Hi everyone, I was diagnosed with RA last year after years of suffering and trying to ignore it! I was pushed into getting a diagnosis because my hands swelled up and I could barely function - fun! My consultant wanted to put my straight on methotrexate but I am resisting because I'm severely needle phobic (hence it taking me such a long time to get diagnosed) and so at the moment I'm just taking hydroxychloroquine, for now.
I haven't really had good conversations with my consultant, he's not a very approachable person and the information I do have i have mostly found on my own....up until recently I didn't even know there were 'flare ups'.
How do people identify flare ups? Is it just through pain levels? My hands aren't as swollen as they were but I do get pain in many different areas, do I assume this pain is all RA and that those joints are also affected? And when I'm in a lot of pain is that a flare up?!
I feel like that all sounds a bit confusing (welcome to my world!) I have always had the mentality to push through my pain and have just got on with it so its hard for me to identify when I am worse, if that makes sense?
Any advice would be really great, thanks
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Emseykins
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Symptoms of RA are swelling, stiffness and pain in one or more joints and flit from one to another often accompanied by fatigue. You can have all or just some of these symptoms. Active disease usually is long term if untreated. When things are stable you can have periods of time when you are symptom free but suddenly all or some these symptoms happen and last an hour days or weeks. Everyone is different and as you start to understand your disease and what may set you off . Keeping a diary is handy both for you and your consultant. I use an injection pen I can’t see the needle and is pain free .. honestly. This is a great forum for support . Welcome
A flare-up is generally regarded as an increase in symptoms and signs after a relatively better period when the joints are not, or less, inflamed.
It sounds from your description as if the disease is not yet under control. Most of us have vivid memories of that awful time when the pain just seems to get everywhere. It's always a difficult time finding suitable treatment and methotrexate is a good one to start with.
It is possible to take methotrexate in tablet form once a week just as with the injection - but most people on here seems to learn to cope with the injections which nowadays are easy and you don't have to look at any needles!
It might help to look at the NRAS website for accurate information about the course of the disease, what to expect and what other treatments are available. If you can be prepared for your appointments with a scary professional it helps to make you better able to challenge them and insist politely on better treatment!
You can take methotrexate as tablets - was that not mentioned? But anyway, give Hydroxy a go as for some people it works great and they don’t need any of the stronger drugs.
I agree with J1707, until you have got your disease under some sort of control what you have is active disease. Flares are basically when your normal disease spikes significantly - and you can feel completely exhausted, pain all over the place and one or more hot, red and throbbing joints.
I am in remission and I do get wandering pains here and there, usually when I have overdone things in a big way. But rarely a full blown flare.
Sadly you”ll learn what your personal disease is like, but I hope it is well behaved and obedient.
Hello and welcome. I started on methotrexate tablets and they helped enormously but they weren’t quite strong enough so I was then moved onto injections. The injections are easy and painless but you might not even need that strength and remain just on the tablets. Whatever you decide, you can always change your mind later. Good luck.
I've only had one 'flare' - which led to diagnosis in 2016 - as I was in agony, unable to raise my arms, get out of bed or raise myself off seats of all description! Stairs were a nightmare in either direction but more dangerous going down and unable to launch myself off the bottom step where the handrail fell short. I'd been an orthopaedic 'case' from infancy and, like you, I'd pushed myself through pain until my 70s. Methotrexate tablets were the solution as I've not had recourse to any painkillers since 2017!
Hi. I know when a flare is coming before I get any pain because of the fatigue, complete lack of energy and strength and a feeling like I have 'real' flu. It can really knock you off your feet but affects people in different ways. You can take methotrexate in tablet form as I do so ask your Rheumatologist about this. It is an awful time when you are newly diagnosed but once you get established on medication that is right for you, you will start to feel much better. x
Ask if you could take oral Methotrexate .....if it suits you it could really help you cope with your RA.
From what one reads here ....flares appear very individual & can be very different at each stage of this disease.
Why don’t you make a list of questions & have a chat with your Rheumatology nurse....hopefully she will be a bit more approachable than your consultant?
Flares are hard work! RA is an exciting disease you never know when the next ache is going to come from!
