a flare up?

[Tealblue2]

after some advice please…

I was diagnosed with RA nearly a year ago, but have had symptoms for over 5 years.

Am now on methotrexate and salophazine and have been since February. They are now tapering down the prednisone by 1mg every two weeks.

today I feel like I have been hit by a bus. My hands are swollen, as are my knees and I’m exhausted.

is this a flare? Will it pass? I’m currently half way through the 2 weeks stage of 3mg a day. Do I persevere? Do I call the rheumatologist nurse?

I can’t go back to where I was - I work full time and am a single mum. I haven’t felt like this since December, when they took me off the prednisone and I was knocked and very ill.

any advice would be gratefully received- thank you!!

[3LittleBirds2]

Hi Tealblue

It does sound very much like a flare ..poor you, it depends how long it will last. Sounds like you need to talk your Rheumatologist if it continues before your next appointment as you may need your medication tweaked as it could be the Pred keeping you under control rather than the RA medication? Best wishes, be kind to yourself and try to rest if you can..flares are horrible! X

[Tealblue2 in reply to 3LittleBirds2]

Thank you!

[Tealblue2 in reply to Tealblue2]

Can I ask? I also seem to have a lump developing on my finger as well as suddenly very blurry vision today? Can that also be attributed to a flare?

I really appreciate the help!

[3LittleBirds2 in reply to Tealblue2]

Ooh I'm not sure it could be an inflammation bump, does it look like a bite? I know my knuckles look very lumpy and that is down to inflammation..if you're concerned at all please ring 111 to get some advice even if you can get some reassurance before your contact your Rheumatologist. as it is the BH tomorrow ..if you can wait ring them on Tuesday? I hope it settles down for you x

[KittyJ in reply to Tealblue2]

You can get RA nodules, I’ve got them on my hands, of course they may be something else entirely but I’d contact your rheumy team for advice. I’d also get medical advice if you’ve got sudden blurry vision, don’t assume it’s to do with RA in case it’s something that needs treatment, better safe than sorry. Let us know how you get on.

[Tealblue2 in reply to KittyJ]

Thank you!

Can you still get nodules if RA is under control?

I’ll contact Rheumatologist on Tuesday x

[KittyJ in reply to Tealblue2]

Here’s some info

nras.org.uk/resource/rheuma...

[Tealblue2 in reply to KittyJ]

Thank you so much. The help is truly appreciated

[KittyJ in reply to Tealblue2]

You’re welcome 😊

[wilbertjellyfish]

Definitely best to speak to rheumy nurses. It could be a flare or your adrenal gland may be "sleepy" (when you're on steroids awhile the adrenal gland can become less active, then when you cut the steroids it takes a while to get active again).

If I was you I'd put the pred up again by 1mg to see if it helps but I'm not your doctor.

Your doing brilliantly working and parenting, I understand how hard this is and I have a partner round to help.

[Tealblue2 in reply to wilbertjellyfish]

Thank you so much. It’s such a relief to have somewhere to turn and people to ask

[sylvi]

Contact your rheumy team darling. Hugs. xxxx

[Tealblue2 in reply to sylvi]

Thank you. The help is truly appreciated

[ruth_p]

It sounds like the mtx and sulfa aren’t doing the job well enough and the reduction in steroids is bringing all the symptoms out. Call the rheumatology nurse and tell them, it might mean you have to taper even slower than 1mg every two weeks. Get some help and don’t suffer in silence, if you don’t tell them they won’t know anything is wrong.

[Sapphire1701]

Hi tealblue,

Sorry to hear you are struggling right now, I completely empathise with that ‘I’ve been hit by a bus’ feeling as I’m sure so many do here. This disease is so unpredictable and every day something different comes along

Others here are far more experienced with symptoms flares etc.. as I was only diagnosed 18 months ago, so relatively new like you. Though it definitely sounds like it’s worth talking to your rheumy team. I’m a single mum too, and work (although currently on long term sick but not directly due to RA.. my work is toxic) so I do have some understanding just how incredibly hard this is.

I feel fortunate that I’ve now started on biologic which has been huge change for me, though I still flare particularly with hormone fluctuations (I’m perimenopausal) and stress.

I really hope you are able to get some relief soon and can talk to the nurses. Sending hugs too xxx

[Tealblue2 in reply to Sapphire1701]

Thank you!

Yes I’m pretty sure hormones are making this a lot harder. They seem to be playing havoc with each other - the RA and menopause seem to be in competition 😂

I do feel so relieved to have access to people who have been through this and can help, guide, advice or even just say been there done that. It’s been so long that I’ve been doing this on my own.

Thank you x

[Sapphire1701 in reply to Tealblue2]

Ah bless you.. yes hormones definitely play a part, both my consultant and the speciality nurses have said to me it’s an unfortunate link between the two (with no solution,.🤷🏻‍♀️)

This forum has helped me so much, when like you, just feeling completely alone with it all. I have felt alone pretty much the whole time too, it really is so tough.

So come here whenever you need, we’re all here for you x

[1ChLoE]

Hi I think this might be the result of trying to taper your steroids too quickly. I felt very similar to you when I was tapering my steroids. There is information on here about how to very slowly taper your steroids. Once you start lowering your steroids below 5 mgs, it is very difficult. I have managed to stop my steroids with very very slow stop method. Also it’s a good idea to get in touch with your rheumatology team.

[virtualreality]

Hi, sorry to hear you're struggling at the moment, that's rough especially with everything you have on your plate.

As others have said, it could be a flare but it could also be that your current meds aren't controlling your RA well enough and as you taper down the steroids this is becoming more evident.

On the other hand, if you've been prescribed steroids for some time - even since you were diagnosed - tapering the dose by 1mg every two weeks might well be too fast (especially if it's 1mg off your daily dose each fortnight, that sounds VERY fast to me). I've been stuck on prednisolone since I was diagnosed with RA 2.5 years ago, and am needing to decrease my total WEEKLY dose by 1mg each month. That is very slow (and by no means would everyone need to do this), but just to give an example of how gradual a steroid taper might need to be to minimise significant symptoms during the process. When I tapered too fast it caused a lot of problems for me.

I hope your rheumatology team can re-assess the situation with you and hopefully make some adjustments, and that things get easier for you very soon.