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
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
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.
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?
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...
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.
Illness and stress can trigger one too.
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)🤣
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.
Do you increase if you’re under stress?
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!
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.
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.
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.