Hi all. What a year - moved house in Feb and had a flare d- that was coped with very easily - upped by 5mg for a week then 2 days each 1mg reduction down to 2. All was well until June - end of June daughter in law died and son had a breakdown - got him to the crisis team asap who were brill and his gp put him on meds and when they kicked in he was fine and back at work. He'd been with us and I'd worked hard with him to rationalise his thoughts. That leaves me - I was fine for a month or so then I began to feel a few aches I ignored the first feelings of stiffness - thinking it's all that might have been lurking there camouflaged by the pred. But it isn't/wasn't. I I went up to 7mg and stayed there for a week. All fine and dandy just like my very first dose back in 2017. Did the week then began the 2 days at each dose reduction. I'm now on 4 but .........yeah - the pain is starting again in my thighs and hips. I don't want to yo-yo so what can our experts suggest as a way forward by way of reducing........thanks so much in advance. I guess my PMR is definitely stress related. Problem is the PMR is the only symptom I get that I'm stressed! I just get on and cope with the situations I'm faced with.
Bloomin' flare....How to decrease pred? - PMRGCAuk
Bloomin' flare....How to decrease pred?
Hi there, what a year, to put it mildly. Nightmare I’d say. The problem is “getting on and coping with the situations I’m faced with”. However, sometimes you have no choice and I daresay it’s not exactly smooth yet or it’s an uneasy truce with life for now. If it were me I’d be looking at weeks of slow reducing after an increase, not a quick nip it in the bud dose and a fairly nifty drop. Your stress is prob simmering and your adrenal function may also need time to sort itself out. What does your doc think?
Thanks Snazzy, you're probably right. Doc in Sheffield just let me get on with it - thought I was getting more expert info on here than he could offer so I just a got a call every couple of months. Since moving here I haven't needed the doc so not had an appointment with them - and haven't a clue how au fait they are with PMR! I just get my repeat prescriptions every month! Perhaps I'll give them a call!
It’s luck of the draw isn’t it? The frustrating thing about your dose levels is that you are at the point where you are challenging the adrenals to work and the only way to do that is reduce. Going back up even to 7mg may undo what you’ve achieved and make them dozy again. BUT, if you’re having and flare and your system is being challenged by stress the adrenal project probably needs to go on the back burner due to an almighty spanner in the works courtesy of Life.
So far I didn't seem to have any struggles with the adrenals - I've been on 5mg and less for about 2 years - but I guess the stress can mess with them at the moment. Just went up to 7 for a week 10 days ago....
“Just went up to 7 for a week 10 days ago....
So how were you at 7mg? And what are you on now?
If 7mg seemed enough - not just enough, but properly enough, then as jinasc suggests go back to that, if it wasn’t, maybe 7.5 or even 8mg.
Disappointed as you may be, there has been a lot of stress recently, so you need to get things back under control. From whatever dose you go to, then slow taper, whichever suits. - helps the illness and the adrenals.
Hi DL, 7 was fine, great in fact. Like the very first dose of 30 mg! I was in France and that's what I was prescribed 😏 I've been doing your paper since 2018....I have had a couple of small flares on the way dow. One earlier this year and one back in 2018 I think. Both those sorted with the +5mg for a week then reducing back to the dose I was at quite quickly. Finished this dose of 7mg last week....all fine on 2nd day of taking that dose...but today first dose of 4mg and I knew it wasn't enough.Prior to this flare I'd been pain free.
Okay, well maybe another few days back at 7mg to gain control again, (if you can)….but then 6mg for 5-7 days, then 5mg for 2-3 weeks before commencing slow taper.
Obviously the step down to 4mg was too much (if you’re sure is a flare and not steroid withdrawal).
Using a slower taper you shouldn’t have been subject to steroid withdrawal (that's the main aim) - so maybe you aren’t sure what it is……
SW usually comes in immediately, flare can take 3-4 days or even longer.
With what’s gone on recently I would err on the side of caution….better to get it sorted properly or you’ll just keep on yo-yoing…..
Thanks DL I'm sure it was a flare to start with, it'd been creeping up on me for a while, but I kind of refused to accept that's what it was! Got quite a stash of pred luckily. Docs appointment for next week but not sure what I'll find .....asked if they had one versed in PMR but as they kept on calling it polymyalgia....I told them to just put PMR....I'm not holding my breath on that one! I'll do 7 for another week I think....then go down as you suggest.....and if anyone else in the family has a crisis in the near future!!!!!
I totally agree with Snazzy's advice about slower reductions by small amounts. This should avoid the yo-yo effect.I understand your natural instinct and desire to look after your son in his distress. You did a great job and battled on ignoring your own well-being but that's what mums do and you were rewarded by your son's improvement.
I hope you have a pleasant surprise when you speak to your new doctor but if not, you still have the huge benefit of our 'experts' knowledge and advice.
I wish you well.
Take a look in the FAQ' section at the tapering plans, DSNS or DL's and then go back to 7mg, where you felt OK and work down from there......
Tortoise won the race 😉
I am so sorry that you have been through such a heartbreaking and challenging time and have shouldered the weight as it is in your nature to do. I would return to 5 mgs and see if your symptoms settle. Take care of yourself now.
Thanks SJ...I'm going for 7 again to clear it out first.....get down to 6,5 for a few weeks and hopefully from there DSNS...again. It's a bummer when you get down really low and WHAM you're back to where you were....in this case 3 years ago exactly I was DSNSing it down from 7 for the first time 😏
I know! I was on 3 mgs for PMR when GCA was diagnosed. Good luck. Xx
It doesn't matter WHY you are flaring - you need what you need to manage it. I know exactly where you are coming from except I'm needing 15mg consistently and occasionally a bit more to keep what I call add-ons to PMR under wraps as well as the PMR itself.
