Newly diagnosed!!

Hi ..... after being treated for Rhuematoid arthritis for 2 and a half years.... I was given the diagnosis of SLE 6 weeks ago .... BY POST!!! Good job i can use a computer and was able to google it as I didnt have a clue before. I dread to think what would have happened if i had been elderly or was unable to get the inforamtion for myself esp as it was over the new year period!!! The consultant really didnt care to be honest ... not impressed!!!! THANKFULLY my GP has been brill and am now on steroids and hydroxy .These have really helped my physical symtoms but am really struggling with the fatigue esp as a single mum..., Any advice for me would be great!! Sorry it's a bit of a rant for my first post!!! Thanks

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  • I was treated for unconfirmed ra for twenty odd years before i had major flare last summer with sore joints and other symptoms and was diagnosed with sle. Luckily I was told by consultants who have been great as has my own gps and was put on various meds including steroids and immunesuppresents. As of beginning of the year started hydroxy too but not liking it so waiting to hear if I can come off it.

    It's really scary as lupus is not a well known illness and because we usually look well people don't take it seriously.

    The best advice I was given was to learn as much about sle as possible so you are prepared to fight it. You need to learn to pace yourself. As you know the fatigue is a major problem. Sometimes its a struggle to get out of bed but the days you do feel ok don't overdo it as you're then bound to feel worse the next couple of days. I found it hard to learn to accept the limitations sle has put on my life but with support from family and friends i'm getting there. Try and stay as positive as you can ... This makes a huge difference in recovery.

    This site is great for support as is a group on Facebook called lupus is real. Have a look for it. It's a closed site so you can post what you want and it stays within the group. Its been a godsend to me and all the lupies are fab.

    Hope this helps a wee bit.

    Take care and keep smiling

    Sharon x

  • All i can say Take the advice that Sharon has given

    Love & Sunshine

    Jan x

  • That is a terrible way to receive a serious diagnosis!! Maybe your GP can get you to see a different consultant next time. At my surgery, the GPs don't really deal with lupus treatment, although they are very supportive. I would just re-iterate what's been said previously - do join Lupus UK, get their DVD and go to a regional meeting if you can -it's helpful to meet other patients. Join a facebook group and read everything you can, but bear in mind that treatments are improving so don't read anything that's old and out-of-date. The Graham Hughes book (Patients Guide to Lupus) which is available via from Lupus UK (or probably from your library) is a really good introductory read. I'm still struggling with the fatigue, but try to get a regular rest time every day. Hope that helps! xx

  • Hi Clairektng,

    I'm very sorry to hear that you had to receive the news like that. We have many resources available for you. I'd begin by suggesting you order one of our DVDs for the newly diagnosed. It is great for explaining important ways to manage your lupus and it can help friends and family understand too. They are free, except we ask for £2 postage and packing. You can order one from here - bit.ly/ybUOXf

    You might also like to join LUPUS UK. By joining you will receive our magazine full of lupus news and advice 3 times a year. You will receive a welcome pack and will automatically join one of our regional lupus groups, where you can meet other people with lupus for advice, support and friendship. You can join here - bit.ly/mrDyQu

    If there is anything you need or would like to know, we're here for you.

    Paul

    LUPUS UK

  • Thanks everyone!!! Have joined both the Facebook group and Lupus Uk ..... xx

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