Relapse vs flare

[Vqueen]

Hi, I have GPA. Two years ago I reached remission with rituximab prednisone and now on azathioprine. I've been feeling not quite right for a little and have bloods done every 4 weeks to keep an eye on me. I had a phonecall from my rheumatology nurse the other day saying my inflammatory markers are raised and looks like I'm having a flare and I'm to receive a phonecall Tuesday from my consultant with a plan of action.My question is are a flare and relapse the same thing or is a flare not as serious?

[yogarita1955]

hi a flare is vasculitis coming back so must be sorted out

I have GPA and from time to time I feel horrible but sometimes sleep seems to bring me round you are lucky thay look after you and keep a check on your progress doing an anchor test mine just look at my blood test

I have been 3 years with vasculitis and exercise diet and sleep are essential good luck

[stuc]

Hi Vqueen

A flare and relapse are the same thing

I was diagnosed with GPA in 2017

After initial treatment and stabilisation I have gone on to have had 3 flares since then.

My rheumatologist has been excellent and quick to respond following my blood results and I have had a round of rituximab with each flare to bring this back under control

Unfortunately this means you are no longer in remission but it is so important to keep this disease under control rather than ignore it

I hope all goes well

S

[guineapignot]

hi

As my consultant continually reminds me we are all different and altho there are similarities it all is down to how you are really feeling . My bloods rarely give the consultant much of a clue… that’s her words not mine and therfor I need to describe exactly how I am feeling , what are all the symptoms I am experiencing ,when it started etc As they are obviously keeping an eye on you that is really good . I would not concern myself too much at this stage. Talk with them in lay terms and no matter how simple the question .. ask !! They have usually the answers. Good luck . A

[Grizzly-bear]

There's some emerging suggestions from rheumatologists now that being on rituximab for a few years can lead to better longer term outcomes and overall reduced flares. I've been on rituximab for 18 months since diagnosis and still get what I call grumbles rather than flares (my nose might be a bit sore for a week or one of my joints hurts for a little while) but it tends to sort itself out without any additional action from me.

If your markers are raised they should be looking at rituximab if it worked for you in the past to keep the disease under control.

[Vqueen]

Thanks all, I've just not been feeling right. Joints hurting, breathlessness, nose bleeds, stomach upsets, exhaustion. Fingers crossed they can get me feeling abit human again. Hope you're all doing OK 👍

[JGM1]

I’m going through this now with EGPA and I have had to battle to get doctors to listen to me . I’m under various departments not just Rheumatolgy and most notably a clinical trial via Respiratory where I receive Benralizumab .

I stopped Methotrexate after 5 years in Feb this year and felt great , better than ever until April when I noticed the old symptoms returning . Sinuses worsened, gastro problems , joint pains splinter haemorrhages , skin nodules etc .

I’m always told to report my issues asap , so I did. Only to be told I’m not in relapse and they tried to find alternative reasons for all of the individual symptoms instead of joining the dots as was done for diagnosis .

As I suspected things have got worse and deteriorating and I am in a lot of pain all the time and ended up in A&E on Monday . Despite this I had to be very firm and insist they listen to me as I am now experiencing all the same symptoms as before diagnosis just before it be came very serious .

It took this stance to finally get some action and all now agree that this is a flare/relapse ( to answer the post it is the same thing ). The respiratory team apologised to me but I still can’t see a Rheumatolgy consultant for nearly 2 weeks .. They have agreed an interim plan of prednisolone again though as a stop gap until I see them and likely end up back on MTX .

Good luck with yours I hope you don’t have to fight for the treatment as I have .