LUpus Patients Understanding and Support
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Its four weeks since I saw my new rheumy and tomorrow I am back to put care plan in place with rheumy nurse.i have no idea what this will involve but was give info on types of immunosuppressants.i am already on prednisone and plequnil (have been for 14 years) I have no idea what's going on or what exactly they think is wrong.all bloods ok a part from low ferritin.i am convinced I have erythromyalgia as a secondary but this has not been confirmed.i am so nervous and after all these years want a clear idea of what I have.i am scared I will leave none the wiser

1 Reply

I can understand your anxiety which is very understandable.

You mention that you saw your consultant 4 weeks ago. Did your consultant discuss with you a change in your medication? Medication can only be prescribed by your consultant. I gather you have been taking corticosteroids and Plaquenil (an antimalarial). Many patients are also given immunosuppressants which are also "steroid sparing", that is, using them can reduce the level of corticosteroids.

What you can do is to prepare in advance a list of questions which you can present to the nurse. If necessary, perhaps you can ask to speak with your consultant if you are still feeling worried?

I ope your meeting goes well.

With good wishes,


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