On Friday 6th October 2017, during Lupus Awareness Month, the British Society for Rheumatology (BSR) has published the first UK guideline on the care of adults with systemic lupus erythematosus (lupus). The clinical guideline is accredited by the National Institute for Health and Care Excellence (NICE).
You can read more about this and access the guideline via the LUPUS UK website below;
Paul do you think lupus will ever be officially recognised as a disability?
Hi steve61 ,
Lupus is covered by the Equality Act 2010 and therefore it is illegal for anyone to be treated unfairly as a result of their lupus.
Regarding recognising it officially as a disability is a tricky matter because lupus is such a varied condition which presents differently in everyone. The definition of a disability in UK law is currently, "A physical or mental impairment that has a substantial and long term adverse affect on the ability to carry out normal day to day activities. "
For those with relatively mild lupus who respond very well to treatment and can control it effectively, they may not meet the current criteria for having a disability a lot of the time. We know of people with lupus who manage very well and even run marathons regularly.
Certainly there are many people with lupus who may be considered 'disabled' and may be eligible for additional adjustments in their workplace/home and perhaps for disability benefits.
Thankyou for making this available to read. A doctor friend had sent me the link yesterday but because I wasn't a doctor I couldn't download it.
Reassured to read that my 18yr old Caucasian son (so rare!) with severe lupus /LN is being put on the most up to date line of drugs. He was diagnosed 27th Sept this year. It makes for scary reading too when you read about morbidity etc but I feel I need to read it to be aware of risks. Also drug toxicity. It's not easy reading as a mother and nurse but it's amazing that there is such a clear guideline for healthcare professionals even down to how often you get followup and what tests to do regularly. And that dipping a urine in a GPs isn't enough it has to be a proper protein creatinine ratio.
I am lucky in that my son has a renal consultant who will follow this by the book and will contact lupus specialists if in doubt.
It may well be that if peope feel unsupported or unsure about their treatment, that they ask their specialist, in line with this new guideline, where they fit into it and are they on the recommended treatment??
I hope people find that this publication helps.
Best wishes
Dee, Scottish Highlands
Hi Deegraham ,
I am very pleased to hear that your son has an excellent consultant who is caring for him well.
We would certainly encourage patients to check with their consultants whether they are aware of the recommendations in the new guideline. If someone feels that their care isn't of a suitable standard then we would encourage them to ask the question and push for the care that they deserve.
Thanks Paul. Lets hope this goes some way to continuity of care or at least diagnosis.
Thank you for posting this Paul. Are there any guidelines on the definition of 'in remission'? My own sero neg disease follows a very labile relapsing/remitting pattern and flares are triggered easily. I wonder how long I would need to go without a flare to be considered 'in remission'?
Hi Fennella02 ,
I'm not aware of any formal medical definition for lupus remission, and if you look on the Lupus Foundation of America's website they claim that there isn't one. resources.lupus.org/entry/r...
Essentially “remission” is used to describe particular circumstances. One example of this could be a person who presenting with a systemic disorder such as lupus, but after a while their symptoms and blood test results all go back to normal and stay that way, even when any treatments are stopped. In a case like this some doctors might feel that the person did not truly have lupus, but probably had something presenting in a similar way.
The more common usage of the term remission would be to be "clinically quiescent". This means that the person with lupus is doing well with no evidence of lupus symptoms such as arthritis, rash, kidney involvement etc. although they may still be on treatment such as hydroxychloroquine.
Thanks for sharing this, it is very interesting.
Considering I am on Hydroxychloroquine 2 x 200mg, MMF 3g a day and Mepacrine, 50mg 3 times per week - it would indicate that my lupus is probably considered moderate? I would say that my current disease activity is low or in remission due to meds, therefore I should be monitored by Rheumatology 6-12 monthly, according to this? I saw a new Rheumatologist in September and she has written in her follow up letter that she doesn't want me to see me again, as no evidence of systemic disease and I am to be reviewed by Dermatology Department alone. Dermatology never do any bloods or urine tests etc. I am concerned by this.
Is this normal?
Thanks
Wendy
Hi Wendy39 ,
As I am not medically trained I cannot really advise you about this, although I would say that anyone with a form of lupus should continue to be monitored (although frequency will vary), it just depends who is the lead consultant who will be doing this monitoring - which will be based on presentation of symptoms.
Oh yes and I am guessing that as it is a Guideline, it cannot be enforced?
Whilst it may not necessarily be 'enforced', this guideline gives an example of best practice based on current evidence. If someone feels that they are not receiving care equivalent to the standards set out in the guideline then they may wish to discuss it with their healthcare team to understand why that may be the case and to address it if possible.
Thanks Paul. Something to consider. I might write to Rheumatology and question their decision.
Wendy
Good point.
Ooooh heck, mean average morality age is 53 and 7 months. Guess how old I am! 😐
It’s ok I’m 64 and have had Lupus for over 25 years. So there’s hope for everyone XX 😘
Why not join Lupus UK for £10
