New to this forum

Hi

I've been diagnosed with complex autoimmune disease over a year ago, undifferentiated though. Been so poorly. I recently woke up covered in terrible itchy rash! It lasted four weeks- as an emergency I was seen by dermatology and rheumatology. They were shocked at state of skin. They did biopsy. The dermatologist phoned me yesterday- it's definitely lupus, and there's other aspects too! She says 'you're a challenge '

It's been/ still is an awful time. I was off work a year- now, after fighting for my job ( I'm a nurse!) I've returned, but only 2 days a week. I'm on so much medication!! I hate steroids!! Only got married less than a year ago- and I'm a different person, I feel. Anyway, I try to stay positive. Thanks

19 Replies

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  • Welcome Wolf1,

    It's a hard road, and no mistake. I've had to take ill heath retirement from my job as a nurse after being diagnosed with UCTD a year ago. But I hope you will find this forum as supportive and helpful as I have. Do keep us updated with your progress x

  • Thanks. I'm now going down ill health retirement route too! X

  • Hope that goes well for you. I had no trouble getting Tier 2 status - but it's still one of those moments in life when you have to swallow hard and scrap all those plans you had for a comfortable life! x

  • Is teir two when I can still work my 15 hours a week, a d that's topped up with pension? Yes all the plans we had- all scrapped!!! Xx

  • No, under the NHS scheme, tier 2 is when you are deemed unfit for all work, so you get slightly more pension than tier 1 - which is when you are unfit for your current role only. At tier 1 you get only the pension amount that your contribution history entitles you to date, whereas with tier 2, you get that plus 2/3rds of what you might have added if you had continued working till normal retirement age. If, like me, you are near pension age anyway, it doesn't make a huge difference, but if you are younger it can be quite significant. Returning to work on reduced hours is a possible thing, but your ill health pension will be reassessed in either case.

  • Thanks- that makes it clearer. I'm only 47. Xx

  • 👋👋👋👋 glad you've found us, wolf! This is a truly wonderful forum! It has made all the diff to me since my infant onset lupus diagnosis was recovered by a brilliant rheumatologist 6 years ago when I was in my mid 50s. Now am 63 feeling more stamina, resilience & comprehension + less pain, rashes etc than I've had since my teens.

    Wishing you every best wish

    🍀🍀🍀🍀 coco

  • Sounds good!! Xxx

  • Hi Wolf1, welcome to the forum, you will get a lot of help and support here. I too am a nurse and have been put forward for medical retirement after developing lupus in 2014.

    I encourage you to use this site as much as possible as there are so many knowledgeable people giving out great support and help. It's been a lifeline to me.

  • Thank you xx

  • Hiya Wolf1,

    Welcome 🤗 this forum is a lifeline. I'm still being diagnosed but I wouldn't be this far along without the wonderful advice from the amazing people on here.

    I'm sorry that you are having such a tough time but you've found us 😅

    Congratulations on getting married! Don't be so hard on yourself - you're still the same person just poorly!

    Keep in touch

    C xx

  • Welcome wolf! You'll find this forum the very best and most supportive place to be. We all have our own "flavour" of difficulties, but there's always useful advice. I do hope you get some helpful treatment from the medics x

  • Hello Wolf you sound really brave and wow thats the first time I've ever heard about this tier system. I retired from nursing over 20 yrs ago with a back injury only the last few yrs Autoimmune has trampled all over me with Rheumatoid Arthritis but l feel for you being young. That's just so difficult and l feel for you I hope you feel a little better soon xx

  • Hi Wolf - welcome to this community. I don't have Lupus but this is such a supportive and interesting community that I feel safe here nevertheless. I was diagnosed with RA 6 years ago when I was 47 but last year the diagnosis changed to Sjogren's as my main disease after a 100 % positive lip biopsy. I believe I have had it since I was young. My main problems to date are neurological although my version of this autoimmunity is also very multi-system.

    It sounds as if you've had a really horrible time of it but I hope that, now you've had investigations and a proper diagnosis, you will get onto more effective treatments as well as getting loads of support from this wonderful community. Twitchy x

  • Thanks Twitchy!! I think I've had my condition since I was young too xxx

  • Hi your best friend now is ginger you have to drink that much you can't but not too much like not burn your throat just take it for example one spawn with beetroot or any juice you like and you have to get used to it every day and please be always positive because your body going to change whether your promotion be positive please and be happy. All the best Mirka

  • Why ginger? What will it do? Xx

  • Hi Wolf1,

    Welcome to the LUPUS UK HealthUnlocked Community!

    We offer a free information pack that contains factsheets, guides and a list of helplines. Also, inside the pack there is a list of LUPUS UK contacts who you can speak to over the telephone. The contacts are volunteers who mostly have lupus themselves- they are not medically trained by are there as a listening ear to offer support and advice. To download or request this pack click here: lupusuk.org.uk/request-info...

    We published a factsheet on ‘LUPUS: The Skin and Hair’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

    We also published guides on employment which you may like to read: lupusuk.org.uk/wp-content/u... lupusuk.org.uk/wp-content/u... . If you would like a copy of these guides posted to you, you can email me at Chanpreet@lupusuk.org.uk

    Please keep us updated, all the best.

  • Hi Wolf 1 Its certainly a difficult time for you I am so impressed you have returned to work, keep positive thinking of you Jan

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