May have Lupus??

Not sure if this is the right place to write this or not. Just been told I might have Lupus, which I'm told is a connectivity tissue condition. I know nothing about Lupus at all and I'm scared, there is so much about it on the web just not sure where to go for the best advice. My rheumatologist has prescribed diclofenac slow release twice a day she has suggested I take the second dose just before I go to bed so that it may help me in the mornings to get moving a bit easier. She is also doing more blood tests to rule out other rheumatological problems and help her diagnose my problem.

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  • lupus.org.uk ( St Thomas Lupus Trust) is a great source of information and support, as is Lupus Uk. It is an autoimmune condition. I know its scary but try not to worry yourself. Take each day as it comes, see what the blood tests come out with. Some people get Lupus mildly and others get more severe problems with it, so don't scare yourself when you read about it as it may be that certain aspects will never affect you.

    Good luck with it all, I hope this is of some help to you xxx

  • link for the charity Lupus UK lupusuk.org.uk/

  • Hi rainbow3

    There is so much info out there on the internet about lupus, & some of it can be quite scary. But stick to the sites mentioned above & you will get lots of useful, positive info.

    Lupus UK do a video for the newly diagnosed, which I found very helpful. You can also give this to friends & family to watch. You could contact lupus UK head office, or your local support group for a copy. If you have a support group near you, you will be made very welcome & get lots of good advice from them. You don't need to be a member, or actually diagnosed to go along.

    I also found 'The Spoon Theory' is also a good way of explaining to others what you are going through. The video is better than the written version, as the authors personality comes across more. You can look at the by Googling 'The Spoon Theory' or got to the 'But You Don't Look Sick' website.

    All the very best with your up coming appointment. You should know more then, & start to be able to get your head around your diagnosis. X

  • Thankyou for your comments I have just read the spoon theory and going to access the web site suggested.

  • Hi rainbow3, I am sorry to hear you may have lupus! When I was first told, I had never heard about it and was really pleased that they had found out what was wrong with me! When the doctor told me, I said thats fantastic! he went quiet, so I realised it may not be so good!! But, at least now I am having some treatment and I am usually a positive person and although still crappy, the medication does help :) This is such a valuable site, I also belong to a lupus group, which is invaluable to me, just be careful with some groups as they are not always what they seem, wishing you lots of luck, and lots of good days :)

  • I hadnt heard of it either when I was diagnosed in 2005 and my condition is mild. The meds I take have helped, just 2 plaquenil each day so dont worry and dont take on board everything you read, listen to your doctors :)

  • If you'd like one of our information packs, please send me a private message or email paul@lupusuk.org.uk with your address.

    It contains suitable information for somebody approaching diagnosis or those that have recently been diagnosed. I'd advise you not to read too much online because there is a lot of outdated and incorrect information. You also don't get a good representation of the condition....generally you hear about the more severe cases.

    If you need anything, don't hesitate to get in touch.

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