at so she's off for her renal US this am.

    More questions than answers at the moment but at least she's getting her investigations orgainsed pronto.


    P.S. I've just read that pulmonary fibrosis can be caused by lupus, its irreversible and there is currently no treatment available, now I'm worried.
  13. LolaLola

    LolaLola Registered

    Dear Rich,
    Thank you for letting us know. I am sure you are worried but let's hope it is not too bad.
    x Lola
  14. Joandublin

    Joandublin Registered

    Dear Rich

    Of course you are worried. It must be very hard to find yourself suddenly having to deal with all of this. Lets hope the chest specialist can give your Mum some clearer indications of what is going on. How is she in herself? It must be such a shock to learn that your Lupus is attacking your internal organs after such a long, relatively quiet period:worried:

    Thinking of you both and hoping for the best possible news.

    Take good care
  15. Richyrich

    Richyrich Guest


    Yesterday didn't go too well. I arrived on the ward just as the chest consultant was talking with my Mum. He was explained that they'd like her to have a lung biopsy to examine the pattern of the fibrosis within her lungs. From my understanding this won't be by bronchoscopy but rather they will have to go in through her chest wall and will mean her having a chest drain in situ for a couple of days. He explained the risks of this procedure but said it would be useful to know this information to decide the next course of action. He was very honest and open with my Mum and said that as she's under 60 she would still be a candidate for a lung transplant, which kind of through me a bit. I believe he feels that it is serious.

    Mum was understandably upset by this. We chatted about things after the Dr had left and she feels that if things were that bad that she wouldn't go through a transplant, I don't think she'd be a prime candidate anyway (because of her lupus and age) and we all know how short organ are for donation.

    She's still waiting to be seen by the renal team although her US wasn't too bad as far as I'm aware.

    She's starting IV steroids today and a medication for her lungs (sorry forget its name, my heads all over the place at the mo).

    I'll update with any news as I hear it.

    Thanks for the replys people.

  16. LolaLola

    LolaLola Registered

    Dear Rich, Please give your Mum our regards. I hope the biopsy goes well.
    Just a reminder to you please make sure you are eating properly and getting enough rest.
    x Lola

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