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LUPUS UK
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SLE review data collection sheet

Hi Lupies! I'm taking this sheet to my review tomorrow - it's included in the BSR Guideline Table 6, Assessment and Monitoring of SLE. My Rheumie doesn't use it or the Guideline, even though it's the only NICE-accredited guidance for managing SLE.

Here are the links to both:

sledai-2k.com/sledai2k.pdf

academic.oup.com/rheumatolo...

Table 7 is Treatment Strategies, so I'll be able show him Azathioprine is not for me! (yet..)

Stay informed, stay well xxx

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Thanks for that, some good info there.

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Most welcome! Follow Barnclown for academic papers and research, as well as a lifetime of experience: a Fountain of Knowledge! xxx

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Should have added that an increase of 6 points or more prompts a medication review, as does a decrease of 4 or more (ie potentially a move between the mild, moderate and severe activity/flare shown in Table 7 of the BSR Guideline: academic.oup.com/rheumatolo... It's all so very systematic, the monitoring and treatment, if only the doctors all knew...Look after yourselves, take care xxx

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Thanks so much for the links - made very interesting reading last night ! Good luck for your review today - hope it goes well for you

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You're most welcome and thanks, progress on the sinus/nose front! Bloods results take 3-4 weeks but I'd gamble I'll score ZERO this time! Just a run of infections the past few months. Though my review triggered a mild immune response - my waistline was 2" bigger when I came home LOL! xxx

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Bet it seems such a long time waiting for your blood results .

It’s good that you’ve become very knowledgeable about Lupus - at least it then gives you the confidence to push the Drs for the right treatment for you.

I’m wondering whether I’ll have bloods or any other tests done when I go to my first Rheumy appt on Thursday . My last bloods which were positive for ANA and dsDNA were done at the end of May .

X

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The bloods are just a part of monitoring and I'm feeling symptom-free, even my small rash has gone, so I'm hopeful! I didn't prepare at all for my first Rheumie appointment and was simply told to go away and read....which I have done! At that one, I had dsDNA repeated, plus others, was sent for a chest x-ray immediately - that was frightening! - and referred for an abdominal CT. It was scary because I hadn't even thought about questions - not knowing what I was in for - and nothing was explained to me, so I'd always recommend thinking hard about what you want to know! Hope it goes well Thursday! Let us know how it goes xxx

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Hi eekt

Good that you’re feeling symptom free😊.

Were you told at that first appt that it was Lupus and then told to go away and read?

I just want some answers finally! Will let you know how it goes! X

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Cheers Seren! Was told "it looks like lupus, go and read about it" at first appt based on positive ANA,and positive dsDNA plus the rash on my hand. Fatigue isn't a clinical criteria, and a full medical history wasn't taken. Second time round was positive dsDNA, low complement (C4), rash still there - that made 3 of 11 criteria and the initial ANA made four - so it was "you have lupus. I'm happy with that diagnosis (?*?! I wasn't !), go and read about it". And that was the sum total of explanation from the Rheumie! Don't let yours get out of their chair before you have your answers! xxx

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Hi Eekt

How are you?

Hope you’re keeping as well as you can be .

I said I’d let you know how I got on at my rheumy appt. It has been confirmed as Lupus SLE which isn’t good news but at least helps answer lots of questions . I had loads of bloods done and also a chest X-ray today. I am due to go back in September once they’ve seen the results and decide which treatment plan is best for me . I’ll be called earlier if anything alarming with my results.

Here starts my journey 🙁

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XOX I was thinking of you. I found a large glass of red with a good friend, along with one of my favourite dishes (goulash!), was helpful when I found out, to let it sink in. When you're back, ask what means you can contact your Rheumie by if you have any queries...three years in, mine said I can call his secretary and leave a message, he'd get back to me...and you'll have peace of mind that help is always to hand. It's a nasty illness but we can help each other and the medical world to understand it, and one day it will be history, like smallpox and polio. Try not to stress, that's just feeding The Enemy Within! Keep posting! mo xxx

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Hi eekt

Thanks for describing what happened at your initial appointments. I won’t let them get out of their chair until I know more from them than I do now ! Keep well x

