Regular tests?

Hi! I'm really new here and was just hoping for some advice!

I recently went to my GP with a rash I've had on my hands on/off for about 2 years now (maybe longer..); she ordered a blood test and said the results were indicative of SLE, but didn't say how so. I've been referred to a rheumatolgist and dermatologist to check everything out and to get another blood test. In the meantime, of course, I've been on Dr. Google trying to make sense of all this!

I was just wondering what happens if it turns out I do have SLE - as in, are there any regular tests or checks I would need to get? I'm not usually in one place for long so I'm just curious if this is something I need to sort out!

Thanks for any help guys : ))

8 Replies

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  • Hi mangotea,

    It is important that you are regularly monitored if you have lupus. Depending what treatments they may prescribe you may need regular tests to check for any adverse effects and it is also important to monitor for the development of any potential organ involvement, such as in the kidneys, because they may not present with notable symptoms until the later stages. For information about the blood tests used in the diagnosis and monitoring of lupus, you can read a factsheet here - lupusuk.org.uk/wp-content/u...

    If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • Thanks so much Paul, that was really helpful!

  • Hi Mangotea,

    I am new here too, and my story is the same as your's. I'm in the exact same spot, waiting to see the Rheumatologist. I don't have any answers for you and I'm sorry. I just want to let you know that you aren't alone. I get lots of sores and rashes, but nothing on my hands so far.

    Did you know that the sun can have adverse effects on the skin when you have Lupus? I took a long walk in the sun a month ago and I still have sunburn marks on one shoulder and part of my neck. This has never happened to me before, sunburn remaining so long.

    Anyway, I'm always worse off at night so I can't write much more. I just wanted to give you a response and say Hello!!

    Best Wishes 😊

  • Hi Amy!

    Thanks so much for replying ☺️ !

    It's nice to know there are other people in my position - I hope you get an appointment soon! I think it's not knowing is the worst thing.

    Ahaha, famous last words but I wish the rashes were anywhere but my hands; it's so easy to scratch them and everyone thinks I'm contagious 😤😂

    Best wishes to you too! 👽

  • Oh! And I forgot to say, thanks for the advice about the sun!! The first time I had the rash I was in morocco and then in Venice so I thought the sun might have played a part!

    Oh gosh, I hope the sunburn goes soon 😞

  • Your Welcome!

    What does the rash look like and do you have it all the time? I was just thinking it could also be some less complex skin eczema, which loves to visit the hands and make them itch. I've had eczema on my hands off and on. It's causes my skin to be very dry on the hands too. I used to go to a Dermatologist for the steroid cream. But once I got the diagnosis of eczema and general dermatitis (severe dry skin), now my GP prescribes the steroid creams I need for these types of rashes.

    I was also wondering if you work with your hands a lot, like in the dirt or water. That's what led to my icky hand eczema.

    My sunburn finally went away because of an antibiotic I'm taking for a cellulitis deep skin infection!!

    :)

  • The rash on my hands kind of changes a lot! It starts off as skin coloured bumps that are really itchy and then changes into purpura, I think! It doesn't fade under glass.

    I was out in the sun at the weekend though and the rash has started climbing up my arms!

    Ahah the most I work with my hands is with the keyboard I'm afraid!

    Oh wow! I didn't know antibiotics would help sunburn! I'm glad it's helped you but gosh I hope the infection is okay!

  • It really sounds like the sun may be causing your itchy rash. And that doesn't sound at all like regular very dry hand's eczema.

    Sometimes the sun really bothers my skin, causing bumps and itching that lasts a long time. And sometimes it doesn't. It's very perplexing.

    I think with Lupus, it has to do with how much of a certain 2 types of UV rays are out each day and able to effect our skin.

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