What is classed as a flare?

[Cat-E]

Hi, I was diagnosed in November, had a steroid injection and started on MTX, once the steroid started wearing off the pain and swelling in my knees returned straight away but not in my hands, they have been great. Had a load of fluid sucked out of my knee and another steroid injection about 6 weeks ago with good results but now for the past 2 weeks my hands have started hurting and thumb joints are inflamed. Is this just normal day to day living with RA or does it mean my meds might need tweaking?I have an appointment next week so will of course will mention this then but just wondered what a flare up actually is, I imagine it's much more painful than what I'm feeling now but what do you do when you have one? Painkillers? Steroids? Change or increase in meds? The unpredictability of this disease is doing my head in!Thanks

[Amnesiac3637]

Hi Cat-E. Firstly have a look at all the posts to the right of yours posted on the site as there are lots of discussions regarding flares which you may find helpful. You’ll get more responses soon no doubt from others on here.

Secondly, you’ve not been diagnosed very long with this horrible condition so it’s not easy to say that your flare is to do with needing tweaking of existing meds. You’ve fortunately had a couple of steroid shots which work up to different lengths of time for different individuals and will reduce inflammation . MTX can take months to reach peak performance and even then it may not be suitable for you or may need another added drug to make it more effective. You’ve only been on it a very short time and old timers on here will tell you it is trial and error as to what works and for whom.

You put your finger (thankfully not swollen) on it when you said the unpredictability of this disease does your head in! I’ve had RA for 34 years and it’s still unpredictable so I’m afraid there’s no quick fix. Having said that, you’re really fortunate these days that the medications are so advanced that joints are not damaged in the way they used to be and your rheumatologist has many fixes up their sleeve.

Keep asking questions of your doctors and if you’re not happy go back and say so. All the best and hope you get the best possible outcome very soon.

[HeadInASpin]

Hi Cat. I was diagnosed last May and have just had leflunomide added to my MTX as I wasn’t seeing any improvement. I totally agree that the unpredictability of this disease is very difficult to come to terms with. Much of the time, the way this disease affects me makes no sense at all! I have been grateful for the wisdom of others on this forum with many saying that they have begun to lead a normal life, even if it's taken a long time to get there. I look forward to the day when you and I can count ourselves amongst them.

[ruth_p]

I’ve had this disease since 1995 when I was diagnosed at 14. It seems like what one person classes as a flare can be different to someone else’s definition. As you are so newly diagnosed I wouldn’t call what you have a flare rather that they’re still trying to get your meds right. I only class myself as having a flare when I have been in remission and my medication has stopped working. My last flare was in 2015 when my immune system built up antibodies to the Humira and it stopped working completely. I was changed to Tocilizumab (another biologic but that worked differently) and have been in remission since then. I work full time and go to the gym and walk the dog and live a “normal” life. I hope they sort your medication out soon and you get to enjoy the benefits of being in remission. 🤞

[Cat-E in reply to ruth_p]

Thanks, this is very positive to hear. When you say remission, is that classed as no pain or inflammation or manageable pain/inflammation? Does it mean no active signs of the disease? I absolutely don't think I'm having a flare but it makes me wary of having steroids again as I feel that having them masks the symptoms and they only start to appear again or worsen once the steroid starts to wear off. Having said that the miraculous cure that steroids seem to be for a few weeks is bliss! Thanks again for your post which gives me hope 🥰

[ruth_p in reply to Cat-E]

Remission is when you have low disease activity, so low inflammation and a low disease activity score, therefore causing less damage to your joints. My CRP is less than 1 (it was 179 in April 2015 before starting the toc) and no visible inflammation either. I’m coming up to 30 years of RA now so you would expect some wear and tear in my joints hence the knee pain which is probably osteo but I don’t take extra painkillers for it because it’s manageable.

