Lupus Nephritis - Left without treatment for a year, any suggestions?

Hi

I was diagnosed a year ago with Lupus Nephritis, did three months chemo but the doctors proved to be really unprofessional and obviously hadn't deal with a similar case before (outside UK). So I quit and since then I'm only on 200mg of Plaquenil a day.

I will be moving to the UK in September to see a proper doctor. I feel really bad and I'm wondering whether I should continue using Plaquenil. Has anyone with this diagnosis been without treatment for so long? Are steroids the only option (because I'm not going there again, ever)?

Thank you!

8 Replies

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  • I'm not an expert but it sounds like to me that you need urgent treatment. Plaquenil will calm the immune system so a certain extent, but from what I understand about lupus Nephritis is that usually steroids are necessary to stop kidney damage. Sorry no one else has picked up your question.. I hope you are now getting the treatment you need? Please reply xx

  • Thank you for answering my question.

    I’m still not getting any treatment – I will not be seeing any doctor until September-, however I do not feel that it’s an urgent situation. Meaning that, rational thinking aside, I do not feel any worse than I did a year ago – could it be because of the Plaquenil? The thing is that I became horrified with side effects of the steroid treatment. In a large extent, this has to do with the incompetence of the previous doctors, but still…

  • As I said I am not medically trained and I don't know everything about lupus, but still I am concerned that you are still not getting regular treatment.. how do you know that your kidneys are OK? Are you doing regular urine tests? The Plaquanil will be helping keep your immune system quieter, so that's good that you are taking it at least. Is there any way you could get a urine test?

    I know what you mean about the side effects of steroids, I am on them at the moment (only 10mg) but it's the first time I've taken them and I too am finding the side effects horrible. But I am hoping the benefit will outweigh the discomfort. I don't have kidney involvement, but I get joint/muscle/nerve/tendon pain and terrible fatigue that makes life so difficult.

    I hope you can find a way of getting the reassurance you need. Perhaps you could post your question again on here and maybe next time some other people will pick up on it with more experience than me. best wishes xx

  • Thank you so much.

    No, I'm not getting any tests.

    It's just that my life feels like a side-effect and I just can't cope with this horrible treatment.

    Love xx

  • I understand -my life feels like a side-effect too! But I know I will be weaned off it in the next few weeks and this knowledge keeps me sane (well kind of!!). I know a few people on this site would encourage you to get your kidneys tested all the same as it can be a life-threatening condition if left untreated. Wishing you all the best.

    xx

  • Hi, i am newly diagnosed with lupus but think i may have had it for years. 10 years ago it was discovered i had nephrotic syndrome and i had no treatment and it improved. 2 years ago i started getting joint pains and other symptoms so lupus was mentioned then they discovered my nephrotic syndrome was back. Renal doctor has now put this down to the lupus and whilst my kidney function is fine my kidneys are still leaking. he recently put me on steroids and mmf and an ace inhibitor which i have researched and these drugs all protect the kidneys and help to stop them from leaking. At first i didnt understand how but after a lot of research i am getting there. If they can help the lupus symptoms it will stop the leaking and the steroids + immune suppresants stop the lupus attacking your body. The ace inhibitor is to keep bllod pressure down which can cause kidney damage if its too high. I was on high dose steroids for 3 days when i started getting worrying symptoms so have comprimised with my doctor and am now on 10mg. So whilst i have had kidney problems for 10 years i have never had treatment or side effects from it but as i am getting older the renal doctor thought preventing actual kidney damage with the meds would help. I am due back there in aug and have been on meds since may so will update you whether there is any improvement. Good luck with it all and if u are having problems with your meds perhaps you could asked to be changed as apparantly mmf(cellcept) is the preferable drug for the kidneys leaking. Hope i have helped and good luck :)

  • Thank you so much!

    You've been really helpful.

    Best Wishes :)

  • Hi... I think u shud contact a doctor as soon as possible.. Bcoz even I did the same thing and now iam undergoing treatment for nephritis stage 3 &5 ... At that time even I felt that iam good ... But my rheumy said we don't know what our body is undergoing... The symptoms will appear only when its very serious... So I think u shud contact a good doc ASAP. Hope u don't go thru serious situations...

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