Is it lupus? : Good morning all I was diagnosed... - LUPUS UK


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Is it lupus?


Good morning all

I was diagnosed with CNS lupus over a year ago. I know lupus can take years to fully diagnose. I have been very lucky and seen highly regarded lupus specialists but....I don't think I have lupus. I have been battling this with myself for a long time.

I know a lot of you amazing people have many diseases /illnesses alongside having lupus, hence why I'm coming to you all for your opinions.

My symptoms are; Positive antinuclear antibodies and chronic pain down the right side of my body. The pain gets worse with prolonged physical activity. I show no sign of muscle weakness. My symptoms have never changed. Not got worse and not got better in 1.5 years. I have had 3 MRI's on head and spine and nothing has shown up. I have been on very strong pain meds for a long time. I'm also back on steroids as my doctor has put me on immunosuppresents 2 months ago as nothing was taking the pain away. I have been feeling great the last couple of months but I'm under no illusion that thus feeling could be the steroids.

I'm hoping to start to come off all my pain meds to see if the immunosuppresents are actually working.

If they don't work and my pain is still there then does that mean I don't have lupus? If so what on earth could be wrong with me? I'm working full time and want to continue but my employer will want to see any indications of improvement.

If I'm in denial over lupus then please tell me. I want people's honesty.

9 Replies

Hello ange726,

Sounds like a familiar story - so many of us with these complex and poorly understood conditions have to become our own lead clinicians. But given that you state that you have been positively diagnosed by well-regarded specialists, why do you think you don't have lupus?

There might well be other investigations that would be helpful, but I doubt that removing pain meds would tell you much about the likely diagnosis. There are just too many variables here.

Without more info, my suggestion would be to formulate some specific questions for your clinicians - tell them why you doubt the diagnosis and how they would account for the specific symptoms or features of the problems that you have. x

ange726 in reply to whisperit

Hi whisperit. Many thanks for your reply. If I was completely honest, I was such a sporty active person, I was convinced it was an injury. I realise its not now and just finding it hard to accept I have lupus. Not told many people at work and only close friends and family.

The diagnosis I have been given is SLE, probably neurological lupus with hemidynia, possible high chord lesion, possible ANA, u1 RNP and Sm positive. I am back seeing one of my consultants next Friday so will ask him to break things down for me. I'm booked in for a 3 week rehab course to kick start my fitness again which I'm excited to do and they are going to start taking me off my prednisone and tapentadol.

I'm in the military and love it and I'm determined to stay in so in order for me to do my job I have to try and come off (supervised) steroids for the obvious reasons but also tapentadol as its such a strong opiate and addictive. I'm hoping my mycophenolate does the job instead.

I'm taking your advice and making a list of questions to ask my consultant next week


whisperit in reply to ange726

Hope it goes well. Do let us know how you are getting on x


A very helpful post.

Ange, I'm curious on what basis these specialists concluded that you have CNS SLE if you don't mind me asking this?

They must have drawn more blood for other tests, not just ANA. Did you have anything else positive/abnormal/too low or too high etc other than ANA?

It's wise not to believe everything "experts" would say. As the previous poster pointed out, you probably know more if it is SLE or something else.

ange726 in reply to Hidden

Hi anothermember.

The diagnosis I have been given is SLE, probably neurological lupus with hemidynia, possible high chord lesion, possible ANA, u1 RNP and Sm positive. Not sure what all of it means but credit to my 2 consultants I see, they are super helpful and always explain things (professor D'Cruz is one of them. Due to my meds, I have the worst memory in the world so forget what they say. I think I just need to sit with my consultant when I see him next week and ask him to break down everything.

Thank for taking the time to reply.

Hidden in reply to ange726

Wishing you all the very best. Thank you for sharing.


Hi ange726,

Is there any reason in particular that you suspect you don't have lupus? Do you have any thoughts about what else could be causing your symptoms.

If you've only been on the immunosuppressants for about two months then it is probably not enough time to tell whether they are working or not. They usually take at least three months to kick-in and may take longer to reach their full effectiveness.

If your current treatment isn't working, that doesn't necessarily mean that your symptoms aren't caused by lupus. Unfortunately lupus is a very difficult condition to treat and not everyone responds well to each treatment. At the moment it is still a bit of trial-and-error to find the correct treatment regimen for each person.

ange726 in reply to Paul_Howard

Hi Paul.

Thank you so much for replying. After having a long talk with myself and reading the replies people have written I think I'm in denial as I have had 3 medical opinions all agreeing with my diagnosis. I haven't told many people because I think if I do, then I have given in to saying I have a chronic illness. Does that make sense? As I have mentioned above I'm in the military and trying my best to stay in but I'm really scared that it may not be possible. So currently trying to live my life as normal as possible but finding tough at times.

Ill keep plodding along and when I see my consultant next week ill have a list of questions.

Paul_HowardAdministrator in reply to ange726

Good luck with the consultant next week. Let us know how you get on.

I can understand your ambition to continue as much as normal, but if you have a superior who can be aware of your diagnosis and how they may be able to assist if you are struggling then it may be better in the long run. It is best to have support in place before you need it, rather than let things potentially deteriorate because it is not there.

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