I think I've been diagnosed?!: Early December 201... - LUPUS UK

LUPUS UK

32,248 members28,608 posts

I think I've been diagnosed?!

eescvc profile image
5 Replies

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.

Written by
eescvc profile image
eescvc
To view profiles and participate in discussions please or .
Read more about...
5 Replies
PMRpro profile image
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 profile image
eescvc in reply toPMRpro

Thank you. I'll read into this.

leslieliesel profile image
leslieliesel in reply toPMRpro

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

PMRpro profile image
PMRpro in reply toleslieliesel

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

Paul_Howard profile image
Paul_HowardPartnerLUPUS 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.

Not what you're looking for?

You may also like...

"so that means I have lupus then?!"

Sorry to just jump in but I am shaken up as found out I may have lupus in the worst way. Sorry this...

Newly Diagnosed

Hello, I’m new to this forum and was only diagnosed with SLE in late December. I’ve also got...

Sore throat - I have had a sore throat for months. It hurts every day. Some days are worse than others. I was diagnosed in November and am i

Into my 6th month of meds - Hydroxychloroquine 200mg twice a day. Most of my symptoms are much...
Wendy39 profile image

Lupus Diagnosis

I haven't been online for some times, perhaps years. I don't think I have posted since losing my...

Feeling Blue .... anyone else?

Has anyone else experienced such frustration between different clinicians? I have been under...
Rachy24 profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.