After nearly two whole years of unrelenting flare up, my GP has referred me to Bath Lupus Clinic and they've accepted referral πππ , not sure how long it will take but I've not seen Rheumatology at local hospital for 17 months despite crying down the phone to them so has to be better than that!!
Anyway when I was first diagnosed back in 2016 I tested positive for ANAs and dsDNA as well as low C3. I wasn't tested again till January 2022 when I was still low C3 but negative for ANA and they didn't test dsDNA.
Could ANA change from Positive to Negative due to 6 years of taking HCQ?
I'm expecting Bath to do these tests again and would be helpful to understand what it means, when I asked Rheumatologist in January 2022 what low C3 meant she said she didn't know and as ANA was negative it didn't matter.
Thanks
Written by
Beau2016
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I am so sorry to hear that you have had such a battle to get to see a Rheumatologist and I do so hope that your appointment in Bath arrives soon. Is it at the RUH? I'm not sure why ANA slips into +ve and -ve but it's not uncommon. Mine was tested four times and it was -ve once. Not only that the pattern went from Nucleolar to Homogenous to Nucleolar! I use Labs on line to help me to understand my results. This is a site I learned about from NRAS, so it comes with good recommendation. I find them very useful indeed. I had low C3 initially but with treatment it has gone to within normal range. Hope that helps you a little.
Just to let you know that like dg70, I go to the RUH - my local hospital. I am sure that you will be thrilled with all they can offer you. I certainly never have any complaints. Good luck and if you feel able do let us know how you get on. Funny to think that at times we might all be sitting in the waiting room together! xx
I go to Bath now, private before. I waited 6 months for an appointment but I was bowled over by how good they were. I got 45 mins with the Rheumatologist, they took new bloods as different hospitals use different labs and messurements. I am all negative bloods except dsdna in 2021, now dsdna is negative since hydroxy. Its a good thing it means hydroxy is keeping your inflammation down. Bath look at symptoms not just your blood. Im negative bloods now but theyre upping hydroxy because of symptoms flaring up. They are organising physio, occupational health and dermatology as a start. They have secretarial issues so it's a 6 week wait for my follow up letter but they give you a contact number for flare ups and a lupus nurse is available for advice. All specialties are handled through the centre that you may need. Being a lupus centre of excellence it lived up to that accolade. It's worth the wait I hope all goes well. I saw Flower by the way, she knows her stuff.
It is certainly a great centre. It is my local hospital and they were exceptionally quick off the mark for making sure they got my initial inflammation under control. The nurse specialists are stars and really great at getting you support if flaring or something new pops up. Physio support is outstanding and everyone is so friendly. xx
Good to hear RosieA. I only joined Bath this year and only diagnosed in 2021. I was in London before coming to Wiltshire and with Covid I went private, at least it got me diagnosed as I'd been suffering with allsorts for years. I was a bit anxious about coming away from private care, although with all the issues I had it was getting too expensive, but after getting a recommendation about Bath and finding it was on my doorstep I couldn't believe my luck. Nice to hear that they really are 'that' good at Bath as opposed to patchy care at best from some other hospitals. My last hospital was called 'Mayday' as a nickname. It says it all ππ±
Yes, in short. The plaquenil you are on can do that. There is a video on here (posted recently) by Dr Kaur who explains how plaquenil (hydro) works. Sorry, l can never spell the generic name of it! Anyway, he talks about it and ANA.
Thank you I'll look for it, thats what I'd always guessed but awful doctor last year told me because my ANA negative then low C3 was probably an anomaly.
Little update: having spent last 17 months begging for an appointment, this morning I wrote to patient services manager requesting my blood test results from 2016 and 2022 (they're the only ones I've ever had) and by lunchtime they've replied to say my existing consultant will see me in two weeks time face to face! First time since 2019!
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