Help please!

Hi, new to the site and would appreciate any information you can give me.

I was diagnosed SLE in November 2011 after having a bad year and positive dsDNA, ANA and high Plasma Viscosity blood results amongst others. Have had a number of vasculitis attacks on my legs over the past two and a half years, one of which was particularly bad. This involved a purple rash from my waist to my toes and affected my eyes which were very red and sore and had to be bathed open as the lids had stuck together. My GP wrote to the Rheumatologist and asked could steroids be prescribed for short term use when I had vasculitis, which was refused. I am on no treatment.

At that time I lived in a different area and I now have a new Rheumatologist. From what he says I gather that he doesn't think I have SLE because I don't have organ involvement and my bloods were fine when he checked them.

I have had 15 previous years of problems, a positive SLE diagnosis, positive bloods, many other symptoms of fatigue, joint pain, mouth ulcers, arthritis etc., (which I am still having), and was of the understanding that that was enough for a diagnosis, am I wrong? Previous Consultant was satisfied.

Hope someone out there can shed some light on this for me.

16 Replies

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  • Hi Lorac

    What a nightmare for you thanks to having a new Rheumatologist!. I would have thought those test results were enough for a Lupus diagnosis as some are more specific. I can only suggest that maybe the figures are a low positive and this Rheumy is doubtful , your previous Rheumy happy. It is down to how these tests are interpreted by the doctors!. You can do without this added stress when your obviously ill. Could you see another Rheumy at the same hospital?. What does your GP think?. I hope I've helped?.X

  • Hi Misty

    Bloods taken here for the first time were clear and as far as I am aware he doesn't know what the results were when they were positive nearly three years ago in my old area. It looks like I am having to go through the process all over again, which I find very distressing.

    He took loads more bloods when I was there last and have an appointment in December, hopefully I will have answers then.

    Many thanks for your help

  • Hi Lorac

    To suddenly have clear bloods after those positive ones does explain your new Rheumy's attitude but so hard for you to cope with. It's good he's taken bloods himself . Something for you to think about. I recently changed Rheumatologists and was able to get a copy of my previous hospital notes to my new Rheumy. It takes a while but can be done liasing with the secretaries. Could be good for your December Appt?. If you suddenly become very unwell you could always try to bring your appt forward via a cancellation if you ring the clinic. I do understand how you feel as my New Rheumy has a different attitude to my previous ones re diagnosis and treatment and it's hard adjusting to it!. Take CareX

  • I think he only took the bloods again because I had vasculitis at the time, so waiting for the results at the moment. I have no details for their secretaries but all the info should be on my file at the GP surgery. Maybe they should ask for those? I still don't know much about the protocol as I never saw my old Rheumy from diagnosis in 2011, and had to start again here from the referral stage. so there was 2 years in between. Not had much explained either, as far as I knew it was ok that the bloods were clear when not in a flare. I will learn. Thanks for the advice Misty x

  • Hi Lorac

    It might be worth asking at your GP surgery if you could have a copy of those blood results?. If only to help you know what to ask this different Rheumy!. Glad these new bloods were taken when you'd got Vasculitis symptoms, might reveal something. Sadly for some of us the diagnosis road can be a long and stressful one. Good LuckX

  • Thanks Misty, am making an appointment and will ask for those results.x

  • Hi Lorac

    Good luck for your appointment. Let us know how you get on. X

  • Hi Lorac

    It might be worth asking at your GP surgery if you could have a copy of those blood results?. If only to help you know what to ask this different Rheumy!. Glad these new bloods were taken when you'd got Vasculitis symptoms, might reveal something. Sadly for some of us the diagnosis road can be a long and stressful one. Good LuckX

  • HI - this sounds awful for you. Is this rheumatologist looking for other rheumatic conditions I wonder? I saw a Vasculitis specialist for one off second opinion. He confirmed I have RA and autoimmunity (bloods) but explained that he didn't believe I have Lupus for same reasons as you are getting - lack of organ involvement. He told me that, as I'm now post menopausal and have done my child bearing I would be having problems with my kidneys or lungs by now if this was Lupus - which would also be settling or not getting worse as my symptoms are. He never mentioned Vasculitis but at the time I was still on Methotrexate and Nifedipine so he put the neuropathic symptoms down to secondary Raynaud's and Sjogrens (Sicca).

    Perhaps he is thinking you have Vasculitis instead of Lupus but either way I think you should try and see someone who specialises in this because of your symptoms. As Misty says, something is obviously wrong regardless of your presently clear bloods and they should be going by symptoms and history not by blood results!

  • You don't have to have organ involvement to be diagnosed with Lupus. I was diagnosed with vasculitis in 1998 and then SLE and Sjogrens in 2002. I didn't have organ involvement luckily The Lupus is in remission after 12 years but the SS is still active.

    All your symptoms mouth ulcers etc are classic SLE. You need a second opinion.

  • Thank you evans for your reply. There seems to be a lot of people out there who do not have organ involvement and I am pleased that I am not on my own judging by the feedback I have had. I now feel I can go to my next appointment armed with questions I need answering.

  • Hi Twitchytoes thank you for your reply.

    I know quite a few people with SLE from a support group where I used to live and there was only one of them that I knew of had organ involvement. thank you for confirming what I thought was right. He has said I have skin lupus but won't confirm SLE, which I think is not right as I have had a confirmed diagnosis. But I suppose Misty is right and they all have there own opinions, but it's no fun on the other side as many of us know.

  • Limbo and uncertainty are the worst thing of all I feel. I have a confirmed diagnosis of RA but precious little sign of it! I feel so much more connection with Lupus but this chap was adamant that I couldn't have it at my age (51) without organ involvement despite having had a long history of eczema, alopecia abd more recently dry eyes, folliculitus, hives, nasal sores (painless but bloody!) and peripheral neuropathy. I am also Hypothyroid. He said he could understand why my "constellation of symptoms" had led me to think of Lupus. But felt it couldn't be this but confirmed RA and the autoimmunity and bigged up my allergic disposition re skin.

    Sorry if this is incoherent - thank heavens for spell check! I'm so dizzy now on this Gaberpentin that I can't even get out of bed let alone walk my dogs! X

  • Yes I agree, not knowing is the worst thing. I know that I am one of the luckier ones in that I don't have organ involvement, but that is no consolation on a really bad day when I can't move for hours, my face is like a stop traffic light, and my feet are so swollen I can't get my shoes on!

    Take care. x

  • Sounds like lupus to me. And vasculitis, which is doubly difficult for you. It is shocking that despite your horrific symptoms you are on no medication. I don't know what to suggest other than to go back to your rheumatologist with some materials from lupus uk relating to lupus diagnosis and pushing for an explanation as to the reason for him/her not reaching an SLE diagnosis.

    You must be absolutely fed up - I would be. I would also be livid, though, and that would make me push everyone in the medical profession to get me to reach some kind of relief from symptoms. Because at the end of the day, however we are labeled is less important than having our symptoms taken care of. You could ask your rheumatologist to at least deal with your symptoms, if he/she isn't prepared to diagnose you.

  • I am fed up, I thought after all those years I had an answer to the weird things I was experiencing. Thank you for your advice and I will have all the information and a list of questions ready for my appointment in December. I find GP'S reluctant to prescribe anything and leave it to the Specialists which is probably why I am only on a cream for my face,and Paracetamol for pain, which at times doesn't touch it.

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