Help & advice needed?

Please can anyone advice me on how to get a quick diagnosis..I was diagnosed 20 years ago with lupus but then my consultant change it to urticaria vasculitis and rheumatoid arthritis I was given steroids and other medication which eventually after 2 1/2 years went into remission. It's now back and I'm totally overwhelmed...I don't know where to's difficult even getting to see my GP at the moment, I'm scared that I'm going to be pushed from one specialist to another. I know a lot can change in the medical field in 20 years so I'm clinging onto some hope that's it's not going to be a long drawn out painful process as before ..any help advice would be gratefuly appreciated. Sara x

6 Replies

  • Sorry you're suffering Sara kitten but things have changed in the last 20 years. First off the stress and anxiety are also symptoms of Lupus. If you can't get an appointment with your GP ask them to call you back, it always works for me and I get an appointment. Remind your GP about your initial Lupus diagnosis and ask to see a rheumatologist urgently. I know you will be in a dark place at the moment but remember we are all here to help. Xx

  • Hi Sara, Thanks for sharing your post as it is a reminder that we all feel vulnerable at times.

    I can relate to it cos I have Retinal Ischemia (an eye disease which I'm concerned is becoming active) as well as Lupus & 8 others. Your symptoms are not a figment of your imagination. I have problems booking ASAP appts with my Ldn GP & request a regular rather than a locum. Are you UK based? Which part? Who's your Rheumatologist?

    On your request, your GP can refer you to hospital specialists. Our symptoms are complicated, we tend to be under the care of 1+ specialists. I'm under the care of 5 specialists in Ldn & I give thanks for their care as its kept me alive. You may have to go thru a lot of testing & may have to chase up the results with your specialists so your Rhematologist can assess the next steps. If I have repeated symptoms, I keep a note of them to present to medical profs.

    I've got a busy day so my not reply ASAP but Pls keep in touch with us on this forum.

    I wish you well x

  • Hi Sarakitten. this might help. It is what I took to my GP and then all the other specialists. They really took notice. (1) a sheet that summarised as many health events as I could think of historically (Date, Description, Doctor name, What was being treated). (2) Recent symptom summary. This included a picture of my diary over 1 month with my symptoms each day and a red/amber/green rating of how I felt (lots of red). (3) a sheet called "my medical team" that had each doctor's name and speciality and their contact details. (4) any recent pathology results or test results if I have them. On the detailed history I would write in the "what was being treated" column, "lupus flare", "lupus diagnosis", "lupus reviewed/queried". Get the word lupus on there. On recent symptoms, put "possible lupus flare, require review by rheumatologist". Give it to them in writing and it looks official ... the doctor's love it. xxx

  • You've got great replies Sarakitten (lovely name)

    I can't add much, but these 2 links may be helpful: they give clear concise advice re prepping for appts including a form to print out and use in collecting the kind of important details virginia is specifying:

    Am glad you're here

    Please let us know how you get on

    🍀🍀🍀🍀 coco

  • Thank you everyone for your helpful replies.

    I managed to visit GP today after some persuasion with the receptionist. I actually broke down in tears ( so unlike me ) as soon as i arrived..he requested urgent bloods which I had to go back for, no referral as yet till blood results come back..I'm keeping a diary from today so I'll be well equipped and taking images of swelling rash joints etc

    Has anyone had any flare ups related to menupause? Early menupaise? I was told by my gynaecoloist ( severe endometriosis) that I'm possibly starting early menupause is there a possible link? Just seems odd that I've had 20 years lupus, urticaria vasculitis free.


    I'm from Yorkshire :-)

  • Contact your reumy.

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