Panicking about blood in urine - lupus nephritis - LUPUS UK

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Panicking about blood in urine - lupus nephritis

November90
November90

I'm having a night time panic, and wondering if I should try to get an urgent doctor's appointment in the morning, or if it would be better to go straight to the hospital first thing!

Background: I was diagnosed with lupus nephritis in the early summer, for which I've been on MPA. Recent blood tests were okay.

This evening I've been needing to pee a lot (but no pain or anything), as in, every half an hour or so. And the last time I was in the bathroom I noticed that my urine was really foamy and red - like, really red! So now I'm having a huge panic that the kidney problems have flared up again.

But I'm feeling absolutely fine - no fatigue, no swelling of feet and legs, not unwell at all. So perhaps it could be a UTI ot something I ate or drank?

I am worried about wasting people's time if I rush for an appointment and it turns out to be nothing... but also worried that it might be something wrong.

I'm honestly just praying that it isn't another flare. I so wanted to be getting over this!

12 Replies
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If I were you, I would see the GP this morning, you’re not wasting anyone’s time and for you it’s peace of mind. Good luck xx

As you’ve been diagnosed with lupus nephritis and have sudden red and foamy (can be sign of protein) urine, no one will think you’re wasting their time getting it quickly checked out. Might be nothing but best to be sure and the quicker these things are caught the better.

I would have thought contacting your nephrologist/ rheumy would be better than GP though as they will probably want to see you and check it out themselves quickly and going through GP will just add to the time (unless yours is like mine who sends you straight to A&E for lupus issues)?

Good luck and hope it’s something small and easily treated but definitely get it checked out today x

I actually thought about that - I'm going to call the number I have from the hospital department now.

I've been waking up all night to pee and it's still all foamy and red. I'm really scared. I just wish that it would be nothing but I'm scared that it won't!

Unfortunately not good news - I'm in the hospital now and my kidneys seem to be in really bad shape again, judging on the bloods and ultrasound. No infection though (and annoyingly, I'm feeling totally fine!). They are talking about trying Cytoxan (sp?) which I'm a bit unsure about. Does anyone have experience with that?

Melba1
Melba1 in reply to November90

Oh very sorry to hear this but you’re in the best place to get sorted.

Yes I’ve had 2 doses of cyclophosphamide (brand name cytoxan) so far and due to have a course of 6. It’s not too bad, felt quite sick for a few days after the second but rheumy/ nephrology teams say has put lots of their severe lupus patients into remission. Depends on your age though in terms of reducing fertility so if you haven’t had children yet they’ll need to discuss that with you. They often do a biological (I’ve had rituximab) which can really help too so worth talking through the options.

Big treatments and difficult scary decisions but lots of people with lupus nephritis can get really good remission and very normal lives when the treatment is right.

Lots of love to you and your kidneys xx

November90
November90 in reply to Melba1

Thank you and wishing you all the best for your treatment. It is great to hear positive stories. I am feeling a bit catastrophic at the moment!

Thinking healing thoughts for you. You did the right thing with your organ involvement always err on the side of caution and get seen quickly. I have no experience with cytoxan personally, it is an immunosuppressant reserved for severe kidney involvement and is effective. I hope it helps! Xo

In the end they've decided that Cellcept would be better than Cytoxan, which I'm pleased about because I was a bit wary about the Cytoxan. So earlier I heard about all the lovely side effects and started on that. Fingers crossed it will work!

They're also worried about my platelets and white cell counts because apparently they're super low (again). Apparently this is the main reason to go with the Cellcept rather than Cytoxan, since it's less likely to make the problem worse, but they are talking about doing a bone marrow biopsy, I guess to try and work out why the numbers keep going so low!

I'm just feeling utterly fed up and I don't want to have to deal with this stupid illness any more. Sorry to be a bit indulgent and self pitying! The weird thing is that I actually feel fine! I know I should be grateful that I've been diagnosed so quickly, that I'm getting all the right treatment, and that I even have a fantastic and lovely GP who is super clued up on lupus and (already!) rang me today just to ask if I was ok and to let me know that I need to book weekly blood tests while on Cellcept. But I am finding it hard to think positive thoughts and I'm just worried that my kidneys won't get better, etc. etc. Doom and gloom!

Roarah
Roarah in reply to November90

You have every right to be upset! This stinks but you seem like a strong fighter and I believe you will be in a remission soon. You have a good team it seems and you ask the right questions and seek help when you need it. You deserve a good cry you have had a very terrifying couple of months. Your body needs you to rest abit and let the doctors worry about the rest. Xo

November90
November90 in reply to Roarah

Aw, thank you for understanding - I just want to be better and I am frustrated that it's not in my control! But I guess that all I can do is follow advice and try to keep positive! Xx

Hidden
Hidden

Hi,

Do you see a Nephrologist or just a Rheumatologist? What treatment were you on before if they are just going to start you on Mycophenolate now?

Sorry lots of questions but wondering how well you have been monitored!

November90
November90 in reply to Hidden

Yes, I've been under a nephrologist as well as a rheumatologist. I think the nephrologist wanted me to do Cytoxan (I had Mycophenolate on my last flare, although it was different) but the rheumatologist vetoed it because of my low blood counts.

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