How do you categorise Lupus?

Going through OH assessments as I am off long term sick and they seem to want to label my Lupus as mild/moderate/severe. My GP has said it is severe. As far as I am concerned I have CNS Lupus full stop and I have never thought to categorise it. I am on Mycophenalate, Hydroxychloroquine, Gabapentin and Prednisolone. I considor people who are hospitalised (not me) as severe. Any thoughts?

10 Replies

  • Hi dalediva, I asked a similar Q not long ago. An awful lot of members have had their lupus described as mild, even though some of us have internal organs affected. I asked the Q, has anyone been told their lupus is severe. From memory, I think only one person said they had been told it was severe. Members often start a post with, " I have mild lupus". That's what made me ask the Q. There are a lot of new members lately, perhaps they will be more helpful.

  • Severe SLE is when lupus has damaged or destroyed an organ (e.g. Severe kidney disease, severe damage to pancreas, lungs, heart) or when the effect on the body is life threatening (e.g. major blood disorders, neuropsychiatric symptoms/psychosis, etc).

    I'm not sure whether the categorisation is applied to the continuous state or the flare state, or both. I would say that as long as your CNS lupus is controlled through medication the category would be moderate but it could be severe if your symptoms worsen.

    I would agree with your GP here and go for severe to be sure you get all the necessary support when things go wacky.

  • I was told I had moderate/severe lupus as I have had a massive blood clot to my lung and the doctors found a hole in the tricuspid valve of my heart. The lupus quite often attacks my heart and have been in hospital a lot due to my problems with the lupus attacking my heart. I seem to be susceptible to pleurisy and pericarditis. The doctors have told me that I will need an operation on my heart to replace my valve at some point as it will begin to fail, but at the moment it is doing ok. Currently I am not working and don't know if I will ever be able to go back to work as I tire so easily due to both symptoms and medications. I am not claiming benefits either but I think I should. My meds are only plaquenil, methotextrate and warfarin.

  • Hi MCJM - just reading your post and feel that you should apply for benefits, it would seem you're unable to work due to being so ill and there are millions of unclaimed benefits every year. I hope this is not because of stigma etc - I would say you are entitled to benefits if you are too ill to work so please apply ASAP and have your GP/Rheumy support you in this.

  • I suppose it is because of stigma and denial. I was only recently diagnosed (a year ago) and really hate the fact that I may not work for a long time, if ever. All I have ever known is studying and working, I was previously a teacher and then a carer. I have dreams of being a foster mum and feel that if I claim benefits then I am giving up on myself and my dreams. I did recently appeal my DLA for when I had my Pulmonary embolism and won a years award. Just the thought of going through all that again fills me with dread, it was so awful, I was made to feel a liar and a fake, when quite obviously I wasn't and received high rate mobility and low rate care. When I asked my Rhemy to support me in my application all she could say was that she would verify that I have LUPUS. I will apply for the new system , PIP, just building up to get the strength to do it. Thank you for your support Slowmo.

  • Hi again MCJM, I totally understand - I was a probation officer until last year when I took 'ill health retirement' and know how awful it is to go through the application process for benefits - you are entitled and you are deserving. Your consultant doesn't sound too helpful though - I think Paul or Hayley on here can always send you info re this subject and there is information on here re applying etc.

    All the best and good luck take care

  • Hi mcjm,

    Please claim, I suffered for a year being proud and determined not to be labelled a malingerer. You'll have paid into the funds that are there to help when things go wrong. Please get advice and claim. Good Luck. Citizens Advice if you are 55+ AGe Concern xxx

  • Im told mine is severe i have lung/heart damage - scarring etc.

  • When lupus affects the major organs like Central Nervous System (CNS) it is usually considered severe. Your GP is right.

  • Thank you everyone x

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