My primary doctor just referred me to a rheumatologist to go over my lab work. I am hesitant, because I'm my symptoms are not drastically affecting my daily life, however, my lab work showed a positive ANA with titer of 640 homogenous and 2560 centromere.
Did you wait until symptoms got worse, to see a rheumatologist?
OR
Did you follow through with seeing a rheumatologist pre-diagnosis? If so, how did that work out for you as far as your diagnosis, further testing, treatments, etc. ?
Thanks!
I was diagnosed 11 years ago & at that time my GP referred me to a Rheumatologist for diagnosis. For the next 10 years my symptoms were managed by my amazing GP. I have now moved & my new GP is useless so I am very relieved to have good Rheumy to refer to. So much depends on how good or bad your GP is.
Well worth seeing a rheumatologist to find out if it is autoimmunity, as SLE, for example, is unpredictable and can cause sudden flares, and these can sometimes be severe - that's the main characteristic of the illness. Some meds long term as a prophylactic (like hydroxychloroquine for SLE) can reduce symptoms and the chance of flaring and protect the heart to a degree too - most people tolerate it well with few side effects. Monitoring by a rheumy increases the chance of catching a flare before it gets too far xxx
Definitely agree with eekt - I was diagnosed several years ago (with SLE) and I haven’t had a flare in 18 months but now I simply can’t get up from bed - usually I’m full of energy but at the moment is a real challenge. Definitely get a proper diagnosis because then you can manage this disease better with proper knowledge. Good luck!
Hello I would definitely take up the referral the symptoms can change over time and also it may take sometime to get tests and diagnosis.If you are fortunate and get a good rheumatologist they hopefully will be able to build a picture of your condition over time and give you any treatment needed or monitor you.
I would see the rheumatologist. They will be able to verify that you gave an autoimmune disease, figure out which one it is (hopefully), and put you on medications if necessary. They may choose to monitor you for now. Or, perhaps there are things you can do to prevent it from getting worse. In addition some damage that lupus causes, like low blood counts and early kidney disease are usually detected and verified by lab test, you may not feel different physically until these get worse.
I think everyone is given you great advice. The only thing I would add is the rheumatologist will probably do testing that your primary care doctor wouldn’t think of doing, because they’re not specialists in the area of autoimmunity. Take care and I hope that you get to the bottom of your abnormal labs. A certain percentage of the population has positive ANA without any disease. That is something to keep in mind as well. Xo Nan
Definitely not wait. You are lucky to start on the process w no major damage. Im sure rheumatologist will not give you heavy meds, but they could give you something mild w little risk of side effects such as hydroxycloroqinin that could keep your immune system under control. Once the disease has progressed usually people have to take immunosupressants and steroids that come with plenty of side effects...
Keep the appointment! There's literally no loss in doing so and potentially so much to gain.
I went in to my GP for Raynauds and my GP called me 2 weeks later saying that I had a high ANA and a positive and also high RNP (for lupus, MCTD respectively). He was referring me for an appointment. But I was sure it was ok, because I was only 21 and had no symptoms.
It took a whopping 9 months before I got my appointment. 2 weeks before my appointment, I had a huge lupus flare that left me stuck in bed and missing university, and genuinely felt the worst I've ever felt. I was promptly diagnosed with Mixed Connective Tissue Disease and got a chest X-ray, heart echocardiograph, urine tests, blood tests to rule out any other nasties, and a bunch of respiratory tests. I was prescribed Hydroxy and felt better quickly and haven't had any flares since. I'm now on a 9 month review with my rheumy.
Best case scenario is they diagnose you on blood tests alone and you have a yearly review and maybe some hydroxy to prevent flares and keep antibody levels low. It takes someone an average of 7 years to get diagnosed, and you may as well be on the books now. Worst case scenario is that they send you back to your GP, who will be able to keep an eye out for you if any symptoms start arising.
Hope this helps!
Thank you everyone for all of your good advice from your own experience. It helps me a lot as I start this journey.
I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with .. 
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