Now diagnosed with SLE (systemic lupus) & mixed connective tissue disease

Last time I wrote a blog post back in March I was waiting for my 1st appointment at The Royal Free. At that time my main concern was my Raynaud's which had turned my life upside down as it was so severe and prevented me from doing so many things I had just taken for granted. I didn't understand that the 'system' for the Raynaud's clinic is that you are assessed by a nurse specialist and have capillary tests and lots of blood tests. They then assess your results and either see you again in the Raynaud's clinic or refer you on to another team or back to your GP. I had expected to see a Rheumatologist. So whilst the nurse specialist was very good and thorough, of course they were viewing me in the context of Raynaud's and Scleroderma etc as that is what they specialise in but by this time it was obvious to me and my GP from my ever increasing symptoms that something more was going on.

The blood tests results along with my symptoms confirmed that I fell into the spectrum of SLE & Mixed Connective Tissue disease so the Royal Free said they would refer me to another team (autoimmune unit I think on 2nd floor?) but meanwhile I was so ill with new symptoms appearing every few days the worst of which were my elbow and jaw swelling up so I couldn't use my right arm and could hardly open my mouth, the absolutely overwhelming fatigue and depression and terrible skin rashes etc that I was desperate to get some treatment rather than continue to wait another 3 months for my next hospital appointment. I paid to see a local Rheumatologist privately who I knew had an interest in connective tissue diseases. Best money I ever spent.

He confirmed the diagnosis of SLE with Mixed Connective tissue disease as likely, put me on steroids immediately (I have to have my eye health checked this week before I can start on Plaquenil as one of my symptoms is periods of blurred vision) and arranged for further blood tests for Hughes Syndrome & complement levels with my GP. He also asked my GP for an urgent referral to him in his NHS clinic within the next 3 weeks so I can have all my tests and treatment through the NHS.

What I have learnt from all this is that if you have Raynaud's combined with other symptoms, keep talking to your GP and ask them what they think is going on as you may have secondary Raynaud's so you need to make sure you get all the necessary blood tests and personally I would get a referral to a Rheumatologist in the first instance who you know has an interest in connective tissue diseases.

I am devastated at my diagnosis but now I know what I'm fighting and can make informed choices about my treatment. Good luck to anyone else still waiting for a diagnosis.

7 Replies

  • Hi, glad to hear you have a diagnosis as it is generally easier to manage something when you know what it is. It seems many auto-immune illnesses run alongside one another. I myself have HMS/EDSH along with Aspergers & am currently undergoing tests for secondary Raynauds. It is a long daunting process having to visit so many specialists (you feel like you are handing over so many pints of blood at times) but the end results make it worth while.

  • Good for you. Now you know what you are doing. Good luck and thank you for your message.

  • Its obviously good news in that now you have been diagnosed you can now receive treatment.

    There is however another side. Once you are diagnosed insurances and loans may be more difficult or more expensive to get. Also if still of working age, it can thrown up work issues or present barriers to new work if questions are specifically asked on application forms.

    Anyone pushing for diagnosis needs to take all things into account.

  • I have had Mixed Connective Tissue Disorder and Raynauds for some years now- I find Plaquenil has really worked for me so hope it is helpful for you as well

  • I do understand your fears I myself have had raynauds for about 17 years but this year I developed more symptoms, terrible fatigue and felt very isolated and hysterical quite frankly. I was told I have sjogrens syndrome and overlap connective tissue disease. I do wish you all best and thank goodness you are having some treatment. I feel a bit calmer and I do believe this website is brilliant where you get lots of support and good advice this has definitely helped me. Hope you don't feel as if you are alone . Good luck.

  • I am so sorry this is happening to you. I can relate.My first diagnosis was SLE (lupus). That was followed by raynauds, sjogrens, fibromyalgia, scleraderma and now Graves (autoimmune disorder that attacks the thyroid gland. I try not to dwell on the illnesses but that is quite hard sometimes. We live with daily struggles that affect not only our lives but the lives of our family and friends. I am still able to work but only because I have a boss that will accomodate me in any way just to keep me from quitting. I actually have a sofa in my office so I can rest when the fatigue envelopes me or the pain is terrible, Gentle hugs to you!

  • Why can't all employers be like yours. You're very lucky :) I've lost jobs because of employers lack of understanding of our condition. Our brains still work but because Ray is not classed as a disability we get no allowances.

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