First NHS appointment at The Kellgren Centre MRI - LUPUS UK

LUPUS UK
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First NHS appointment at The Kellgren Centre MRI

Hi everyone, I promised I’d update through this journey with my second opinion after the first rheumatologist I saw dismissed my bloods and was unhelpful to say the least.

Anyway... following on from my private consultation with the lovely Dr Parker, I have now finally seen him in his NHS clinic.

He’s just followed the plan as per our discussion in his private clinic:-

Referrals to his eye people, lip biopsy and scan on my glands.

He’s trialing me on prednisolone alongside Hydroxychloroquine until enough time has passed for that to kick in (3-4months). He’s going to see me again to monitor how I’m getting on half way through the steroid course so maybe 6-8 weeks time?!

And it’s just a case of seeing how I go on things and see what comes from these other tests I’ll be having done.

He didn’t over promise anything which I really appreciated, although he seems certain there is some immune response happening, he said he can’t always label it. He said it all better than I do haha.

So I just hope my body responds well to these meds, I’ve not taken much medication as they’ve never known until now what’s been going on. I only currently take propranolol which only masks the migraines being 24/7 pain and horribleness!

He talked about feeling normal and I just couldn’t help but say wow that’s all I want and all I could ever wish for.

I’ll update further when I’ve had these tests and results back again and let you know how I’m doing on the meds. I just hope my body isn’t annoyingly over sensitive to these drugs!

Sending you all positive vibes xxx

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That all sounds great following on from your first bad rheum experience. Nothing is worse than feeling disbelieved.

Just one thing: I was seen twice while on steroids (first by injection, second on Prednisolone and it can and does mask things. But I guess your rheum will have factored this in if he’s as good as he sounds.

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Yeah he was thinking of waiting until I’d had these tests and results through before starting meds but then he said he didn’t think it would impact them so decided to put me on them now. I said I was happy to do what he thought best. I’m hoping it will work like he says until the Hydroxychloroquine sets in but 🤷🏼‍♀️ time will tell xx

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I had one rheumatologist who refused to give me steroids until I had completed all his tests, including muscle tests even though I was desperately ill, in great pain and in a wheelchair at the time......so you have done well! Your doctor seems to be taking a pragmatic approach. It also worth noting that some lupus tests may need to be done more than once to confirm so don't read too much into a single negative. My thoughts are with you for the clarity of a diagnosis and, above all, excellent care. With very best regards Lily.

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YAAAAAY 👏👏👏👏👏

Thanks for this great news! Please keep us posted

😘🍀😘🍀 Coco

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Hi LittleMiss. Your journey and symptoms sound very much like my own. I was interested to read in your recent post that you've been given a diagnosis of Sjorgrens. May I ask if your lip biopsy was positive? I ask because I seem to be sero-negative (for everything!) and my lip biopsy for SS was also negative. Thank you.

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Hi, they decided not to do the lip biopsy for now as my consultant has said there is enough evidence to diagnose without it and wouldn’t want to complicate matters should it come back negative. It was booked in for this month originally. Anything else I can help you with feel free to pop me a message 🤗 x

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Hi. Thanks for getting back to me so quickly. You really do seem to have an excellent rheumy - good news for you! I see my rheumy in a few weeks for review and I'm desperately hoping for a Dx - or at least some treatment if they can't put a name to it. Throwing a bit of a tangent here, but does anyone know whether it's possible to have anti-Ro and/or anti-La antibodies and a negative lip biopsy???

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