I think I've been diagnosed?!

[eescvc]

Early December 2017 - Went to GP with what I thought was RA symptoms. A number of bloods taken.

Late December - GP refers me to Rheumatology after blood results.

Late January - see rheumatologist who goes through symptoms. Takes further bloods and some x-rays. Gives me leaflets on Lupus and Polymyositis. And further reading on methotrexate and hydroxychloroquine. Prescribes my prednisolone.

Mid February - prescribed hydroxychloroquine.

Late February - rheumatology send the GP a letter detailing the situation. The heading reads "connective tissue disorder - lupus? Polymyositis?" And details my prescriptions and symptoms.

This takes me to now. I have another appointment on the 16th April. But I'm unsure if I've actually been diagnosed with anything. I'm on 400mg of hydroxychloriquine daily and weaning my prednisolone slowly.

I'm going to make sure I ask better questions at my next appointment but I'm so confused at the moment.

[PMRpro]

I think it is fair to say you have a diagnosis: connective tissue disorder (CTD) is a diagnosis. There are so many overlaps in these diseases that by no means everyone fits neatly into a box that can then get a tidy label of the type "Lupus".

CTD can be described as undifferentiated - lots of symptoms that suggest it but fit nowhere properly, or mixed - some lupus, some Raynaud's ...

hss.edu/conditions_undiffer...

msdmanuals.com/home/bone,-j...

hope these links help a bit.

[eescvc in reply to PMRpro]

Thank you. I'll read into this.

[leslieliesel in reply to PMRpro]

I have been sitting here trying to reply to eescvc....your reply is perfect...I tend to put emotions into my replies

[PMRpro in reply to leslieliesel]

Thank you - I probably go too far the other way. Head rules heart here

[Paul_Howard Partner LUPUS UK]

Hi eescvc ,

As PMRpro has kindly suggested, it sounds as though you have been diagnosed with some form of connective tissue disease, but at the moment the consultant is not sure whether it may be lupus, polymyositis, a combination or possibly something else. This often happens with connective tissue disorders because they present with similar symptoms and if they develop gradually you may not have all the clinical markers to confirm a particular diagnosis. Regardless, the treatment tends to be the same. Have you noticed any improvement from the hydroxychloroquine yet? If not, don't worry. It can take 3-6 months to kick in.

If you'd like more information and advice about getting a diagnosis of lupus, you may find our blog article here helpful - lupusuk.org.uk/getting-diag...

If you'd like any tips on preparing for your next appointment, this article may be helpful for you too - lupusuk.org.uk/getting-the-...

Let us know how you get on.