How long after being diagnosed did you see a Rheumy

I have recently been diagnosed by accident after being in hospital for a stroke. I received an appointment for Rheumy for June but now that has changed to July. I have had symptoms for so long and even asked my GP if he thought I could have Lupus and was smiggered at. How long did you have to wait for an appointment? Thanks

4 Replies

  • After 3 months of uncontrollable rash (face & neck), headaches and feeling very tired and sore and many visits to GP, someone suggested an ANA test. With positive result I was in to see Rheumi within 2 weeks, with follow up 4 weeks later. I am sorry to say that when she first suggested possibility of Lupus, I did not know what she was talking about. She started me on Prednisone (lasted 3 months) and Plaquenil right away to treat "Lupus Like Symptoms". For the past two years (still on Plaquenil), because of work moves, I have seen different doctors that act like I made it all up, that I am a Lupus Wannabe, and they were just dismissive. The Rheumi I have now took one month to get into, have seen him 3 times since, agrees with original Rheumi but is not committing to SLE because he says no organ involvement, but is continuing treatment with a view to "watch and see", which is I guess all we can do. My next appointment is also in July.

  • I was already seeing a rheumy at first I was diagnosed with fibromyalgia it was my rheumy added on the lupus diagnose.

  • I waited for 4 weeks for rheumy appointment, would have been longer but with a little cheek on my part getting in touch direct with rheumy secretary and explaining how its affected me, they took pity on me and now have appointment on Tuesday 14th may :) hopefully will get an answer once and for all, if not diagnosis at least some medication for symptoms and advice, heres hoping. hope your flares are little ones or non at all, wishes mark.

  • Sounds like your GP has not been informed that you have been diagnosed with Lupus, personally I have found a lot of problems with different letters not being sent or not being accurate. I wonder if you have a contact person on the letter with your appointment. Maybe the consultants secretary. You could phone her and ask to be seen sooner. Most clinics will have a system where they can fit urgent cases in.

    Once you have been seen make sure you get copies of the letters sent to the GP.

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