Tapering and Dealing with a Flareup

Hi, I’m confused as to what constitutes a flare. If it’s aches and pains then that seems to be the norm as your body adjusts. I think that no aches and pains when tapering, and when eventually off prednisone, is not possible. As long as it’s not like full blown PMR, I am not sure it is a flare. Anybody help with a definition of a flare? Thank you 🙂

Hi, I’m confused as to what constitutes a flare. If it’s aches and pains then that seems to be the norm as your body adjusts. I think that no aches and pains when tapering, and when eventually off prednisone, is not possible. As long as it’s not like full blown PMR, I am not sure it is a flare. Anybody help with a definition of a flare? Thank you 🙂

I wasn't sure what a flare was till I had one. My usual slight aches after each reduction had always resolved within a week or so, followed by a couple of weeks of being ache and pain free till the next reduction. A small early evening dose (split dose) meant I had zero pain at any time, including mornings.

Then one time the aches didn't resolve before the next reduction was due and I knew something was different, but the aches were minor, so I reduced another .5mg. Then the aches became minor pain, not just stiffness and aches, and over a few weeks the pain went from 1-2/10 to 5-6/10, and I rang the doctor to say I was having a flare. It couldn't be left any longer by then - doorknobs were hard to open, I couldn't lift things any more, and it was getting worse. Blood tests confirmed that inflammation had risen again. That's a flare.

But in some cases, there are no bloodwork markers. Am one of those. Nothing showed up on all my bloodwork. But my age, the symptoms and X-rays concluded it was indeed PMR. Nothing helped the pain and stiffness … aspirin, ibuprofen and Tylenol arthritis strength. Stiffness and pain only responsive to Prednisone. In my case, bloodwork would not identify if I was flaring.

I am so discouraged! I started at 8 mg Medrol (methylprednisolone) and was encouraged to taper and I got down to 1 mg with a few aches and pains. Aterward, I stopped medicating and within three days had a terrible flare. I went back up to 4 mg and now trying to take 2 mg with some aches. I am not sure how much I am supposed to take with a flare and again how to taper. I did make a doctor appointment to discuss. I just do not get it. Why am I bothering to get down to no medication when my body goes into a terrible flare. I am so discouraged!

Good question ... what a flare is to one person isn't a flare to another person. This stems from the misconception that we should be "pain free." Nobody ever promised me that my life would be pain free just because I took Prednisone. It isn't helpful when people increase their Prednisone dose for "niggles" of pain when another intervention would be better.

Another problem is when something hurts for "no apparent reason." People like to call it a PMR flare or somehow related to PMR. Prednisone is very effective at relieving all kinds of pain and not just PMR pain. When the pain is relieved with Prednisone, it reinforces the idea that it must be a "PMR flare" or somehow caused by PMR. I did this even though the pain was not at all similar to the pain I felt when PMR was diagnosed.

I would increase my Prednisone dose and say it was PMR related. I did this even when I was presented with evidence to the contrary. I had osteoarthritis everywhere they looked and I still think it is autoimmune related. I miss prednisone because it made my osteoarthritis feel better than it does now. I won't take prednisone again because I now accept the fact that I have osteoarthritis.

Thanks @dadcue - that really helps me as it sounds familiar. I saw lots of people increasing their dose or going back on for a week or two and I worried about that for two reasons. First, you have to get the inflammation down but second, if it is nothing like full blown PMR then that’s dangerous territory. It’s a very dangerous drug but of course is the only thing that works for the real PMR. As noted, we are nearly all getting on in years when we get this so it’s hard to separate aging stiffness from what might be a flare. I’ve avoided taking anything other than Panadol 3 times in the last six months when it was needed to move without fear of aches and stiffness at a funeral and when travelling. Otherwise I’ve found that as hard as it is to get going some days exercise is the best medicine, if you can manage it. It helps osteoarthritis, which I have, although mildly. I guess it’s a personal choice but I listen to my GP. Markers are completely normal. When I was in agony they weren’t. So, for me, blood markers are the key. My husbands aunt had it in her 70’s and lived to 100. That was even after they gave her a ridiculously high dose at first of 60mg (now the standard is 15mg) and caused her to have a mini heart attack. As I say, it’s not a drug to play with at all.

I’m so thankful for all the responses as I can now trust my own instincts, as others have done.

I think trusting your own instincts is the best you can do. I don't think there is any exact way to know if anyone is having a PMR flare or not. I know there are many things that hurt just as much if not more than PMR. I also know prednisone will relieve symptoms of things that aren't PMR. That was my personal experience.

It is easier for me to say this now because I'm off prednisone and my pain is tolerable. I'm still being treated for PMR but not with prednisone. I'm now aware of medical problems I have that aren't PMR so I still have pain. When PMR was part of the equation, I didn't know about some of the other problems I have. There was also pain caused by my body trying to adjust to a low dose of Prednisone that wasn't PMR but still hurt.

When I had to cope with intolerable pain --- something needed to be done. The pain mostly happened in spite of my best attempts to taper slowly off prednisone. I could only tolerate so much pain. Lacking information to the contrary, I had to assume it was a PMR flare. Many times it was just my guess because I didn't call my rheumatologist every time that it happened. My rheumatologist could have evaluated me, ordered labs and other tests and it would have been better than my guess.

My main concern is about people on the internet who give medical advice and undermine the medical advice people receive from their doctors. People have said my rheumatologist is an idiot and I should take more Prednisone. I didn't need any help and support to take more Prednisone. Taking more Prednisone is the easy and popular thing to do. Tapering off Prednisone was much more difficult for me than increasing my dose.

Yes I agree that prednisone masks other problems. I’ve been off since last November and I a, slowly getting less stiffness and only a few aches at night. I just saw my GP and asked him about the ‘going on and off’ when you feel aches and pains and he said that recent research says that doing so has long term detrimental effects, including, but not limited to, permanent adrenal insufficiency.

But in some cases, there are no bloodwork markers. Am one of those. Nothing showed up on all my bloodwork. But my age, the symptoms and X-rays concluded it was indeed PMR. Nothing helped the pain and stiffness … aspirin, ibuprofen and Tylenol arthritis strength. Stiffness and pain only responsive to Prednisone. In my case, bloodwork would not identify if I was flaring.