A question about flarest: On the whole, do you only... - PMRGCAuk

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A question about flarest

braininjurythepits profile image

On the whole, do you only experience flares when you’re tapering, but not when you’re on the dose that has been controlling the symptoms?

Diagnosed Sept 2018

10-9mg, currently on 10mg

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braininjurythepits profile image
braininjurythepits
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15 Replies
Marijo1951 profile image
Marijo1951

I had two bad flares, with a return of GCA symptoms, when I was trying to taper to 25 mg. I was prescribed methotrexate the second time and was okay subsequently. I'm now in the throes of what I'd describe as a minor flare, i.e. greatly increased fatigue plus malaise, but I've been on 10 mg since October, so this flare can't be connected to tapering.

Hindags profile image
Hindags in reply to Marijo1951

Though it is unlikely at 10mgs, if for some reason you aren't getting your full 10mgs, not absorbing the full dose, you could also be experiencing some adrenal insufficiency. Your symptoms sound more like that to me; you mention primarily malaise and fatigue not pain.

How long has this been going on? Is there anything else amiss?

Marijo1951 profile image
Marijo1951 in reply to Hindags

It started just over 3 weeks ago and came on very suddenly. I've been on 10 mg since October and felt remarkably well during a lot of that time. I'm seeing my rheumy next week. Maybe she'll have some good advice but, of course, she'll want me to start reducing to single figures as a priority...

Sheilamac profile image
Sheilamac in reply to Marijo1951

Sounds as if you need a bit more Pred, not less

Marijo1951 profile image
Marijo1951 in reply to Sheilamac

Possibly. Well, we'll see how it goes. I'm actually starting to feel a bit better, but that might just be the psychological boost of this early Spring weather...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

A flare just means the dose you are on isn’t controlling the symptoms. That can happen after a reduction, or sometimes if you have done too much or something is causing you stress so the level that previously was controlling thing isn’t anymore. Can also be if the dose you are on is only just enough or maybe just below and has allowed the inflammation to build up again.

One analogy is like a bowl or bucket filling up with water from a dripping tap - you don’t notice the problem initially or maybe for a few weeks even, until the water reaches the top of the bucket and overflows!

Then you need to take action.

SheffieldJane profile image
SheffieldJane

Illness and stress can trigger one too.

Angiejnz profile image
Angiejnz

From the queen of flares, they can bite your bum at the slightest provocation whether it be doing too much, tapering, stress or for sheer fun of making us miserable. Just up the preds to put jack back in the box and start again. Good luck (I'm a slow learner so have lots of ups and downs, usually doing too much and not learning to pace myself)🤣

PMRpro profile image
PMRproAmbassador

No - not for me. I flare in terms of disease activity flaring, I don't think I have ever flared as a result of reduction. Mainly, it has to be said, that is because I don't allow a flare to establish by going too low, as soon as it is obvious it isn't going to work I stick where I have been perfectly OK. I do reduce very slowly - I stick at any dose for several weeks.

And I feel as if I'm flaring if I have an extended period of stress that requires more activity/responsibility on my part. I don't know if that is increased disease activity in the same way though.

aladymo profile image
aladymo in reply to PMRpro

Do you increase if you’re under stress?

PMRpro profile image
PMRproAmbassador in reply to aladymo

Not usually - I go by how I feel and would probably call in at my rheumatologist's clinic to ask what he thought. The main effect is the fatigue caused partly by having to do much more than usual - which could be said to be due to being unfit!

aladymo profile image
aladymo in reply to PMRpro

I’ll call office today. My mother is in palliative care , I am about to fly out ( 5 hours away). Feeling pretty stiff and sore last few days. Thanks for info.

PMRpro profile image
PMRproAmbassador in reply to aladymo

If you are feeling it - you probably DO need more. And you are travelling. Plus visiting in a hospital environment really takes it out of you - I speak from experience!

Noosat profile image
Noosat

I had a flare because it was my birthday and I atr a lot of birthday cake at 2 different parties. Normally I am not a "sweets' eater. Checked and found sugar can be the main cause of flare up. So it was not the medication. I went up on prednisone for a couple of days until pain reduced.

nuigini profile image
nuigini

From what I understand the disease itself can flare regardless of your current dose or status of reduction.

Life is complicated with PMR/GCA. It's like a jigsaw with many pieces and the picture itself can change on you.

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