Diagnosis finally!!!!!!!!: I know I told you that I... - LUPUS UK

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Diagnosis finally!!!!!!!!

Michelle4267 profile image
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I know I told you that I had seen my Rhemy last week for the first time and that I had a IM Depo Medrone injection 120mg well that's what it was anyway lol and the affects started immediately for me, I received a letter today that she has suggested a diagnosis of sjogren's Syndrome despite negative schirmer's test. I feel so relieved that it wasn't in my head all that was happening, my ANA was 1:800 positive and Anti Ro was Positive. With Crp of 9 not sure if that is low or high or what. I have negative ds DNA but have to see a dermatologist because of rash on face, chest and arms which gets worse in heat or direct sunlight. Has anyone else had similar diagnosis and what usually happens from here. Any helpful comments would be appreciated thanks...

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Michelle4267
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Penelope-Mary profile image
Penelope-Mary

Hi Michelle

It IS a relief isn't it?!

Do you have a follow-up appointment? Hopefully 😷 has a plan for you as you have symptoms and are in pain. Maybe see your GP to discuss what you have been told?

All the best!

PM

🐟

Michelle4267 profile image
Michelle4267 in reply to Penelope-Mary

Hi PM thanks for your response, I have another appt to see her in a few months as I need to see the dermatologist before hand, still waiting for that appointment but seeing as my appointment with the Rheumy was only last week I can't really expect that to happen suddenly, though my next appt came very fast. Yes the plan was to see how the steroid injection went and then after speaking with my dr on Tuesday she said there is no reason why another steroid injection then start on the hydroxyquinine I think that is what is called. Just relieved that something is going to be done, can't always put it down to fibromyalgia which she thinks I have severely but the pain has gone down quite considerably so not sure that is a right diagnosis, will question it. I'm wondering if anyone else has had similar situation.

Penelope-Mary profile image
Penelope-Mary in reply to Michelle4267

Pain is my big and overwhelming symptom of lupus. I ache all over most days....it's deep but tingly pain in my muscles and joints. Hydroxychloroquin is effective, does take 6 weeks to kick in though.

Lupus is so reluctantly diagnosed but when it is, at least there are a few disease modifying drugs on offer. Hopefully you are offered one to nip the inflammatory markers.

Hang in there Michelle...help is on its way at last.

PM

🍹

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