Flare?? : On rituximab,,, had 3 or 4 treatments. Felt... - NRAS

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Flare??

28maggie11 profile image
16 Replies

On rituximab,,, had 3 or 4 treatments. Felt 3 months in that it was not working. Reaumy thinks it was a flare so going to try again in January. I thought you only flared if you had an infection. Help please

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28maggie11
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16 Replies
Hessie5 profile image
Hessie5

Hi - I am on a biologic but still experience the random flare. It could be from something I ate to perhaps wearing the wrong shoes. It impacts my ankle or could even be my hand or elbow. I try not to stress to exacerbate things. If unbearable I would pop a paracetamol - usually by next day things are better. I don't think it is limited to just infections. Wishing you well - Hessie

AgedCrone profile image
AgedCrone in reply toHessie5

Quite agree Hessie...I reckon if a drug suits you 95% of the time.....stick with it.....the next one might only work 55%!

oldtimer profile image
oldtimer

Flares can come out of the blue or be triggered by almost anything - some people can identify their triggers, others find that they seem quite random.

There was a thread on here recently about stress triggering a flare and that seemed common to many people -if you put flare or stress into the search box, it would probably come up.

Other people find that specific foods can be a trigger, as can changes in hormone levels.

If you feel up to the necessary meticulous effort, it is sometimes worth recording the likely triggers (stress, infection, changes in temperature, atmospheric pressure, etc) but unless you already have some idea, it is likely to be hard work!

AgedCrone profile image
AgedCrone

Hi Maggie ... Do you mean you have had 6 or 8 infusions - 6 months apart.....so you have been on it 3/4 years?

I find with Rtx it doesn’t always lyce the cells at the same speed if they only go slowly you can get a bit of inflammation. which usually settles down after the next infusion.

Mine lyced too fast once & I felt a bit fluey......nothing dramatic....& haven’t had any problems since.

If I do get a few aches & pains ......On my rheumy’s advice I take Naproxen for a few days.

If it is generally working for you I’d stick with it if I were you.

I don’t think any drug is “perfect “, but it’s the best I’ve tried in 20 years & my fingers are firmly crossed it stays that way.

28maggie11 profile image
28maggie11

Thank you after 4 years I am still coming to terms with this ra

28maggie11 profile image
28maggie11

3 times I have had infusions. Fingers crossed for number 4

CarolyneJA profile image
CarolyneJA

I am on it and methotrexate.Occasionally have a flare and take tapering course of prednisone. No known reason for my occasional flares.

Brushwork profile image
Brushwork

Sorry, but I thought the point of the biologics is that they stop Flares

AgedCrone profile image
AgedCrone in reply toBrushwork

If only!

Brushwork profile image
Brushwork in reply toAgedCrone

The aim of the rheumatology medication is to stop inflammation i.e. disease control, if that is achieved then flares should not happen. If flares happen the medication is not effective and should be reviewed. This is specified in the NICE guidelines for treating RA. This is also quoted as the aim of Rheumatologists.

Troygirl profile image
Troygirl in reply toBrushwork

EXACTLY!!

AgedCrone profile image
AgedCrone

It would be lovely if RD’s obeyed the NICE guidelines wouldn’t it?

But from what I read here we all react to Steroids, Dmards & Biologics In completely different ways.......hence NICE has guidelines not Rules.

Unfortunately RDs are not like a malignancy you can cut out & it gets better.

Of course our Rheumatologists aim to control the disease,......but what suits one person will be useless to another......so they have a really difficult job.

In my experience it’s a waiting game whilst our doctors do the tests & choose the meds they think suitable to give relief to each individual- BUT....

I took Mtx very successfully for 7 years, thought I was “all set” - then virtually overnight it stopped working.....now on new drugs I have very few flares....but not everyone is so lucky.

It is very stressful....& apart from accepting it can take time to find drugs that help.... the disease changes overtime......sometimes for the better...sometimes not.

All we can do is have patience, look after ourselves by eating healthily, & trying to keep stress levels low......and hope we have a caring & competent Rheumatologist to diagnose which treatment may help each one of us.

28maggie11 profile image
28maggie11

Thanks to all

Troygirl profile image
Troygirl

I have been in a wrist and hand FLARE for almost 12 long painful months! How the heck can that even be!

Tried Humira and even brought out the big guns, IV infusion Actemra! Nothing has worked. Plus sooooooo fatigued all the time! Sleep my weekends away.

I cannot take it much longer! Every single day for a year without high doses of prednisone and Motrin 800 I would never be able to make it to work.

Going back to the beginning and Trying antibiotic treatment. Don't know if it is working, because the past three days the wrist & hand flare has been at its worse and has been brutal. They say it can take up to 6 months! Five more months of this constant pain will really not be good. Ready to jump off the bridge.

I go back to RA dr tomorrow. At my wits end.

daisychains58 profile image
daisychains58 in reply toTroygirl

My wrists were so painful for about 6 months. I only yake presnolone and pain killers.

I tried medical cannabis and within a week my wrists were almost normal. Been taking for a momth now and have done more in w weeks than 2 years.

Im in Australia. By end of January of CRP still elevated and im no better rheumatologist said he'd giv me biologics to try. So far its working like a miracle cure..sleeping well too.

MrsMoff profile image
MrsMoff

The reason I love this platform is the advice given. I've been suffering the first flare since I started meds a year ago but reading the feedback about stress causing flares makes sense to me tonight. The last three weeks have been full on for me so that may be my trigger. I had actually forgotten how debilitating the pain was. I have been so lucky this last year. I hope it passes for xmas. Hope your flare passes quickly too x

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