Lupus coagulant? Prednisolone? Confused and let down?

Ive just been to hospital as my husband had to call ambulance I was in so much pain I was having severe thought of suicide, not surprising when I've suffered like this over 12 years! I've been on codeine sulphate Amitriptyline and gabapentine for a while now,been to see Rhuemy at NNUH once and had negative lupus but positive lupus coagulant? I have no idea what this is? I have appointment to return dec but I'm the meantime I've had a real bad flare in my leg resulting in a hospital day trip! They gave me gas and air, did nothing,they gave me morphine did nothing , they gave me prednisolone ..... Feel like someone made a magic potion!! It worked ... Two days later I'm here not in constant pain! Is this what I should be taking? Why have I been suffering all these years when there is a drug I could have had before to help me? None of this health service makes sense? Am I right in thinking the Rhuemy dept at st Thomas is closed? Can this seriously all be about money? Why do I feel like no one wants to help?

8 Replies

  • The Louise Coote lupus clinic at St Thomas' hospital isn't closed.

  • I spoke to the lupus staff and they confirmed they are not closing but moving to St Guys next year.

  • Thats the way prednisolone works for me when all is going ape. As you say it acts just like a painkiller for us.

    I feel so let down right now. When I got sick I really feared entering the health system as I had long term memories of my mother being left on trolley unattended in serious pain when she was dying with cancer. But when my time came I experienced the best care and couldnt believe that the dark old days existed. But in the last few years I have seen a marked change and we are indeed heading back that way.

    I have realised that the term 'choice' is just window dressing when you are ill unless you have available funds to bypass the system.

    Really peeved with what is happening these days.

  • Thank goodness the clinic isn't closing!

    I would appreciate any help with the problem I'm having re diagnosis and what anticoagulant lupus means, I have the most serious joint pain imaginable at times and never know when it's coming I'm scared to hell when it's going to flare up again!

  • Lupus anticoagulant, despite its name, is not used as a lupus biomarker (i.e. its presence doesn't automatically mean that you've got lupus). It may appear positive in lupus sufferers but it usually indicates coagulation issues, i.e. a risk of forming blood clots. You will probably be checked now for Hughes' syndrome too (or 'sticky' blood, or increased likelihood of blood clots). If there are no symptoms, it is unlikely they'll give you a treatment but will monitor you. If a clot appears or has appeared before, you might be put on blood thinners (e.g. warfarin).

    I'm not sure that the joint pain is resulting from this, though. The fact that the prednisolone worked like magic does indicate inflammation, usually going hand in hand with an autoimmune connective tissue disease (e.g. lupus).

    Try not to panic - once all the results are received, you'll be assessed together with the rest of the symptoms and hopefully a diagnosis will be swiftly reached and a treatment started.

  • Thank you for your reply so appreciative .

  • I completely agree! I have tried so many differnt meds, only thing that helps is pregnizone. & a vegan diet !! I rather have preg than any pain med

    David J

  • Please be careful with the Predinsone. This drug does help inflamation and therefore pain but gives you a false sense of well being. Long term use is bad !! I feel the side effects are bad enough to out weigh any benefit (and that is short term) for its use. Just wish more research could be done.

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