Yes, it can be a worrying business, with so many horrible sounding possibilities, scary new meds and many uncertainties. But this community has people in it who have lots of experience and the Lupus UK admins are also active and very helpful. Since my own diagnosis a few years ago, I have found it hugely supportive. Whatever your worries or questions, you need not feel shy about posting them here. Above all, it's a way of knowing that you are not alone. So please do keep in touch x
Hello dansak: am glad you’ve found us! Whisperit’s experience of this wonderful forum is v like mine...finding it made a huge pos diff to me back in 2011 when i discovered i’d been living with lupus ever since i was a toddler...at that point i was in my late 50s and had been managing bad depression for a long time due to the strain of feeling so unwell all over pretty much all of the time for decades.
7 years on i feel much better in every way - not just cause my medics have figured out the right combined therapy meds for my version of lupus, but also cause i know that this forum is here for us all 24/7 + that lupus uk is standing up for us in so many other ways!
You’ve probably visited the lupus uk website, but, if not here is the link to its downloadable publications page:
Hi there! That's a very cruel situation to be put in, when it's tough enough having an SLE diagnosis. If you need a nephrologist, then the sooner you have treatment the better...if you are in England, you can shop around for a consultant:
The kidneys are a bit of the body that need quick help.
You could go back to your GP for medication to tide you over till you have counseling..unless you're in Scotland, where you can have fast-track access to support.
If you have the means, a private consultation would get you on the right treatment plan very quickly...lots of folks here on the forum have experience of that and could help direct you.
It's great you've joined, WELCOME, and the forum has changed my life forever so I hope it will yours too! Barnclown and Whisperit I will hug till their ribs almost break when I meet them! 🤗🤗🤗
Its a worrying time and unfortunate that you have a delay in seeing the specialist?
Can I ask... have you seen a Rheumatologist or are you purely seeing a Nephrologist?
Has any spoken to you about Lupus Nephritis as I have this as well as SLE and I assumed this was the only reason I see both a Rheumatologist and Nephrologist.
I was only diagnosed in Feb so if you do have Nephritis I would be more than happy to share my experience so far xxx
No I was just referred to the nephrologist. due to the blood test. Initially it was a urine test that identified protein in it. I have had a severely inflamed achilles tendon for 13 weeks now. I hadn't made the connection with lupus...Is this likely ?
I had felt ill for about 2 years... bouts of severe weight loss as well as gain, deteriorating mental health, chronic joint pain, sjogren's syndrome, reynards, but as my mum has SLE I repeatedly asked to be tested, my GP repeatedly said that my results showed I definitely didn't have SLE. Took 2 years to eventually get a referral to Rheumatologist but as soon as I saw the Rheumatologist he said he believed I had been suffering with SLE for over 2 years and not once had my GP completed the correct tests by then I had developed chronic Nephritis and have he believed been suffering with RA for at least 20 years... within a week I was in a Specialist Kidney unit as my blood pressure was through the roof and needed reducing to allow a biopsy.
Do you have high blood pressure? Frothy urine? These are all signs of Nephritis. Any type of joint pain can be connected but the issue is all autoimmune diseases have the same or similar symptoms so until you see a Specialist it's very easy to Google and see the worst case scenario.
My Rheumatologist has been amazing and very honest about the realities of the treatment and as bad as it has been over all it's not been anywhere near as bad as I imagined.
I would suggest taking each day as it comes, once you see your specialist you will get some answers and hopefully allow you to start moving forwards and feeling more in control xxx
Hi, I am already on ramipril and amlodipine for blood pressure for a few years now and also statins. yes my urine is frothy too. I have made an appointment to see my GP again next week and press for an urgent referral
Hi , can I ask what symptoms you have been having which prompted the visit to gp and the blood test . I can't believe a gp told you to go home and Google it most would say don't read things on the internet as that could worry you further . I suspect the gp knows little about the disease , a lot don't have a clue unfortunately . I would ring the gp and say after checking on Google you feel a referral should be sooner as lupus can cause irreparable damage to the kidneys , when I was diagnosed from a blood test done by gp I was sent to the hospital for tests immediately and the hospital wanted to admit me for a week of tests including a kidney biopsy which confirmed lupus nephritis .
It was protein in my urine. I had pleurisy for months, but it was never explored. I have bouts of fatigue, but again just thought It was just me being tired because of stress.
I was referred to the nephrologist as urgent. But when I rang for an appointment, I was told the consultant would read my notes and decide if it was urgent, and that the waiting times could be months away. So I dont know what to do now
So sorry you've been left in limbo. Insist on an urgent appointment and make reference to the score sheet for SLE assessment (sledai-2k.com/sledai2k.pdf): pleurisy and protein in urine alone warrant urgent treatment.
Get a same day appointment with your GP so he/she can also call the nephrologist as well, referencing the ONLY medical professionals guidance for SLE in the UK (academic.oup.com/rheumatolo... - Table 7, and ask for a referral to Rheumatology too.
And yes, SLE can cause inflammation in any part of the body, including tendons.
It's a terrible thing, having to organise your NHS care when dealing with a horrible diagnosis, but there are many folks here in the same boat, so we're all behind you! x
Keep at it so you get a nephrology appt asap! The other symptoms will get sorted in due course. All the best. I got my GP a book on lupus from Lupus UK as many are really ignorant.
Good luck
Would be useful if you could get a printout of your blood results (done by GP) and post it on here.
