next rheumy appointment

Hi everyone i have been under rheumatology since January 2015 due to fatigue muscle pain joint pain and swelling. My consultant was thinking arthritis and ultrasound scan was fine with only mediocre raised bloods. I next saw a registra in March and showed her some pictures of a red face (red strip going across cheeks and nose) and skin rashes. she wants me to see my consultant again and this is in August. I went to see my GP about the red face alongside some other female symptoms and though the red face could be hormonal. He doesnt think so and has mentioned lupus and that i should discuss the possibility with my rheumatologist. I also showed GP my hands as the tips of my fingers look like i have been handling newspapers all day as they have that black appearance to them. Hands and feet go cold and can be under blankets in the summer. So he thinks i also have raynauds. I have previously been under cardiology for chest pains (which i still get) fast heart rate and breathlessness and i have an underactive thyroid. Now i know my ANA was negative when bloods were taken in January. So my question is what should I be saying at my next rheumatology appointment? i am still taking pictures and was thinking the month before appointment i will keep a diary. Are there any questions i should be asking. can you have lupus but bloods are negative? Sorry i just dont know what to do and ive had enough of this pain and fatigue and the embarrassment of the red face. Thanks in advance.

3 Replies

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  • Yes. Autoantibody titres fluctuate. If you aren't happy, ask for more tests. It's all about cost now. The service you receive from the NHS is dictated by money, not necessarily the best care for patients. Auto-immune disorders are not always easy to diagnose as they mimic other diseases, so it's a process of exploring and eliminating differential diagnoses. Just keep plugging away until someone finally gives you a definitive answer.

  • I have a wonderful rheumatologist. My bloods are negative but it was him who brought up the possibility of seronegative lupus. Told me that 2% of lupus patients have negative bloods and I could be one of that 2%. For now he diagnosed me with a connective tissue disorder but started me on Hydroxychloroquine. Next appointment is in November as he wants to see how I do on the medication. In the meantime I have had a capillaroscopy, which was abnormal, and am waiting for pulmanoray tests to be done. My GP is seeing me at least once a month and can contact my rheumatologist if he feels it is necessary. Keep your diary and, if possible, put at the start when things started. Photos are also useful as it shows what is happening if it doesn't happen on the day of your appointment. Bring up the possibility of lupus, using your GPs name if necessary. Dr X told me to ask about the possibility of Lupus.

  • Hi birty 81,

    I have almost the same synptoms as yours, on top with sjogren makes my eyes and throat dry all the time, recently I have toothach + headach too. Sometimes, you dont think those pain /ach are related, they do! Read more posts, you might find what you have to ask your specialist. I have told by the rheumy doctor in hk if possible, dont eat too many fig, alfafa and celery as they are photosenitive.

    I spend a years time at gp and treat as hay fever and finally dignosed lupus when i visited my family in hk. After the right prescription, and avoid uv, I feel a lot better now.

    I dont have RA positive blood test, but RO, ALT up to 174 when I have my first blood test for those symptoms.

    My next appt will be in 2 weeks time.

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