Hi, I saw my rhuemy who said I was on the 'lupus spectrum' and prescribed hydroxychloroquine and wants to see me in 3 months. Can anyone explain what the spectrum is? When I asked 'so do I have lupus then?' she replied 'you're on the spectrum'
I'm confused!
Very. good question I also would like more info
It takes a long time to get a diagnosis when you have an autoimmune disorder. Very frustrating. It took me 3 months after seeing a rheumy for the 1st time to get diagnosed. From talking with other lupies, I'm one of the lucky ones, sometimes takes longer. I remember being extremely frustrated and a little freaked out. Best advice I recieved at that time was from a nephrologist my rheumy had referred me to. He said, "We can't call it lupus yet, or whatever your diagnosis will ultimately be, but the main thing is you are being treated now. What it's being called doesn't matter in the grand scheme of things.". Made me feel a LITTLE better about it!! Take pictures when you can and report ANYTHING that seems odd, even if it seems totally unrelated to you........autoimmune diseases can cause all sorts of issues. Don't wait and hope that symptoms such as rashes, sores, swelling will show up when you're going to see someone. Make a list of everything you want to discuss before you go and make sure you have a chance to discuss it. You may find that googling "How is lupus diagnosed?" will help you understand the whole process. Good luck!!
I was also on this spectrum to start. I was told my symptoms was shouting out lupus. I was also lucky I got diagnosed very soon after my first real big problem. I also had the three month check up after the first appointment. I was put on treatment for lupus right away. I will have my 3rd appointment in a weeks time this is after 5 months.
It's hard to diagnose for sure if you don't tick all the "if you have all these symptoms it's this illness" boxes. I have the joint and muscle problems and fatigue but not the skin problems associated with SLE. Some of my blood tests have also indicated lupus.The Rheumatolgist is a bit confused, and has called it mixed connective tissue disease but I really don't care about a label, my symptoms are being treated with reasonable success.
There is such a wide overlap with these autoimmune problems which is really what on the spectrum means, just a wide range of problems under one umbrella. Hope this helps a bit and good luck with the treatment.
thank you, your story sounds very similiar to mine
Hi faipop ,
I'm glad to see that the other members of this community have provided some helpful comments already.
Lupus is sometimes considered to be a 'spectrum disease' because it presents so differently in everyone and it can often develop gradually over a number of months or years. Lots of people may initially be diagnosed with something like, 'incomplete lupus', 'probable lupus', a 'lupus-like' condition, or undifferentiated connective tissue disease.
This often means that you have presented with a number of the clinical features of lupus, but not enough for a confirmed diagnosis. People with a diagnosis like this may go on to develop further symptoms and blood markers in the future - or they may not.
I hope that you find the hydroxychloroquine helps to alleviate your symptoms. Please keep us updated with how you are getting on.
If you'd like to read more about getting a diagnosis of lupus, we have a blog article which you can read at lupusuk.org.uk/getting-diag...
If you need more information about lupus and LUPUS UK, we also have a pack which you can request or download at lupusuk.org.uk/request-info...
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Some advice please!