[lily2003 in reply to Cat-E]

I’ve never had much inflammation. So, for me, remission has meant (to me and my rheumy) that my hand joints aren’t regularly tender in the morning. Once in a while tenderness (maybe a few days one month) is what I think of as “a flare”. I was deemed in remission about a year after diagnosis, which was 4 1/2 years ago. I received my diagnosis based on very tiny “bogginess” in some finger joints, a “popeye” elbow (swollen bulb) that went away on about a week, and my extremely positive anti-CCP test result. I discuss with my rheumatologist every single visit my persistent thought, “Do I really have RA?” because I have hardly ever had inflammation (that I can see — who knows what’s going on internally!).

So just to reiterate what this lovely community here often says, RA presents so differently for people.

Best of luck; hope you reach remission soon,

[Happy5]

Takes few months for the body to adapt to MTX treatment it's a bit of a roller coaster. The first year is unpredictable as treatment kicks in, they treat symptoms, work out what's working & if alternatives are needed.

In my case I also have OA in my hands (was x-rayed few years back to confirm) plus also in my knees, maybe check this too? I find when in a flare yes my knees & hands are swollen and painful.

You will get to know your body's responses and work out what's going on which helps.

Remission for me is mild aches/pain, better movement, less fatigue.

Speak with the specialist nurse in your RA team have you got an advice line number? They support your care plan & can help with reducing symptoms. You seem to be getting this at present with steroid injections & fluid removal from knee.

Hang in 🙂

[Cat-E in reply to Happy5]

Hi, yes I do, I have an appointment on Tuesday so am waiting until then, they seem really good although it scares me that they keep saying once we've got you stable we'll hand you over to your GP for care 😳 My GP is a bit rubbish as in they asked for advice from rheumatology back when I first went to them last August, rheumatology asked them to refer me and my GP 'forgot' until I queried why I hadn't heard anything in the November 😡 I really don't know how they forgot when I was on the phone to them crying in pain most weeks so I really don't want to be handed back to them!!

[Happy5 in reply to Cat-E]

Not sure how your surgery works handing back to GP is more about booking in regular blood tests , getting your prescriptions done. Do you have access to making online blood test with your surgery? You will still be monitored by the RA team and should have access to the advice line for RA issues, make sure you know how to contact them. 🙂

[Cat-E in reply to Happy5]

Ahh right, I already get my bloods done at my Drs with results going straight to the hospital as I live a fair distance from the hospital. I'm glad I should still have access to the advice line 😀

[Beechwood1]

Hi Cat-E, It sounds like you're just getting your head around your diagnosis. If you need any advice or help, the lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck 😉

[WilfDog]

Hi Cat-E I'm sorry you've been diagnosed with RA. Like others have said it can take many months to sort your meds out. A flare for me is when the inflammation rises significantly after being low and I feel very ill and have all-over body pain. Being early diagnosed it can take some time to get your medication right and is definitely trial and error.

I've had sJIA since the age of 5, diagnosed in 1973, therefore I have significant damage due to many flare-ups, and tried all the DMARDS under the sun, before going onto a biologic in 2008, which improved matters, although I still had flare-ups but not on a persistent basis, which was a huge improvement.

I now take doterra lifelong vitality supplements since 2017 and they have made a big difference to my inflammation, as well as my sleep I also take their essential oils for infections, but I've been given the ok by my consultant to do so. My inflammation hasn't disappeared aas I was diagnosed with Ankylosing Spondylitis about five years ago, but they have significantly improved. I'm still on prednisolone low dose, and etanercept, the biologic.

If you are finding things too difficult I would ring up your rheumatologist and ask how long you should wait until you can try something else.

Make sure you include movement and regular exercises into your day. This is very important to keep the muscle strong around the joints which protects them, causing less pain. I have massive damage, but always do my exercises which make a huge difference to my strength and flexibility. Also, tai chi is a great exercise to do. Ask your rheumatologist to refer you to the physio for some targeted exercises. Regular walks each day. It doesn't have to be massive, just regular exercise.

Hope you find some stability soon with your RA. x