Diagnosis at last today

Well it's official, I have lupus. She looked at my history and previous medical tests taken earlier this year.

Had a steroid injection in my butt cheek (ouch), and got prescribed hydroxychloroquine sulphate tablets, but I can't start taking those til eye consultant sees me in October and gives the go ahead.

Had bloods taken ( filled 9 bottles for testing ).

How do I feel ? I'm unsure, feel a bit numb and overwhelmed. But at least now I don't feel like a fraud or a hypochondriac.

I'm a bit nervous about discussing this with my managers at work and my colleagues ( if I choose to ). Because I still look like Rachel, it's hard for them to understand.

13 Replies

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  • Hi Rach5,

    Although it is good news that you now have a diagnosis, i can understand at the same time how daunting it must be for you.

    If you would like information or advice on how to tell your employers and work colleagues, we have a free guide available called 'When an Employee has Lupus' which you may find helpful. It is available to download or i can happily post one out to you. To download the guide just go to - lupusuk.org.uk/publications/

    However, if you would like one sent to you in the post, just send me an email with your name and address along with anything thing you may need. hayley@lupusuk.org.uk

    Best wishes,

    Hayley

    LUPUS UK

  • Hi Rach5,

    I am in a similar position to you. Diagnosed 3 weeks ago with SLE and I have started on the same tablets and I feel so much better on them so far (fingers crossed). Currently I have very little joint pain or swelling and I feel so much more hopeful since taking the medication. Like you I am also concerned about telling my employers but I think I will once I am back in work (probably next week).

    Wishing you well and let us know how you get along. It's good to talk.

    Tripitaka X

  • Have you had any sideeffects yet from medication?

  • No side effects as such (crossed fingers) and I have been taking them for 3 weeks. I feel so much better, still tired but very little joint pain and swelling. My Rheumy didn't advise me to check eyes before taking meds, however I have my eyes checked by my opticians every year. It is all a worry this LUPUS but life is unpredictable anyway. I am still really upset but at the moment I feel so much better. I hope you do too xx

  • It would be a good idea to get your eyes checked ASAP Tripitaka - your GP can do a basic test. This sets the score sheet for you just in case anything changes with your eyesight I was told. Good luck to both of you.

  • It all feels so overwhelming still, just woken up 6am, barely slept last night. Hopefully in time we will get our minds round it.

  • Hi Rach

    So pleased to read you've been diagnosed with Lupus and you've started on treatment. The steroid injection should start to kick in now and make you feel better. It must be a big shock for you so give yourself time to process it all. It will feel better given time, it's like a bereavement process. The relief stage will come that as you say your not a Hypochrondriac!. Lots of TLC and good luck for your blood results and eye check before starting Hydroxy. Did the Consultant say when she'd see you again?. Keep us posted. X

  • I see the eye consultant 13 October , I see the rheumatologist again 15 January, unless there's an issue with my bloods

  • Hi Rach

    Good luck for those appointments, it's good your being well monitored. X

  • Hi Rach

    I was diagnosed 4 years ago, I told my employer straight away & they have been incredibly supportive from day 1. It gets easier, and people do start to understand, I used to get a lot of "well you don't look ill" but that has stopped now and to be honest they can usually tell when I'm not so good without me saying.

    Good luck, it's very daunting at first but you will find your own way to deal with it, I now inject methotrexate and I have found (after a lot of messing around with food) diet does help .... Early days for you with all that though. X

  • Thankyou

  • It must be such a relief to be given a diagnosis. I haven't had a diagnosis as my bloods keep coming back negative. My rheumatologist believes I have seronegative lupus but hasn't officially diagnosed it. I was started on Hydroxychloroquine in April 2015 - two for two days, one for one day on a repeating cycle. Had to get my eyes tested before I started taking them and now once a year. I did get side effects originally when the pharmacy gave me the QUINORIC brand. Acid and nausea. My GP changed my prescription so I have to be given ZENTIVA. No problems since so if you do get any side effects check which brand you have been given and ask your doctor to specify a brand on your prescription. If no brand is named on your prescription then the pharmacy can dispense any.

  • Congratulations on having a diagnosis! Now you know what to do to feel better :) educate yourself as much as you can and pay attention to your body, learn your limits, sleep well... i think is best when you love and respect yourself. Good journey!

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