What's next after dermatologist confirms lupus after punch biopsy

Hi to everyone, just wanted to introduce myself. Have suspected Lupus for last 20 years or so with rashes and many symptoms. In this time have seen 3 dermatologists and 1 rheumatologist without definite diagnosis. However the last dermatologist did a punch biopsy in early January and wrote to me to confirm Lupus. Went to see him today, finally thinking I may get some answers but instead he has referred me back to rheumatologist. I told him I saw rheumatologist 3 years ago and although she found I had pernicious anaemia due to autoantibodies she didn't find anything to indicate Lupus. He has assured me that I am not being referred back for diagnosis as he has already confirmed the diagnosis of Lupus with Malar rash which is present, other rashes and biopsy findings. He says that primary care of Lupus lies with a rheumatologist who will do further blood tests that only they can order and that they will assess my condition further and decide course of action. He has ordered some blood tests and has arranged for further appointment to see him in about four months and has also said that I will now see him on a regular basis in future but has said that rheumatologist will take over primary care. Is this the normal course of action to take? Thank you for taking the time to read this, hope someone is able to advise as I just feel like I'm being passed from pillar to post :(

3 Replies

  • Yep snap I was like that, I dont see a rheumy at all now, I see dermy everyt 3 months and thoracic meds for emphazena and copd im 4 years in my diagnoises after 15 years so I know how u feel,u need to control ur own health and ALWAYS ask to be copied in on all consultants letters as this is how u find out wot ur consultant says to ur dr, did they give u antimalirias or immunsuppressants??? Im no dr just a fellow sufferer hope ive helpedx

  • Hi Pat11,

    Yes, it is usual for a rheumatologist to take the lead in caring for people with lupus. Would you like one of our free information packs so that you can learn more about lupus? If you would, just send me a private message or email me at paul@lupusuk.org.uk with your name and address.

  • This is how my lupus and my vasculitis was diagnosed, I also have pernicious anemia. I spent a lot of time battling between dermatology and rheumatology, the best advice I can offer is to get a copy of all of your medical records (this cost me around £50) and keep them in a file. Always ask for copies of everything, blood tests, scans, letters etc as this will help you keep an accurate record of what has been happening. I also found it really useful to take my husband or my Mum with me as sometimes you can feel very overwhelmed especially if you are feeling rubbish, I found that they often asked questions that hadn't occurred to me or that I had forgotten (brain fog!) and it provided an extra pair of ears! I hope you get on ok x

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