Hi. Last summer i had an autoimmune flare, with all the markers of SLE (raised CRP/ESR, sore and swollen joints, aching muscles, rashes, exhaustion, high ANA, high dsDNA), but have since had no markers in my blood except low complements before December. All blood results are now currently normal, which doesn't seem consistent with anything I've read. I have a couple of sore joints, but not convinced that these are to do with this (how do you know if they are related or not?). My main current symptom is odd mottling on my hands when down by my side - they were very tingly and pins and needles but this has much improved over the last few months (this symptom started last Nov). I have an odd mild rash (dry) on my cheeks that is more likely rosacea than immune related? I have been on hydroxychloroquine since end of Jan, and it might be just due to that, but i do feel much better than i did last year (including during the long lead up to the actual flare). So my question is, can you have a one off flare and i can just now get on with my life, stop taking medication and assume my body was just reacting to a very stressful year - or is that just wishful thinking? I don't seem to be able to get any answers from my rheumatologist (possibly due to inconsistency of who i see, although the care has generally been good).
Thanks for any advice that you have!
Written by
KA100
To view profiles and participate in discussions please or .
Hi KA100 so pleased you are feeling better. I have taken hydroxychloroquine, mostly in a higher dose, since 2007, back on 200mg per day for a year now. It is recommended for lupus as first line treatment and if you are feeling better, I would not suggest stopping, since lupus doesn't go away and you don't need another flare!! But discuss with your consultant when you next see him/her. I am now reducing my other meds -have stopped methotrexate and trying to reduce prednisolone but the one drug I have been told to keep on with is hydroxychloroquine. I have not had any side effects taken with food over all this time, but you do need an annual eye check of the retina. I have had good local optician who does it and calls me annually. Now after 10 yrs my check up is at hospital. So discuss for your own sake, maybe clear diagnosis would be good. The aim is to have normal bloods and feel ok....
Thanks so much for your reply and good to hear you’re reducing your meds. I’m just really confused about the ANA being normal now, as I thought that was meant to stay elevated even with the hydroxychloroquine if you had SLE?
I have confirmed lupus but the ana is rarely checked! If Im unwell they go more on esr & crp. Crp is raised if you have a bacterial infection so helps in the decision to give antibiotics or not. Facial rash similar to rosacea is typical of lupus and for me as the final decider - it still comes & goes after all these yrs. Does this help? Problem is we are all different!
I was on just hydroxy for ten years and then came off it (as recommended by my rheumatologist) as I seemed to be ‘in remission’. Two years down the line and on nil medication, I had a pretty bad flare + also developed secondary raynauds. So, my advice based on my experience would be to stay on hydroxy and not take any chances. As long as you have regular eye checks and feel ok then I would stick with it.
It is great to hear that you have been feeling better and I hope it continues.
As other members of the community have already said, lupus doesn't completely go away, but in many people it can be a condition with periods of remission and relapses. The duration of remission can vary significantly and could be a few months or could be decades. It is generally advised to continue some form of baseline treatment, such as hydroxychloroquine, to reduce the risk of future flares.
Do you have an appointment with your consultant coming up? It may be worth discussing how you feel with them and see what they recommend regarding your treatment moving forward. Please don't stop any treatment without first discussing it with them because it could potentially trigger a flare.
Thanks for the advice, i think i'm just a little confused about the blood results - i thought even when in remission the ANA is still elevated and mine hasn't been (which is great). I have another appt in 3 months and will try and ask them, but i keep seeing different people and no definitive answers! I won't stop the medication unless they agreed. Thanks again.
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.
lupus flare or long Covid?
Should we be symptom free when not in a flare???
Has anyone experienced mastitis (breast inflammation) as a symptom of lupus?
Horrible virus, now I think it's going into a flare!!!
