Yay Finally have my 1st Rheumy appointment for SLE ( been waiting since January)
The doctor did tests in December (Said poss for SLE) then called me in and went through a checklist. He said he would refer me and needed to do blood tests for the Rheumatologist. He wouldn't tell me more or what the results were.
Could someone shed light on what the tests might have been? (thinking first in December possibly an ANA) and what can I expect from this first appointment? I have my health diaries ready.
Hello Kelda74
So pleased that will finally see a Rheumatologist about your symptoms.
Do you mean that your GP did blood tests that included a positive ANA test?
If yes, please get a copy of those from your GP surgery. They cannot refuse. They are your blood test results and you are allowed to see them, under the Data Protection Act. Some surgeries charge for the copying costs. Getting a copy might help you clarify a few things and see what other tests were done.
First appointments with a rheumy can go by very quickly. You have health diaries which is good. Take photos of any visible symptoms. Take someone with you. Partner. Family Member. Friend. Just because sometimes you get so emotional about it all, another pair of ears helps. They will often remember bits you can't.
Prepare some notes in preparation. List of symptoms and when they began. Any existing diagnosis. Any current medication. Keep it short. Bullet points. Ideally one side of A4 otherwise it doesn't all get read. Saying this at my last appointment mine was 3 sides - but I make it clear type with good spacing and my diagnosis and meds takes one page. Take 2 copies. One for you - if brain fog kicks in, you can refer to your sheet to remind you of the main points you wanted to discuss. One for the doctor to keep. That way s/he shouldn't get any of the basics wrong.
Always ask the doctor for letters sent to your GP to be copied to you, for your own records. Again, they cannot refuse. It keeps you in the loop. They often say things they never said to your face. I found out I'd had positive blood tests that they'd never told me about!
ANA indicates inflammation but is not lupus specific. However 95% do have a posiitve. So 5% can have lupus without it. So hopefully they'll do an ENA panel for further indication of your illness. There's also the anti-dsDNA blood test that is lupus specific. But not everyone has a positive blood test for this either.
The American College of Rheumatology criteria apply to diagnosis.
"Diagnosis
While no single test can determine whether a person has lupus, several laboratory tests may help the doctor confirm a diagnosis, or at least rule out other ailments. The most useful tests identify certain autoantibodies that are often present in the blood of lupus patients. A biopsy of the skin or kidneys may also be ordered if those organs are affected. The doctor will look at the entire picture – medical history, symptoms, and test results – to determine if you have lupus. Other laboratory tests are used to monitor the progress of the disease once it has been diagnosed.
Eleven Criteria of Lupus
At least four of the eleven criteria of lupus from the American College of Rheumatology are usually present for lupus to be diagnosed.
Malar rash – a butterfly shaped rash across cheeks and nose
Skin rash – raised red patches
Photosensitivity – unusually strong reaction to sun light, causing a rash or flare
Mouth or nose ulcers – usually painless
Nonerosive arthritis – inflammation in two or more joints.
Cardio-pulmonary involvement – inflammation of the heart lining and/or lungs
Neurologic disorder – seizures and/or psychosis
Kidney disorder – increased protein or clumps of red cells in urine
Blood disorder – anemia caused by damaged red cells, low white cells or low platelet count
Immunological disorder – when your immune system attacks healthy cells
Antinuclear antibodies (ANA) – positive blood test not induced by drugs
"
Check out the LUPUS UK website and the publications etc they have on symptoms etc.
I hope that your appointment goes well. If you are well prepared, I am sure it will.
Happy to answer any further questions that you have.
Best wishes
Wendy
Thank you so much Wendy for all the help. I have asked about the tests and they just ignored my request for more information and was denied a patient summary. I'm hoping the rheumatologist will be more helpful with the tests and results. I think the criteria list is what he went through with me in January, I answered yes to 6 of them that I knew of. I have wrote symptoms and diagnoses down so your help has made me feel more ready. This is so helpful so thank you very much
It’s no problem at all.
Please ask again about getting a copy of your test results.
If denied again, put your request in writing to the GP surgery practice manager, as this is wrong that they are denying you access to your own records.
I had issues with my care and I got a full set of my records from the hospital and GP.
Good luck and please ask if you need any more help or if you want advice on specific symptoms etc.
Wendy
Wendy39 has given you excellent and comprehensive suggestions. You may find, however, that you are unable to take someone with you because of Covid restrictions. All my hospital appointments prohibit anyone but the patient. This should be explicit in your appointment letter. I took my phone with me and my OH sat in the car and with the agreement of the rhuematologist I put OH on speaker phone so he was able to support me remotely. Perhaps you have a family member or friend who could do this. He also acted as my scribe for all important points or could anotate all my questions.
Do remember to summerise the meeting - so that you can ensure your understanding. There is also new Lupus diagnostic toll developed by EULAR 2019 which is worth a look at. It is a points system, with +ve ANA being a prerequisit.
Hope this helps and good luck x
Thank you for the brilliant idea, yes my son could do that for me. I will check the EULAR 2019. Thank you for help x
Yes dear, I’m diagnosed with the same condition, u start with blood tests, scans to detect organs in your body. Then they start treatment.
Thank you Gubby_1 that clears things up 
You welcome
Hi Kelda, I've been waiting since Jan, so you've given me hope I might get something soon too 😊 Hope it goes well!
Thank you I will be wishing your appointment very soon, I hope it comes quickly for you and all goes well
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