I have stable lupus which nevertheless interferes with my quality of life as i know many of you will understand. My anti ds/dna levels are often in normal range but about four years ago they went up to 73 and I took steroids for a few months which made me feel better and brought the levels down again over a period of a year. I generally resist steroids and have managed (mostly) on Hydroxychloroquine and pain killers. For a time I had a great consultant in whom I had complete confidence. He routinely monitored anti ds/dna all other markers and clinical symptoms. However my new consultant is very different. He is of the omnipotent school and does not welcome patient input. In fact he seems to think his role is to 'soothe' patients with assurances that he really isn't in a position to make. He seems happiest if you ask about his holiday plans etc rather than asking about blood test results. Having learnt to avoid saying things that trigger his empty assurances about how lucky you are (which I find deeply patronising and offensive) my difficulty is that he seems reluctant to monitor anti ds/dna. He also asks nothing more specific than 'how are you? That and bloods for kidney/liver function and FBC is pretty much the extent of his 'monitoring'. It is really the result of the anti ds/dna test that I find most reassuring as I understand that anti ds/dna can produce complexes that accumulate in kidneys and cause initially 'silent' damage. I am willing to take steroids if the levels go up to try to prevent this happening but not to juse alleviate my pain and fatigue and rashes etc. I don't want to wait until damage occurs and shows up in kidney function tests which seems not only worse for me but worse for NHS. The NICE guidance recommends regular monitoring of anti ds/dna for stable patients. I have asked consultant to monitor it and always ask for my results. Once I noticed he left it off my form and I asked if it could go on and he reluctantly added it but I have just come away with a blood form for next time and there is no antibody screening on it at all. I noticed in the hospital but didn't feel I could go back to him and no nurse is on hand for his patients to go to...its corridor then he calls you then off ...Nobody else is about once you are called to corridor. No other regular checks like blood pressure weight urine dip test etc are conducted either but it is the anti ds dna which bothers me most as this is frankly the bit of the consultation I value most...its why I go. I can monitor how I feel for myself but I can't monitor my own anti ds/dna levels. I know it is good to treat for the clinical picture and consultants don't just go by bloods but this is the one test I think they should respond to when it is high and my previous (excellent) consultant certainly did.
So folks what do you think I should do?
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I would not be happy with your doc. could you bring yourself to have a conversation with him explaining how his lack of care [bit more tactfully than I have put it] is worrying you? I know it's not easy and I have chickened out myself a few times over confronting docs. but it is OUR health on the line and the worry does not help us. or maybe speak to your GP about your worries and see if there is a solution. XX
A rheumy that tells you how lucky you are is one you want to ditch...you could approach him directly as Suzannah suggests, or choose another if you're in a location where you can do that....or a different way would be to contact his GMC revalidation officer (you can find that on the GMC register) and say you're not being treated in accordance with the BSR guideline...my rheumy was lazy until he learnt of my hour with the hospitals' medical director (and his GMC officer), and after that he been attentive, empathic and followed the guideline! All the best! xxx
Thanks so much for your advice. I really appreciate it and I am really glad to hear your consultant bucked up. Why do we have to fight so hard......?!!
It's the triple whammy: medics don't know enough to diagnose, meantime symptoms have us on our knees, then when we're at our lowest ebb, the fight for the right care....but LupusUK and the force of this forum is going to change all that! This is a fine place to be, keep posting and let us know how you go! xxx
I understand how frustrated you must feel and can relate to it. My consultant focuses more on the temporal arteritis I was diagnosed with 9 years ago asking if I've had any pain in my jaw or ear, which are apparently symptoms of the condition, despite the fact I've never had these symptoms. To be perfectly honest, I believe I was misdiagnosed at the time as the only symptoms I had were ESR levels of 120+ and felt very tired and unwell. Biopsy and CT scan at the time were inconclusive. At my last appointment he said he would see me again in 12 months. During pre-op blood tests following an accident it was discovered that I had Lupus Anticoagulant which I passed on to the his rheumatology nurse and now my appointment has been cancelled and put back to May next year making it will be another 10 months before I see him and more than 18 months since my last appointment. My GP has told me that I am showing all the textbook signs of Lupus and is appalled by the delay which she is challenging. I'm not a confrontational person but if I haven't been offered a more realistic appointment with the specialist I'll certainly be creating a fuss. I really think you need to be doing the same.
Thank you I really appreciate that, but having read your story and so many other horror stories about the way people are being treated (or not as the case may be), I realised that I'm one of the lucky ones. Take care of yourself and I hope you get the right support very soon.
I once went to an appointment and the rheum consultant said to me ( before I had even sat down) that what I had was an annoyance. I was shocked and could hardly speak to him after that. A few months later I was very unwell in hospital and he sat talking to me in a patient room and asked me why I don’t speak to him much... so I told him about that appointment. He started shouting at me and when I tried to say something he put his hand up and told me I could listen to him.. so I did, leaning back in my chair eye balling him. When he had finished I asked him if he was finished and ready to move on? Now I have a job that occasionally involves people shouting at me so I was quite cool about it but what an unprofessional fool. It did change his attitude though and he never ever made me feel like that again and turned out to be one of the most sensitive, humane consultants I’ve ever come across. He has left now, I don’t miss his arrogance but he was compassionate.
It isn’t easy taking a dr to task, they don’t like it at all. However, you aren’t getting the proper care and monitoring. Some good advice from other people about how to address it
Good grief...All you needed when you were so ill. He must have been mortified afterwards. Thanks for sharing. It will be January before I see mine again so I have some time to think about it. I have been wondering if I should take a printed copy of the NICE guidance with me.
