Hello community, I think what I've had is a very long flare. Is it possible for a flare last 2 to 3 months? Or it could be that I was too low on prednisone and it took 2 to 3 months on a higher dose to clear out the inflammation?
I reduced from 35mg to 25mg yesterday and today, and so far no headache. This is the first time I haven't had a headache with reducing, and it's a larger reduction. I plan to stay at 25mg for a month then hopefully reduce by 5mg for another month.
Any thoughts?
Yes, if a flare is caused by increased disease activity, it can last a long time, and need something higher for a dose to control than might have been needed for a while. I was at much lower dose than you are, but a couple of years ago I had a flare which needed a proportionately much higher dose than I'd taken for several years and it took several months before I could reliably taper and get back down to my old dose. Even longer before I was able, as I seem to be now, able to start tapering further. Hopefully you will be okay with your next taper. Remember the rule as you start to go lower, however. No more than 10% at a time!
Oh thank you. That's great to know. For some reason, I thought flares lasted only a week or two. I thought I could go down more quickly at that higher doses. At what dose does the 10% rule kick in? I really appreciate your response because I didn't know flares could last for months. Thank you.
As HeronNS says, if the PMR flares due to increased disease activity and you don't increase the pred dose enough it can take a while to get it under control.
The 10% rule should apply at any dose and 2.5mg twice with a couple of weeks between might be better. However - 35mg for "just" PMR is quite high.
Hi PMRpro, I thought you could reduce more quickly on higher dose. But I will heed your advice. Thank you so much. And yes, I think my disease activity was going crazy! Super severe symptoms--especially the GCA ones of head feeling like the top is going to blow up and temples feeling like they're going to burst.
I don't know how I would cope without this community. Thank you to all of you.
I thought you could reduce more quickly on higher dose
Not quite as simple as that - sometimes you can when you have more Pred sloshing around in your body than your illness requires on a daily basis (for example on much higher GCA doses or following an increase to counteract a flare) but it depends on how active the underlying illness is.
In your situation it seems to have been out of control for quite a while, so if you reduce too quickly you may find it rebounds again. Not what you want.
Yes, it was out of control for almost 3 months. Don't want that again.
Absolutely not what I want. Thank you so much. This disease is so confusing!
Yes, it's true that people say we can reduce much faster when increasing for a flare. When I tried that one time after tapering too fast it definitely worked. But the situation in early 2021 was much different and I needed a higher dose for longer. Also I coincidentally had bloodwork done around the same time and CRP was higher than it had ever been! AND I had been in denial for a while and putting the pain down to other causes. Context - struggling around 3 mg, and finally after trying the usual short term solutions I took 10 mg, and that was enough to get the pain rapidly under control, and for me to admit it really was PMR and to start behaving more sensibly. Currently tapering to 1 mg from 1.5, but be aware that I was at 2 mg this time last year and it's been about 30 months since the beginning of this "flare". Right now I feel it's adrenal sluggishness which is holding me back, and at this dosage I'm in no hurry. I had a lot of trouble tapering for a while, and somehow that seemed to get better after having my first Shingrix vaccination and I still wonder whether that did something positive to my immune system. Obviously it was no cure as I'm still here, but it certainly did no harm and may have been beneficial.
Whenever a person flares they need to consider why they are flaring. Did they taper too rapidly? Is something else in their life causing some extra stress, meaning they should probably not taper for a while even after the flare is controlled? Do they actually need more pred for the time being, maybe for several months, if the disease itself is being unusually active for any number of reasons, some remaining unknown?
Good luck to you, and let us know how you get on in the next little while.
Thank you so much for sharing your insight and experience. It' great you're down to 1mg, but I know the adrenal part is so hard. Yes, I went too low too fast and that kicked it off for me. But I was also dealing with a lot of stress which probably caused it too. Yes, good to think about what in my life was causing extra stress. That's wild about the shingles vaccine. I'm not supposed to get it until I'm on less steroids, as my doctor said they limit the vaccine's ability to work. Thanks again and best to you and your health.
Interesting. I suppose there's some truth to that. I just did a quick google and it does say any doses 20 mg and over might interfere.
I blame my PMR nearly completely on stress, although the stress must have had some physical vulnerability to work on.
Yeah, I agree. I had a super stressful couple of years that culminated in a bunch of stressful difficult weeks and months right before getting PMR and GCA. I think my body just couldn't take anymore. Maybe it was a way of forcing me to slow down and take a break.
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