Apart from my normal aches and pains - age and sero negative inflammatory arthritis . I take 200mg hydroxychloroquine and top up with paracetamol when I need to. I have recently had a lot of extra joint pains - the base of my thumbs have been pretty sore and my fingers too - they were my worst symptoms when I was first diagnosed in 2014, my knees and ankles have felt pretty awful too. Overall have been feeling stiffer than usual and very tired - as if everything is a bit (or a lot ) of an effort
I don’t feel as bad today as I did 🤞 and I’m wondering a) have I had a flare of some sort and b) can a flare sort itself out?
Probably sounds an odd thing to ask but I’ve always been steady and have never had what I imagine a flare would feel like until whatever has been going on recently.
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I was diagnosed in 2007 but, until recently, the worst 'flare' if that's what it was, was a searing pain in the base of my hand/wrist a few years ago. It kept me awake for the whole of one night but then disappeared.
Other than that, I've had niggling pains that come and go, ie, running down the left edge of my left foot and then the right edge of my right foot.
In autumn 2022 the only problem joint was one MCP in my right hand. But then, gradually, it spread to other MCPs and the base of my thumbs before coming at me with what has felt like a full force attack over the last few months - wrists, shoulders, knees, jaw until I had to take a break from work.
I would say if you're experiencing anything that feels more than temporary to contact rheumatology. I've had two or three phone consultations over the last 6 months or so, leading to steroid jabs, ultrasound and physio tel appointments and eventually got to see my consultant for the first time since 2018. He arranged for me to have Rituximab infusions though I'm currently still on Sulfasalazine as well.
Is your RA med holding the RA back enough? I am sorry to hear this and hope you can have a chat with the rheumy nurse. If Hydroxy is your only RA med and on it since 2014 then it might need something adding or changing to give better relief? x
Thanks for replying NK. Think you might be right. So far I’ve been fine with just hydroxy and the odd paracetamol, I gather I’m in (or was) in remission - it was one of the rheumy’s I saw a few years ago who suggested paracetamol as a top up. I find I’m much better if I can keep moving - walking and Pilates.
I'm definitely just getting over a flare that, fingers crossed, seems to be settling. My knee has been very sore and I've used a support to walk the dogs a few mornings but this morning my knee feels a lot better. I've also been really stiff and my right hand and wrist were affected.I didn't change my medication but I did my best to get good sleep and went swimming.
I’m probably in denial because I’d rather not change my meds, I feel well in myself on the hydroxy and so many drugs leave me feeling awful that I can’t face changing - if that makes sense. I’d rather a bit of an ache and feel good inside than feel awful but be less achy. 🤔
I was like that in the heat we had a couple of weeks ago. Once it cooled down it was a bit better. I'm thinking your hydroxy isn't enough now. I'm on sulfasalazine and etanercept now and it's much better except when it's hot and humid. They told me I was in remission 5 months ago or so but I still get thumb, knee, shoulder and hip pain but they tell me it's osteoarthritis. I hope they give you something else to help you it sounds like you need it.
In my experience a flare is a short term increase in my symptoms. I get them from time to time and don't worry if things return to normal, which they usually do within one or two weeks.
Longer term gradual increases in my symptoms, over time, in the past has indicated either a change in disease activity or reduction in effectiveness of the current treatment regime.
If you get a persistent increase in disease activity you should contact your rheumatology team.
I have lost count of the flares I have had since I stopped methotrexate and the rheumy refused to give me anything else.
I heard a consultant on Inside Health on Radio 4 say that the best thing to do with hands is to use ibuprofen gel three times a day for a couple of days to get on top of the inflammation, then leave it for a few weeks or until it gets painful again. I find that is the best way to deal with it, but yes, with nothing other than paracetamol flares come and go.
I think has you are having a lot of flares you need to go back on medication before you get more joint damage. I would ask to see a consultant if you have no help I would contact the patient advice and liaise service and make a complaint.
It is not for want of trying to get an appointment. The consultant put me down for a one year call back. Then forgot to put it in the system. I have gone one better than PALS though, I am on the MSK Clinical Pathways Group so working behind the scenes to try to get rheumatology in our area working properly again. But they are not cooperating. They are the only group that don't send a rep to the meeting!
Hi , I had one yesterday after injecting, sometimes it can be due to under lying infection, it’s good to try and boost your immune system , paracetamol, cold pack .
Hi there, sorry to hear you have had some sort of flare. I too have been on hydroxy for 6 years and been doing fine with no flares until I injured my knee 2.5 months ago. Not sure if it aggravated RA but it seemed to resurface with some pains, tiredness ( not that bad but enough for me to contact rhumy to see if related). I too don’t wish to change meds but I’ll listen to experts but that said I have found things have settled a bit . I feel weather and how I feel can upset RA ( it’s like it’s a dragon inside of you and you want to leave it sleeping 😁). So I guess for me it depends what’s going on in life that provokes it but so far seems to settle down after a while. Maybe call rhumy - I haven’t seen mine for 5 years and last spoke 2 years ago. Good luck ☺️
If you feel unwell and your joints are becoming increasingly painful then you may be in a flare. I wouldn't leave it to be honest, I'd contact your rheumy and see if you can get an emergency appointment. You don't want it to get a hold. Rarely have I been able to get out of a flare myself without some intervention. These days my preventative measures seem to be holding it down, but if I was feeling unwell and my joints were screaming I wouldn't definitely be in touch with my rheumy. Maybe your meds need to be reassessed.
I've found making Turmeric golden milk at night means my flare is much better the next day, and cutting out refined sugar helps too as too much of that, or hormone surges is what causes mine. Good luck I hope it passes soon
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