There is a subtle difference between a flare from overshooting slightly and a flare because something has tickled the autoimmune gorilla into life. In the first case you can sort it by clearing out the extra inflammation and going back to above where the flare happened. This stress thing is similar to the start where you have to identfy the dose you need NOW - not before the flare.
Thanks Pro, 7mg got it under control, but I guess I rushed down too quickly..in my often "I've got this thing licked" gung ho frame of mind. Have taken all the advice given here on board, which to be honest I really knew deep down.
Hello pMRPro.Am currently trying to cope with my first flare ever since being diagnosed with PMR over three years ago. Took four weeks to get an appointment with my GP so I upped my Pred dose myself - I have been on 2mg quite happily for months until flare. Am currently in 10mg but symptoms still hanging around although improving. Presume I just keep on raising the dose until the pain stops (then do slow tapering). Is that right? Just checking. It’s definitely PMR symptoms - bilateral pain in arms and wrists.
At that sort of level you really need to speak to someone - and a 4 week wait is totally unacceptable so I would be making my views known to the practice manager.
If this were a flare due to overshooting the dose while tapering it would be relatively simple and you are well covered by what you have done. This all sounds like a relapse - in the sense of an increase in disease activity. Then you can't assess what dose you need and the usual procedure would be to start over again and taper. It is possible that just 1 or 2mg more would be enough - but as usual the crystal ball isn't working!
We spent a lot of time during a research meeting a few months ago trying to explain to a bunch of rheumies that there are two sorts of flares while on pred: due to reducing too fast/too far and to an increase in disease activity. It was a struggle at first! Do you think there is anything that you can attribute it too? Stress does it for me but I've had a couple that just manifested with no identifiable reason.
Thank you for the response. I have only seen a Rheumie once and then to confirm I actually had PMR after three years. I may ring him to ask for advice as I told my GP what I had done this week, and she just listened. No further advice given except she will check me in two weeks. Rheumie may be a little more informative.
I wouldn't count on it!!!!
I'm so sorry to read of the loss of your daughter in law and your son's crisis. It's no wonder your PMR has flared. As the other replies say, you need as much pred as you need to gain back control, before you start to taper again - slowly.
Be as kind to yourself as you have been to your son. 💞
Thanks Rugger❤️
My flares are also triggered by stress so I really empathise. I don't realise until I end up in bed. Can't offer any advice but wishing you well. The AZ vaccines rendered my pred useless but I've been determined not to increase as I am so sensitive to the withdrawal it's the lesser of two evils. But I'm not reducing either at the moment. my drop to 7mg was surprisingly good and then AZ came along like a bat out of hell. And I mean a baseball bat. I live with my 92 year old mother and my brother. They don't half know how to push my buttons but I have to just realise and walk away. Unfortunately you did not have the option to do that here. Sending hugs and hope to you and yours.
Thanks Singer. I really feel for you, your life is far from easy. I had the AZ Vax and didn't feel much change at that time. End of June was when mine began to flare. 😏 I was convincing myself it was old age aches and pains....silly me. I should know better 4 years down the PMR trail! Look after yourself xx
I have flared 5 times in the last 3.5 years I’ve been on pred. 3 flares were from lowering my pred dose below 9mg (once I hit 8.5mg, even if it’s been a slow taper). Each time I used a “pred burst” consisting of 2 days at 11, 2 days at 10.5, 2 days at 10, 2 days at 9.5 and then I’d settle in at 9 again.
One flare occurred after a very emotionally charged conversation with my mom I had been estranged from for 20 years. Even though it was facilitated by a professionally, and the outcome was good, the process and feelings were stressful. With that flare I did a different pred burst that consisted of taking 5mg above my dose and then lowering it every 3 days by 1mg till I got back down to 10.
The last flare was from my body’s response when I got Covid (unknowingly) AND having my first dose of Moderna. At the advice of my GP I upped my dose to 12mg and stayed there for 2 weeks until all symptoms were gone, and then tapered back down to 9mg where I’ve been for 3 months now.
All this to say that the type and cause of flares sometimes require different strategies to address it. Lots of our responses are experimental in that we are not always sure if it will work. It means paying attention to our bodies and symptoms, and adjusting if necessary.
Eliminating stress altogether is not possible, however engaging in practices to reduce it is a worthwhile investment. I used to “stress” along with my adult children when they shared their challenges. Now I offer my support, listen, but try not yo absorb it all, and leave them to address it, instead of trying to “fix it”. Exercise and time away in peaceful settings helps me as well.
Sounds like you are experiencing flares from a number of sources (vaccine, living with elderly parent and brother, and perhaps tapering too fast or too much), and so your response to address the flares may take some tweaking to get a good result. Hopefully your new dr will be of some help. Even bloodwork you check your ESR and CRP May aid you in this journey (my markers are very accurate and we’ve even been able to predict an oncoming flare and avoid it by remaining at a certain dose instead of continuing to lower).
I feel for your situation and the resulting pain and stiffness. All you can do is try and find a dose that will relieve your symptoms and clear out the built up inflammation 7mg??). Like you said, no good to be yo-yoing up and down. Once the pain is addressed it will help with stress levels as we can focus better. I think I’d be staying at 7mg for a few weeks anyway and then begin to taper again. My GP advises me to aim for 5mg as it is considered a “low dose” with much fewer concerns.
Lastly be kind and patient with yourself. We face so much pressure to get off prednisone by others who don’t have PMR, therefore they don’t have to deal with the fallout of flares. Wise PMRPro reminded me earlier this year….”We need what we need.” Take good care, we are here for you!
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