Hey there - I had a problem early in like that so I wrote a letter to him complaining/clarifying all my symptoms, and test/scan results and copied in his superior, plus copied in my GP. I met with his superior the next time and mentioned I was on brink of contacting PALS Patient Advice and Liaison. My consultant now is always his superior who, thankfully, is wonderful. If you don’t get any joy I’d call PALS and have a chat. Hope things improve for you. All the best, D
I can't help you with the doc problem - they can be frustrating! I wanted to ask you though what life is like with stable Lupus. My bloods are more or less normal yet I still get pain and fatigue, insomnia and a whole host of other stuff. I can't make any sense of it at all. Can I ask what you understand by your situation and what you've been told too?
Hi Treetop. I have had lupus for more than thirty years now. It doesn't feel stable to me....up and down all the time. However it is defined as stable because I haven't had organ damage. I have had to adapt life to my limitations. I chose not to have children and I had to find work where I could be flexible and in control of my hours...judged on output rather than hours at a desk etc. I have to stay in bed longer than normal people....which still makes me feel vulnerable to being thought of as lazy. I have to avoid sun and wear sunscreen. I find it hard to go to a concert or movie because I get very uncomfortable sitting for any length of time. I have to take a lot of pain killers. I cannot push my limits the way most people can in the short term and just fit things in which people don't always understand. It's a bit of a B****r really despite being so-called 'stable'. I am lucky as I found a fit with a good job and I have a very understanding partner but I can honestly see how this degree of lupus can destroy people's quality of life. I hope this account helps you understand your own situation or maybe it might help people around you understand. These invisible conditions (except when a rash comes up) are really tough for the world to understand. Hope you get the support you need.
Thanks Driven. That all sounds very familiar. I only got diagnosed 3 years ago and already had a young child and work, and it's been a lot to adapt to. I'm lucky in that it has quickly gone into 'remission' (I say luck - also a lot of hard work and adjustment) but it most definitely doesn't mean a cure. I am left with pain, aches, fatigue (definitely relate to the sitting still thing) and then the whole plethora of little niggles like being in the sun, headaches and puffy-ness etc.
i'm glad you have been able to adjust your life but it all sounds so unfair...x
I very much relate to what you are describing here.
I have only seen my rheumy twice in 3 years but I was regularly seeing the vascular dr who shares clinics with her.
I’m seronegative (+ANA though) and I’ve always had my ESR/PV and CRP checked to monitor disease activity - first for misdiagnosed RA now for Sjögren’s. These and my IgG levels are high when I’m in pain and near normal when I’m feeling relatively well so for ms they are dependable ways to monitor me.
So slowly but surely, by influencing my rheumy and neuro - this vascular dr has got me off Mycophenolate (fine) and has persuaded my other doctors not to bother using PV/ESR or CRP because he says they aren’t relevant to Sjögren’s. So much of what he says is questionable to me but he refuses to acknowledge my patient expertise in understanding my own bloods and what is normal or high for me.
He just says Sjögren’s will always show very high PV and my fatty liver (which is mild and was not even mentioned by the gastro who ordered it to be viewed on ultrasound at my request) is the reason my CRP is pretty raised. He says this is my new normal and instructs all my doctors to ignore these markers. He won’t check these or my antibodies and ignores trace blood in my pee and lowered e-GFR.
My new dermatology prof mentioned in her letter that she believed I have an overlapping CTD from certain observations about my skin and nails. But when I went back last week she said that she can’t talk about possible vasculitis or CTD with me and I need to speak to him or my rheumy about these. What?! So he’s got to her too?!
I’m so infuriated by him and his insistence that there’s nothing can be done for Sjögren’s so I may as well stop being under rheumatology altogether now. It’s like speaking to a softly spoken brick wall!
As you say there are good doctors who aren’t freaked out by patients who know how to interpret their bloods and match them to knew or worsening symptoms. And there are those who find us very annoying and belittle our diseases and the impact they have on our lives (mine at least doesn’t do that but he belittles seronegative presentations of rheumatic diseases generally). And all with this implacable smile and gentle ever so patronising tone of voice!
Last time I got my bloods done at GP practice a few months ago and my PV was 2.04 which is probably like ESR of over 100 - CRP was 26. I emailed my rheumy directly and asked her if I could have a steroid shot. She agreed so presumably she didn’t think these results were my normal?!
I can’t kick ass because I’m not on meds and my specific (ENA) antibodies don’t support how I feel but my GP has written to my rheumy saying I’ve lost confidence in him now, requesting that I’m moved back to the main rheumatology clinic rather then dispatched back to primary care. I’d see your GP for starters as they can check your BP, urine, weight and anti dsDNA etc.
Poor you Twitchy. Sounds awful. Hope you get better support from the main clinic. I think the contacts we have with medics are so superficial it is easy for one or other of them to label us and impact on all our treatment. Very hard to combat. Glad your GP is helping. Good luck.
Thanks Driven. I’m feeling extra stuck because I can’t access my GP unless I can see her as an urgent on the day case as my practice has gone into meltdown with 4/7 GPs off long term sick or on maternity! X
If you are unsatisfied with your current consultant then perhaps you could discuss with your GP about getting referred to someone else, preferably with a specialist interest in lupus? If you'd like information about any lupus specialists in your area, please just let me know whereabouts you are based.
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I really appreciate that, but having read your story and so many other horror stories about the way people are being treated (or not as the case may be), I realised that I'm one of the lucky ones. Take care of yourself and I hope you get the right support very soon.
Anti DS DNA results 
Lupus or not lupus?... That is the question...
Stopped taking all meds
I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with .. 