Don’t wait too long for good drugs! I did and ended up needing a shoulder replacement. The surgeon asked if he could keep it to show students as it looked like the surface of the moon.
I have just joined this group they are very welcoming and knowledgable.
Good luck.
My best advice is to get on methotrexate tablets straight away. I always thought everybody was started on tablets anyway as they're less trouble than injections. Please don't delay. Your RA will only get worse if not treated properly. The outcomes are better the earlier you start treatment and the treatment needs to be aggressive, which means giving you enough of whatever it takes to get the disease under control and not easing off until it is. It takes methotrexate anything up to 3 or 4 months to work, which is why we get put on other things as well, at least at the start. Many people are given steroid tablets, particularly at the start while waiting for the MTX to start working, and often later if the pain and swelling get really bad.
Don't be afraid of these drugs. You are lucky your consultant offered you MTX straight away as some people have had to wait a long time to get a diagnosis and get started on treatment. Please contact the consultant asap and say you want to try methotrexate tablets. Best wishes.
Oh, that's not nice at all. Sorry you're having to go through that. Is the specialist your only point of contact? I've found it helpful asking questions to my GP and the rheumatology nurse aswell. Sometimes my rheumatologist can seem quite harassed and pressed for time. It's a big learning curve, especially in the beginning so you're doing the right thing seeking out info. I understand about the needles phobia completely, I would nearly faint, I had to ask the nurse if I could please lie down for blood tests etc and they would always be happy oblige to prevent me fainting on them.
And also, now I'm 3 years forward from a diagnosis I'll echo a point in the other comments about medication. It's worth seriously considering all options recommended to you, including the methotrexate in whatever form. Thinking long term is so difficult at the early stage but if you need to try different medications, before you get improvement, it can take several months trying each medication which really adds up. The name of the game is preventing permanent damage long-term and a big part of that is finding treatment that suits you. It's so much information to take in at the early stage, even understanding who deals with what is confusing. I was confused about what my GP did, or the rheumatologist or the nurse. It took me a while to get used to practical stuff like that. A flare might last for months or weeks, it just depends what's specific to you. For me, a flare is a significant ramping up of pain and swelling (especially knees unfortunately). I might get times of zero pain or just the odd niggle but a flare is something that's a big change in the way it affects you like more pain, more swelling and/or fatigue.
Thanks everyone that's all really helpful. I didnt make it clear that its the regular blood test monitoring for the drugs that is a HUGE deal for me. Its taken me probably 15-20 years to finally go and have 1 blood test for my diagnosis so the prospect of regular tests for monitoring just feels almost impossible to me 😫😪
My consultant said I could try Sulfasalazine first as the blood tests aren't as frequent as methotrexate but I dont know what intervals this is all at. I also have major fear/anxiety and panic attacks over vomiting and the number 1 side effect to most things is nausea- im a disaster 🤣😫
I realise I just need to pluck up the courage from somewhere and get on meds its just a extremely difficult position for me to be in. Its really good know that there are so many other people out there with the disease. Did everyone go on medication straight away? Were you really bad and in terrible pain at the time? At the moment I dont feel that bad, apart from fatigue and hand pain so feeling well doesn't exactly motivate me to go on all the medication!
I didn’t have much pain when first diagnosed more fatigue,stiffness and swelling but scans showed active disease for quite sometime and I had joint deformity. I still don’t get a lot of pain more fatigue, stiffness and swelling but this means my disease is active.
You sound like me ... the pain is bearable but I can see and feel the damage to my knuckles that’s ongoing. I just don’t want to take the drugs ... I did do methotrexate though as so many people seem to get an improvement from it. I don’t have a needle phobia which must be hard, so took comfort from the regular blood tests . I quit the drug cause blood tests were stopped and it wasn’t helping anyway.Perhaps they will let you drop to less frequent blood tests after a few months if its working for you .
Same here Emseykins, I on Methotrexate tablets, not injections. Couldn't face them, my under lying heat in joints or anywhere on my body may increase as well as swelling and tingling, a bit like pins and needles. They can be random and not all happen at once, but you will gradually learn to recognise triggers for you, sending big hugs, its scary but you get through it and learn to do things differently.
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