Borderline Lupus

[Leylah14]

My Rheumatologist recently asked for me to have some bloods done, one of which was for Lupus. It has since come back as ‘Borderline’ I don’t have a date yet to go back and see her so I was wondering; what does this mean; do I have it or don’t I? Has anyone else been in this position? I’d love to hear from you if you have. Kind regards L.

[JenniferW]

Hi Leylah

A lot of blood tests are for a range, so if you are at the edge of a range it could be an indicator. Lupus is had to diagnose, it doesn't have one blood test which returns yes/no. There are some blood tests which, if they return a yes mean it is more likely that you have lupus, but it isn't a definite. There are a lot of overlaps with other conditions.

Best Wishes

Jennifer

[Leylah14 in reply to JenniferW]

Thank you for your reply it’s much appreciated. Yes that makes more sense, I guess it’s just a waiting game 😊

[Orange9]

Hi, I had this and I'm now on the treatment for Lupus and have been for almost a year

[Sus2372]

Hi please don’t worry. Bloods are very hit and miss at times. My first lupus test came back as a weak positive for Lupus. Having said that I have all the classic signs of lupus such as Raynauds , srojens, malar rash, rashes on fingers and toes that come and go, constant mouth ulcers, exhaustion just to name a few. Sometimes bloods just fail to pick up on being positive but you are 100% symptomatic. Speak to your GP, or the consultant you’re under

[Leylah14 in reply to Sus2372]

Thanks for replying - I also have a number of other signs going on too, rashes on hands and fingers, debilitating fatigue/exhaustion slight Mylar rash, recurring sores/ulcers up my nose, but the worst thing at the moment is the pain in most of my joints, all of which also come and go on a regular basis. My rheumatologist put me on a low dose of steroids about a month ago which really helped but as soon as I finished them the joint pain especially came back within a week. What I thought I’d do is to ring the rheumatologist‘s secretary and see when I’ll get to see her again. Other than than I feel like it’s just a miserable waiting game. I still get on with housework and stuff but just a lot slower - I just have to pace myself and keep positive.

[Sus2372 in reply to Leylah14]

I’m so sorry you’re having a tough time. I started on hydroxychloroquine at the beginning on my journey and I now have that and injections of methotrexate which hasn’t stopped the illness but has made the flare ups so ,I have quicker to pass. If in doubt take photos and make a daily log of symptoms , photos of rashes and when you next go take it with you. Hope they get u sorted soon xx

[Jpmoore]

Same as the other comments really …it’s a waiting game until more tests can, hopefully, give a more definite diagnosis of lupus …and, most importantly, which type of lupus so you receive the best treatment. Good luck and I hope you find out soon…but it can be quite a long journey …one which I’m on myself at the moment!

[Leylah14 in reply to Jpmoore]

Thanks for you reply, yes I’m beginning to realise that it’s a waiting game; thing is all of this has been going on for a couple of decades. Positive mental attitude for me x

[2013mayo]

Hi Leylah,I’m in the same position, my rheumatologist put me on hydroxychloroquine, it certainly helped with the strange rashes I get and also the mouth ulcers but I’ve stopped using it for now as I noticed my hair was starting to get thinner, since I’ve stopped the drug my hair has improved.

What did your rheumatologist give you, I’m also taking prednisolone for GCA/pmr.

[Leylah14 in reply to 2013mayo]

Hi thank you for your reply She gave me Prednisolone but only for four weeks - it was good whilst it lasted. I rang the Rheumatology secretary yesterday, apparently my rheumatologist is off sick herself. Oh well onwards and upwards.

[tree_shadow]

It's a balancing act. The different medications suppress the lupus, but they also come with their own tzoras. So you want to take just enough medication to make sure the lupus is not causing irreperable damage and your quality of life is good enough. But if you take more than you need you increase other risks from side effects that also can damage and effect quality of life. It's a precarious balancing act across a tight rope! And it is different for us all.

[Leylah14 in reply to tree_shadow]

Hi thank you for your reply - yes the reason for such a low dosage/short course of steroids is because of other issues I have. But I’m all about quality of life at the moment and I feel mine is not what it should be, when I see my rheumatologist again we’ll discuss the best way forward. Like everyone else is saying it’s just a waiting game. x