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Hey eekt - I thought I sent those recommendations to you previously - but probably someone else. Your Rheumy should definitely be using the SLEDAI - but make sure you go through the questions together as they can think they know the answers to them on your behalf, and haven't even discussed with you... presumption etc.... not good. They should do a head to toe with you... and that includes your mood, ie irritability, and also if you have brain fog, memory loss etc.. Ah - just noticed this is a bit late. Anyway - did it help? What was their reaction to your request for them to use? x

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Hi there! Thanks for replying! I just started posting a few days ago because I was getting anxious about seeing my Rheumie...previous reviews have consisted of him asking if I have any new symptoms then trying to force Aza on me despite the absence of new symptoms...I've never had a head-to-toe, except by a private physio who was agog that I answered yes to half his lengthy health questionnaire, pre-SLE diagnosis...my twenty minutes this time were spent considering vasculitis as the cause of my decades-long nose/sinus problems. GPs wrote off my symptoms as 'lifestyle' for years despite it being as plain as the nose on my face something was up! (I have a partially-collapsed nose). Repeat ANCA and maybe I'll have the biopsy proposed by ENT in 2015 (my GP didn't respond to that letter). SLEDAI and Quality of Life questionnaire now on file, in beside the ignored ENT correspondence from 2006/15! My anti-DNA results take 3-4 weeks so I'll complete the SLEDAI myself then. I've been posting links that will have been posted before in the hope they might be of use to newcomers who don't know what to search for! Take care, stay well xxx

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Yes me too, gotta share eh - it was Paul at Lupus UK who sent me the link to the NICE guidelines and my Consultant Rheumy did the SLEDAI on me at my first with him (the previous appointment with the Registrar just did an abortive head to toe...). Thought I'd look to see if you could do it yourself on the interent and, bingo, there are tons! To be fair to the Registrar who I don't think felt I had SLE, by the tiem I saw the Consultant I had lesions allover my hands and fingers, sore peeling finger tips, and huge red joints on my fingers, in quite a lot of joint and tendon pain allover with exhaustion and was recovering from a hernia op - plus I'd sent a 20 point symptom letter that he read before I got in the door, along with the history of my nearly 2yrs going round Rheumatology! Anyway, back to you, so they didn't do a SLEDAI? Or did they suggest you do? If they did, was it positive? So sorry to hear about your nose. Can I ask, do you have a constantly runny nose? Especially when stressed (but generally all the time) I have a runny nose. My mum had this too all he life, along with a lot of my other symptoms. As I'm sure are you, we were an extremely healthy living family (although I do have a glass or two of red now and then ;) so I can't think what its about. Before I was on the Methotrexate (4.5mths now) I'd have moderately bad nose bleeds every couple of months for a week or so too. That was nice! Generally whilst getting ready for bed... when my other symptoms get worse too ie rashes on face, swollen red hands and pain. Do you have nose bleeds too? thanks eekt!

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Oh my, thanks for sharing. Sorry you suffered so much before diagnosis but glad they got there in the end! I had years of going to GPS with random manifestations but it was the exhaustion that was flooring me - I had a mild flare that lasted years, just swollen glands, the rash coming and going, low-grade fever, inflammed gut and pseudo-constipation, dry eyes, constant rhinitis and sinusitis, infections going wild, broken body thermostat, plus the old nose slowly collapsing. No SLEDAI ever mentioned or family history taken (one in two of my extended family has an auto-immune disease - it's part genetic, hormones are involved, and there's an environmental trigger...a glass of red reduces the CVD risk!). The nose bleeds sound horrendous. I only have pus (sorry!) varying between liquid and solid, mostly on one side...sometimes I sneeze and it comes out my mouth (DISGUSTING!!!!)...sorry about that. You've got to laugh! Hope the Methotrexate is going well. Stay happy xxx

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Haha... love the broken body thermostat comment - I've always said 'my thermostat doesn't work"!!! For decades! Thanks for responding eekt - all the best x

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So glad I'm not alone with it...and I'm not as mad as my GPs thought!! Wishing you well xxx

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Ah bless you.

I feel surprisingly calm but I think it’s because I pretty much thought they’d say it was lupus . It’s almost a relief to know what’s going on after all of the investigations I’ve had.

The flares are tougher and lasting longer now so will be good to start some treatment.

So glad that I joined this group - you’ve all been so supportive . Take care xx

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