As an extra to what comments and helpful advice you have here, mine would be to join Lupus Uk! go on the website. Loads of info on there and Paul Howard is brilliant on that team xx
Could it be the average time to be seen by the nephrologist is three months for non-urgent cases? The fact that he is looking over your records indicates he is looking carefully at your record to be able to assess the urgency. In a sense, all referrals to a nephrologist are urgent. Patients do not refer themselves, and it is a viral organ. The medical system is over-burdened. But doctors feel enormous responsible to do care for patients. In your case, the nephrologist has to answer to your g.p. too. Try to have faith that if you need to be seen immediately, you will be. Don’t hesitate to call your g.p. for reassurance once you get your appointment. You have a lot to adjust to right now. It must be a lot to take in.
Hi KayHimm, in the UK, the NHS has treatment time guarantees/pledges. An 'Urgent' referral from a GP means an appointment with a consultant within two weeks, or indeed, a referral to hospital immediately, as a couple of folks in this thread experienced. xxx
That makes sense. Urgent is certainly not three months! Good to know the NHS guidelines. We don’t have a national health care system in the U.S. but I suspect gps expect their patients to be seen within two weeks if they indicate urgent.
Thank you for explaining the process and timescales. I really appreciate it.
It is a lot to take in, and the more I read, the more I panic about what the future holds and how I will cope..But I am trying to stay focussed and take one day at a time.
I cannot find the definition of urgent referral specifically regarding kidney issues, but in other areas I saw « two week maximum » or « four week maximum. » I know you have a lot of worries right now but really believe you can feel assured you will be seen in the necessary time frame. Your doctor said urgent. He meant urgent. I think the person you spoke to on the phone was an office worker and does not grasp the triage system.
I'm reluctant to increase the confusion, but can't resist weighing in on the waiting time issue,.based on both my experiences as a patient, and from my previous life triaging specialist referrals.
In my experience, the normal (non-cancer) system goes like this:
- the specialty will have guidelines on what counts as a 'routine' and what counts as an 'urgent' referral.
- regardless of what a GP requests, the triage team (acting on behalf of the consultant) reads the referral and sees whether it meets the criteria for 'routine' or 'urgent'.
- it gets put in whichever waiting list it meets the criteria for
- the GP then gets a letter telling them whether the referral has been accepted, with reasons
If the patient or the GP is unhappy - for example, if the referral has been declined, or if it is put in the 'routine' list instead of the requested 'urgent' list - they will have to take the initiative to contact the specialist service to point out why the referral has been incorrectly classified. Once in a blue moon, the specialist will bend their rule and slip you in early (eg if you keep bugging them for a cancellation slot), but the best bet for getting re-allocated from 'routine' to 'urgent' is to know what the criteria are, and send the extra information that gets you into the urgent category (GPs sometimes fail to mention the very thing that makes a referral truly 'urgent') .
So I would suggest:
- wait for a week or so after seeing your GP (to give time for the referral to get written, delivered and considered in a triage meeting)
- ring the department to ask if your referral has been recieved, and if so, what waiting list it is on
- ask what is the likely waiting time
- if you are unhappy with the answer, ask to speak to someone on the team who would be able to clarify why you are not being seen 'urgently' as your GP requested.
- be polite
- don't give up (e.g. ring and ask if there are any cancellation slots you can fill)
Depression is part of Lupus SLE. Your Doctor is an Idiot telling you to google it, enough to scare the Bejazes out of you. They found out I had lupus when I was 40, after years and years of them not knowing what was wrong. I am now 71 and have 2 grownup children both in their 40's. Don't be frightened, try the Lupus UK site, and do Join the society and they are More than helpful. I run the Sheffield Lupus group and we have a 'Lunch and Laugh' every 2 months and people come from as far afield as Leicester, Doncaster, Derbyshire. We also have a Sheffield Lupus group page which you are welcome to look at, but I suggest you contact Lupus uk, they are on line and will send you leaflets that will help you. You are NOT ALONE. There are Thousands of us all round the world and a lot of us have made new friends because of it. You are welcome to contact me on hazelorio66@tiscali.co.uk anytime and I will get straight back to you. I am on holiday from The 16th to 23rd this month and other than doctors and hospital visit I will be home. Good luck - If you live withing traveling distance to Sheffield I can recommend Dr. Akil at the Royal Halamshire Hospital. Yours here to help Hazel Hollingsworth.x
My only experience of urgent requests is getting a phone call and appointment before the letter arrives.
This was, though, in my previous practice where my visible weight loss made my GP fear the worst at times. He once sent me to the hospital right away and said they'd be waiting for me. I had to race around getting someone to take care of the dog. If I'd known a lumbar puncture was waiting for me I might have grabbed my passport instead ( that is definitely a joke BTW)
I have an appointment in 2 days with the GP. I shall investigate that as well as other issues that have been highlighted by the other wonderful people on this forum.
Your symptoms seem very similar to mine 20 years ago at my original diagnosis. Currently nephrology lead my treatment as protecting my kidneys from Lupus is very important and any meds I'm prescribed by nephrology also help reduce other Lupus symptoms.
I'm confident that when the nephrology consultant sees your blood tests they'll want to see you ASAP.
Please try and google local counselling services near you. I put myself through counselling a while back and I paid £5 per session. It was completely professional but a service that is offered at a reduced rate to help those that need it. As you already suffer depression it would be in your interest to pursue this avenue at your earliest. I think you should be extremely proud of yourself to open up to suffering depression !!! I admire you. If I can help in your search please feel free to message me and share your location and I will have a search for you. I hope you have a good day today, try not to google too much about the illness this will increase your anxiety. Talking to others on here should hopefully reassure you and give some comfort that you are not alone xxx
Thank you Lisalou. I am waiting for one to one counselling which has been offered to me, but I'm told it will be about another 4 weeks before an appointment is available.
It's with changing minds IAPT service in Northampton
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Newly diagnosed - Struggling for answers
I'm newly diagnosed and I'm scared :-(
Newly diagnosed
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Newly diagnosed. 
