SLE (maybe.....)

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Hi everyone, I'm new to this site and hope someone can offer me advice as very confused right now...

I am 30 years old. I went to my GP as, since having my son (14 months ago), I have been suffering with joint pain (mainly in wrists, hands and ankles) and intermittent pain in lower legs. I have also lost far too much weight without trying.. The doctor said I was looking flushed and said the redness in my face looked similar to the butterfly lupus rash.

So, I had some bloodwork done and my ANA has come back 'weak' positive. Apparently even with all the symptoms I have and the positive blood result, it still doesn't confirm a diagnosis.... My GP is referring me to a rheumatologist for another opinion.

Since this has come to light, I have also noticed that my hair is thinning rapidly and I now have what looks like a receding hairline sad My mum also reminded me today that when I was 14 I went to the GP complaining of pain in my knees which he put down to 'growing pains'... so, this could have been underlying for years ?? So many things are spinning around my mind at the moment sad

I have seen from other people's posts that it can take years to get a proper diagnosis but I am really scared already and don't think I could take any more waiting!

My family are also worried obviously but I don't know what to tell them as I don't have any answers either. I expect a lot of you have heard all this before but I just wanted to speak to someone who understands the frustration... I don't know anyone with SLE so don't really know what to expect. Thank you for reading this, I hope someone can relate, offer advice on how to cope with not knowing... Karen xx

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  • Posted

    Hi I don't have SLE but I have friends that have. I noticed no one had answered your post and know how dispiriting that can be.

    It's good that you are being referred to a Rheumatologist, I hope your appointment comes through soon. You can be reassured that you will have the full battery of tests once you get there and then you will know one way or the other what the results are.

    I also have arthritis and had Still's disease as a small child. I am now a granny and so is my friend. We both had two children and although life can be a bit more of a challenge we have managed really well. Both helping out at Brownies and Sea Cadets and living life to the full, even though we are both beset with extra tiredness and mobility problems.

    Please try not to be scared, whatever the diagnosis you will get appropriate help. You may just have a slight inflammatory tendency rather than a full condition.

    I belong to ARC (Arthritis and Rheumatism Council) and also a website called Arthritis Care. Just put in Arthritis Care forum and it will pop up. There are several catagories and lots of help and advice from people who know how you are feeling. You can ask anything and someone will answer, I promise. Like here we all have user names.

    I'm sure your family will be supportive whether you have SLE or something else.

    Let us know how you are doing and what your diagnosis is. Take care of yourself , good luck, Fanny Jane.

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  • Posted

    Hi Fanny Jane,

    Thank you for your reply. I will have a look at the website you suggested.

    I'm not feeling too scared now, just looking forward to an actual diagnosis so I can be treated accordingly. I appreciate that you took the time to read and type such a positive account. It's very encouraging smile

    Hope to get some answers soon.


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  • Posted

    Thank you Karen, very best of luck when you go to your appointment. Fanny Jane.
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  • Posted

    I have had lupus for about eleven years. I also have an overlap with RA. Mine affects my joints and skin. I also have positive ANAs.

    I was told that there are eleven symptoms for lupus, and if you have at least four of them, you are classed as having lupus.

    Lupus can be mild as it is in my case, so try not to worry too much. Although it can be painful, you can live with it.

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  • Posted

    Hi. I have been diagnosed with mild lupus 2 months ago at 55 and am on hydroxychloroquine for 4 weeks, been told it takes 6 weeks to take effect. Experiencing bad RSI in my right wrist when i type at the moment, is this part of the condition or could it be another problem entirely. Would love to hear from anyone with advice and experiences of hydroxychloroquine and other mild sufferers.
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  • Posted

    Hey kterry82,

    I am so sorry to hear about your pain. My daughter has Graves disease (hyperthyroid) and her ANA levels have been elevating. She has had swelling of her foot and leg for 4 months now and she is in a lot of pain and is a dancersad She is 15 years old. You may want to have your Thyroid checked as well if you haven't already. Sometimes one autoimmune disease leads to another. I am now seeing a rheumatoid doctor and we shall see. I hope you feel better and get results

    Take care and be well Kate

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