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Manchester Rheumatologist

Discussion in 'Find a Lupus Doctor' started by toasties mum, Mar 31, 2013.

  1. toasties mum

    toasties mum Registered

    I was diagnosed as having SLE for 8 years but in August my Rheumatologist discharged me saying she thought I had Nodal OA and Fibromyalgia. The rheumy who originally made my diagnosis is a senior colleague of hers and she thought his diagnosis should have been reactive arthritis induced by the parvovirus virus. Having noted my blood were normal she gave me a plan to reduce my Hydroxychloroquine and prednisone and advised my GP to follow up.
    Over the last few months my OA has worsened and stiffness and pain in hands,knees, shoulders and I have nerve pain in my arms from stiffness in my cervical and thoracic facet joints, which my physio has said need injection at the pain clinic. I have recently had red/ purple cheeks when I have been working in an office environment.
    My Rheumy told me that I no longer needed to be cautious about the sun and did not need to wear high factor sunscreen routinely. On Friday after a family walk, I woke on Saturday with a very red erythematous rash on my face and neck and felt very fatigued.

    The rash has subsided but I really am anxious..I think I had a reaction to being out in sunlight for a few hours without sunscreen. I think I would be justified in asking my GP for a rheumy referral as a second opinion, and if she won't refere I would raid our savings and go privately. Can any one recommend a doctor in the Greater Manchester area? Has anyone else experienced the same reversal of a previous diagnosis of SLE?

    Thanks for your help
     
  2. x_claire_x

    x_claire_x Moderator

    Hello.... sadly I have heard of people being diagnosed, then undiagnosed etc etc

    In your case you should definitely seek a second opinion...try and do some homework to find a Rheumy with Autoimmune experience...hopefully somebody will be on here soon with a recommendation..there is also a 'find a dr' link on the main menu of this site.

    In the meantime..do take photos of these rashes...do a daily diary of symptoms grading any pain 0-10; with a note of the weather and how it has affected you that day..also what levels of activity you are doing that day and what you can/can't do....including social life, driving, working, housekeeping, energy levels etc....start preparing for your next appointment.

    To reduce your plaquenil and pred and DISCHARGE you is incredibly negligent in my view....lots of Luppies have normal bloods, especially once stable for a while....time to change Rheumy....:sigh: Be assertive in your right to good health care...its your body, and you are the only one who can fight for the correct treatment, just sad it has to become a battle.

    Take care and all the best....Claire
     
  3. debatat

    debatat Moderator

    Claire has given you excellent advice. The only thing I would add is that you could try contacting LUPUS UK for a rheumy recommendation.

    I wish you well.
     
  4. toasties mum

    toasties mum Registered

    Thank you for your advice. I have pictures of my rash and will keep a diary of my symptoms in
    Anticipitation of a Rheumy appointment. Thank you debatat for the links to articles about sun sensitivity you
    posted on the forum.

    Toasties Mum
     
  5. caper

    caper Registered

    Have you tried the rheumatology department at Manchester Royal Infirmary?
     

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