I was only diagnosed with lupus a few days ago, after six months of being told I have stage4 CKD, currently at 21%
.Eight years ago I was diagnosed with severe anaemia by my GP, which with retrospect I think was a symptom of Lupus and the cause wasn’t looked into. I don’t have the energy to be angry about the past.
Now I am totally in the dark. Since my GP referred me to the renal unit I don’t seem to be under his care. Now I’m a registered patient for CKD under three different hospitals who don’t seem to talk to each other. And now I’ve been told I have Lupus Nephritis I haven’t a clue who my clinic/doctor/consultant will be.
At such an early stage of this in my journey I don’t expect anyone can help me right now. It’s just so very scary😢
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C0rnflakes
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I just wanted to send a hug - sounds like you’ve been going through a lot. I’m also newly diagnosed and feeling a bit lost in the system - it’s not great. I’m afraid I don’t have any pearls of wisdom, I just wanted to reach out and I really hope you get some answers soon x
It’s a long and frustrating process but over time you will settle and live your best life.
It seems there are so many variables of this condition it’s not easy to give or get a reliable view on what is to come . Some people have very few symptoms and have little disruption to their life, let’s hope that is true for you.
Sorry I can’t offer much help but You’ll get a lot of support, friendship and ideas from this group so stay in touch.
I had an issue a few of years ago and called PALS to make a formal complaint. I had a call back within the hour and was then given an appointment with a new rheumatologist. It wasn't quite the same situation but I was also in the dark about diagnosis and medication. So my advice is to be assertive, get some information about what is happening with your care from now on and who will be involved. And I think I would use your journey so far to illustrate that you haven't been kept in the loop.
How do they know the CKD is from LN? For a definitive dg they need to biopsy your kidney? Has this been done? The biopsy shows not only if it is LN but what tyt type -there are 5(this is different from the ckd4), once they know the type then they can decide what is the best immunosuppressant. Im not in the UK but I agree with the above poster, raise hell until you get the right specialist so you can go on meds, asap is best, the sooner treated the better outcome, Many times ckd4 can be reversed to ckd 3 or even normal gfr if treated.Good luck
Hi, thanks for your message, I had a kidney biopsy just over three weeks ago. One of the renal team were supposed to call me Friday afternoon to discuss the results and agree what steroids I had to be prescribed, but no-one called. So at the moment I all I know is that it’s lupus nephritis.
So please chase your results as nephritis ranges from mild to serious and it depends on the type, and you also need a rheumatologist to sort out the lupus end of it. Don't be afraid or intimidated - just speak calmly and firmly - as many deep breaths as you need. I have SLE, had a mild nephritis in the past and many moons ago worked in renal nursing. Sending hugs and wishing you well.
I am very sorry you are going through this and not given good explanations. It sounds to me from what you have described that you are someone who is presenting first with kidney involvement. Your GP must have gotten concerned after blood tests and urinalysis were abnormal. He sent you directly to the nephrologist to be diagnosed and treated.
It does sound like a long time. Did it take a while to get the biopsy scheduled? It sounds like the biopsy was showed lupus nephritis. You may not have had other things that pointed to lupus. Everyone presents differently.
Please know you will be well cared for by the appropriate specialists. I know you feel lost now but everyone involved is treating this with urgency.
I have had a lupus like illness for many years and only once had abnormalities in the urine. It was followed very closely. I have recently had issues that would seem unlikely to be from autoimmune disease at my late age but rheumatologist is doing lots of tests, adding to urologist’s, to see about kidney function.
Not sure that will make you feel better but I can tell with the kidneys, they don’t mess around. And I know the treatment for lupus nephritis has gotten better and better with new drugs.
I get people here will give you reason to be hopeful.
You will probably be referred to a rheumatologist but they may want to focus on treating the kidney disease right now. There is not much a rheumatologist can do unless they are the ones treating the kidney disease, which happens in some cases.
I’m feeling low, confused and very much in the dark. After loads of blood tests, urine samples, kidney ultrasound, they couldn’t determine the rapid loss of kidney function. From first diagnosis last July, I had my biopsy this January. I know I’m being looked after by a renal team and it was a phone call after my kidney biopsy when I was told I had lupus nephritis. I was promised a call last Friday afternoon to discuss things further and to explain what steroids I would be prescribed, but the call didn’t happen. So I’ve been in limbo all weekend.
That is hard. Can you call on Monday? Sounds like they are ready to get treated started. Lupus nephritis treatment is very well researched. The kidney specialist knows what to do based on your biopsy.
The NHS has clear guidelines regarding treatment. The six months sounds like a long time but there are actually time frames they have to follow. I am sure they followed those guidelines.
Thank you for your concern about me. Didn’t want to change the focus but to assure you how seriously doctors take any possibility of kidney involvement. Happened to have appointment with oncologist late in the week and he mentioned kidney too. One test seemed off but no call. Think that is good. Like you, having kidney ultrasound in a few weeks. Not always easy for them to put all of these things together.
Try to have faith in your medical team. It will take time to establish a relationship. You are going to have to go in for frequent follow up so you will get to trust the nurses and doctors.
Keep taking deep breaths and know you will be cared for.
By the way, sounds like you were a tough diagnosis. Until they did the biopsy, they really may not have known.
Really sorry to hear about your situation. I think it would be positive to go and see the GP to see what they think the situation is. If they don't know, then perhaps ask if they can find out. The alternative would be to write to all three consultants and ask what the way forward is and with which clinic. Hope you get some decent care soon.
As you mentioned, in the early stages, getting the ball rolling with treatments and care can take time, especially with the pressure on the NHS at the moment. Another open would be to seek a private consultant, which will of course come at a cost, however may be a solution for you to get answers sooner, see link below -
Plesae let us know your results, I have Type 5, started on cellcept-didnt fix it and they added tacrolimus and am doing better now, in US I go every 3 months for labs and to see the doctor
I’m new to this forum, but I feel the need to tell you that you have to be an advocate for your health. I’ve had Fibromyalgia for over 21 years and was diagnosed with Lupus SLE in 2012 by then I had several markers like Sjrogens. I’m currently sicker than I’ve ever been in my life. I’ve been in my bed afraid to go to my Rheumatologist because she makes me feel like I’m a bother and I have so many complaints. I collapsed on 1/24 and the ambulance had to take me to the hospital. After being discharged (ama) I’m still so sick. I’ve been to my GP and Rhem again yesterday. I’ve had so much bloodwork done and so many bruises all over my arms. I feel like giving up. I guess what I’m saying to you is; do your research; make a list of what if’s and don’t be afraid to advocate for your health 🤗🤗
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