I know this may seem like a daft question to some of you experienced PMR sufferers but when you say flare, does this mean returning to the days of chronic pain in the shoulders, groin and wherever or is it just some pain has returned and if this is the case, to what degree?
For example. I no longer have chronic pain since being prescribed prednisone but I do have some aching in my arms/shoulder and hands in the mornings especially, but it is tolerable and does not stop me from walking the dog etc but does it just mean it's worse than my current condition and the feelings I have now?
Thank you
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Markandevie
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Not a silly question at all... this link gives a general idea... but it can vary from person to person, and is very individual.. .. and I always think it a good idea to go by the time symptoms start to appear [as in number of days, not time of day]
Would say yours sounds like body waiting until the pred takes affect...what time do you take it? .. guessing you haven't recently reduced as new, but are you more active than first couple of weeks into treatment. .... and you might need a tad more Pred, so don't let it get any more intense before you seek medical advice - and maybe re-read my intro post I sent in reply to your first post..
Plain tablets take about an hour or so... but the inflammation starts building up around 4am when the chemical substances that cause it are released. So some take their tablets if they wake at night for comfort break around 2-3am.. or consider splitting dose 2/3rd am, 1/3rd before bed - so there is some in your system first thing in morning.
HiI take pred at 3am and it really has helped me. As I say I have aches but then again I was aching when takings 20mg a day so nothing has got worse in the past 2 months. I just wanted to know if a flare means that my symptoms are worse ie pain returning. Tbf I really don't bother with aching as it does not affect me only the ridiculous weak strength I have now compared to pre July this year and before pmr.
if a flare means that my symptoms are worse ie pain returning.
A flare usually indicates that you have gone below the dose that your illnesses need to control the inflammation [hence pain]... the problem is if you are on too low a dose, then the symptoms will increase. The idea is as you taper is to have the same degree of relief you had at initial dose... some people get 100% relief, some don't.
I keep a diary and note morning (I have morning stiffness before Pred kicks in) and evening (it returns for me mid evening) and what activities I have been doing. I can see if there is a pattern of gradual worsening of symptoms so I can on it if need be. Or if things are going well.
Tapering is another matter. I have found I have pain from day 2 through to 6. Again my diary has helped me judge if it’s a flare building up or steroid withdrawal (I get it even reducing tiny steps from 15mg). Using a diary has really helped see the overall picture.
Maybe the thing to do is to up your dose as if it were a flare and see if the stiffness goes. I was getting very slowly more and more stiff and started having trouble getting out of the car, or standing up after a period on the sofa. I have upped my dose by 5mg now and feel so much better. It crept on me so slowly I hadn't realised, not just how stiff I was getting but also how tired and unwell I was feeling.
Now I intend to drop back down to 2mg (I was on 1 and a half) after this weekend which is very hectic, and see if I'm OK. I'll have been on 7 and a half mg for 10 days.
A flare is when your symptoms worsen even when you are not decreasing your dose. This is different then steroid withdrawal (short term pain during the first week you are decreasing your dose) and different from overshooting your dose (decreasing beyond the level of prednisone your body needs to manage inflammation). I have only had one flare… when I had my first covid jab. My symptoms returned full force and I had to up my dose to 9mg from 3mg maybe? It took me 3 months to reduce back down to where I was. A lot of people here say they are having a flare when really what they mean is they let their dose get too low for their symptoms. It may be semantics but it helps to understand when the right terminology is used.
When I overshoot my dose, generally I will start to feel mild symptoms in some of the same places as my original pain (like my neck, or knees or groin/hips) or occasionally in my arms and fingers. It usually shows up overnight and while my morning dose will help, that wears off and the pain returns. I will return my dose to the last one where I was pain-free and stay there a few weeks. Sometimes when reducing, you may experience pain for the first few days as your body adjusts. That is steroid withdrawal and normal. If those aches and pains persist past a week or two, then you most likely have overshot your dose and need more prednisone.
Well put. I wish Rheumatologists could see it that way. In my experience they view any increase in Pred dose as a flare and an excuse to add another drug, most commonly Methotrexate.
I was offered or asked to go on methotrexate but I said no. I have enough drugs in my system with the steroids and methotrexate would only make me stress more that what I do already.
Bear in mind that if the antiinflammatory effect of pred is at the low end of the range for you (12 to 36 hours) then the symptoms are likely to reappear in the morning when the new batch of inflammatory substances is shed in the body and may increase until the next dose of pred takes effect.
Shuffling the time or splitting the dose may improve the mornings - but everyone is different and you do have to experiment a bit.
I’ve been on predisone since October 2020, never had pain in shoulders etc, but great tiredness in the hip area. I started at 20mg, am now at 3 1/2mg tapering very slowly, I believe the adrenal glans take a while to catch up. After very busy periods I become extra tired and slow right down to allow my body to catch up, I do not go back up with my dose. I believe in slow tapering, and self regulate at my doctor’s agreement, the best way to go. Good luck.
further to my comment earlier I wonder why you take your prednisone at 3.00 am? That would surely be interfering with your sleep….. I’ve always taken mine between 8 and 9am, with my breakfast and a glass of water. I tend to weaken and tire towards the end of the day around 4 to 5pm.
Taking prednisone at 2am and rednisolone at 3am is considered the ideal for optimum management of morning stiffness and other symptoms. A study found that it leads to the highest level of steroid in the blood by 4-4.30am which is when the inflammatory substances are shed in the body. They are never able to cause the inflammation so that results in reduced symptoms. Most people seem to manage to wake, take the tablet and turn over and get back to sleep.
I think GCA is more likely to give more aches, stiffness and pain than PMR in the hip area. My case must be mild and hopefully going into remission, my previous doctor was excellent and extremely supportive, my new one is much less experienced in this field I’m afraid but still supportive.
I bow to all you PMR ambassadors, you are all very supportive and knowledgeable, thank you.
"I think GCA is more likely to give more aches, stiffness and pain than PMR in the hip area. "
I'm confused as to what makes you think that. Many GCA patients never have any PMR symptoms at all and GCA often only creates problems in the head area, LVV (large vessel vasculitis) may cause symptoms in the trunk and hips but PMR is the primary culprit.
OK, I get it! My other “half” would empathize! Myself I frequently have difficulty returning to sleep in tne wee small hours. I think you suffer more if it’s GCA rather than PMR, myself it’s the hip area that’s the problem.
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