I would really welcome some advice on how to deal with my first major flare. I was diagnosed last May with atypical PMR at age 51. Quick summary: didn't respond at first on 20mg Pred. Eventually raised to 30mg which after some time has worked to manage the pain and symptoms. By Jan this year ESR and CRP were both normal (they for me have always given a very accurate picture of the pain I'm in) and I was pretty much 100% pain free. Gradually tapering down with very little problem. was down to 11mg with no problem and then down to 10mg for a month with no problem. Around 4-6 weeks ago I started noticing a bit of stiffness in my back (I have had back issues for last 10 years and regularly see osteopath), so presumed it was just my normal muscular pain. Then I had sore glute muscle and v gradually my whole back/neck/shoulders etc have got sorer and stiffer... at the time I just presumed it was a general muscular problem and it didn't occur to me it could be a flare. Now with hindsight I see that this all started happening at the time that COVID/lock down was happening. My life has changed dramatically over the last 6 weeks. I have two 12/14 year old daughters now living/home schooling full time at home (I had been at boarding school), plus dog/large house/garden etc plus working 3 full days. So instead of being able to take things relatively easy and rest with PMR, I am now rushed off my feet with constant cooking, tidying, cleaning, washing, ironing, gardening, home schooling, walking dog etc plus working 3 full days at home, yet alone the worrying of it all and how to get online deliveries, no longer able to get help from cleaner/gardener etc. Girls do what they can, but they are v busy with their school work etc. Obvs far too much of a shock for my poor body which meant that by last THursday I could hardly get out of bed with all the awful PMR symptoms back with a vengeance and the penny dropped that I am now having a bad flare. I had been on 10mg pred (for 4 weeks with no problems). On Friday and Saturday, I went up to 12 - no relief. On Sunday I went up to 15mg.. which I've been on since then. Again, no relief and pain even worse this morning. What to do?! Should I go up even further?? How much to and for how long? I feel I am run ragged at the moment with no let up for the forseable future but we are in exceptional times and I know others in same boat. Just such a shame as I had been doing so well before all this happened. Would really welcome any advice please on what dose to take to try and control flare, and for how long, and then how to taper down. Very grateful to everyone who takes time to read this and respond.
Help with a flare please!: I would really welcome... - PMRGCAuk
Help with a flare please!
Hi,
Sorry to hear about flare - but no real surprise considering the change in lifestyle and stress that’s brought to the table.
I would be inclined to try 20mg for 5 days - hopefully enough to sort things. Sometimes people can then drop back to just above previous dose, but I would suggest a couple of steps in your case - perhaps 15mg for a couple of weeks, then 12.5mg again fir at least 2 weeks - and take that as your new dose. Don’t think about tapering again until you are sure you have symptoms back under control.
Just because your markers were okay doesn’t mean illness has gone - just means inflammation is controlled - so symptoms always are the key! Plus you’re only a year into illness - so still active.
Take care....I saw something which said......”we are all in the same ocean, but that doesn’t mean we’re all in the same boat”.
Thanks so much for your very helpful reply and advice re what level of pred I should be taking... I will follow this and fingers crossed get everything back under control
Lets hope so ....and I know it]s not easy particularly at this time with children at home...but they are old enough to help. If they are usually at boarding school then they are used to doing a certain amount of household duties, so get them involved - don't stress too much about home schooling per se, this is a good time to teach them other life skills.
I know they are in the teenage years, my son's are same age - a boy and a girl - but ignore the tantrums - and catch them in a "good" moment and you'll be surprised how much they are willing to do.
Plus they are old enough to know you are not feeling 100% and therefore need a bit of support at times.
Dear DorsetLady, Further to your very helpful reply, I went back up to 20mg as you suggested, which took several days to have any effect, but eventually it helped with the stiffness and pain during the day, but not the evenings/nights. After a week, I managed to get a call with my Rheumy Consultant who is v good. He suggested staying at 20mg for 2 weeks, and then tapering down to 17.5 for 2 weeks, then 15 for 2 weeks. The two weeks runs out tomorrow. So far, the stiffness/pain has got much better during the day and evening, but I am still v stiff and sore first thing from about 4am and find it hard to manoeuvre out of bed and I still find I'm absolutely exhausted during the day, despite having drastically reduced the household/childcare chores etc. Before this flare, from at least January to end of March I was slowly tapering down and was pain free 100% of the time.. so to still have severe stiffness in the morning is annoying! Do you think I should start to taper from tomorrow, or should i continue with the 20 mg for another week to see if it improves things any further? The only other thing to add is that I do have quite severe side effects from being on 20mg (as is the case any other time I've been up this high)... v light headed, constant heart thumping , and a general feeling of being completely out of things and spaced out.. luckily I'm not having to drive anywhere at the moment as I don't think I could safely! So half of me thinks I should start to taper down to get rid of these side effects and I should just put up with the early morning stiffness.... but the other half worries that I might be tapering too early and should stay on 20mg for a bit longer to get this flare fully under control. Grateful for any advice you could give.. Many thanks
I would be inclined to stay at 20mg for at least another week, maybe two.
Sometimes we do recommend when people are suffering in the morning to try splitting their dose taking approx 2/3rd morning- 1/3rd in evening. The evening dose then helps when the cytokines that cause the early morning pains are shed by the body. They do that around 4am - so that’s why you are having problems at that time.
It might be worth trying - it doesn’t suit everyone - but sometimes you have to try something different.
I know the side effects can be upsetting and sometimes frightening and frustrating - but if you taper too quickly you’ll just end up yo-yoing your dose and that will end up making things worse.
Hope this helps.
Thank your DorsetLady for replying so quickly and for such helpful advice. I will now stay on 20 for another week and see how things go - and try splitting it if necessary. Am very grateful for you help,
Hi,your markers should be "normal" because the pred is doing its job. Flaring during reduction is basically a warning that PMR is still active and you went past the perfect dose at this stage. I tend to ignore my markers and treat the symptoms only. I am lucky that they follow my symptoms quite well. I was at g for about 8mths and flared...did a 10mg week then returned to 7mg instead of 6mg. Still up and down like a lot of people at the moment....at 6 it 7mg there's not much sloshing around for stressful events. 🥴
I'm not sure that this is "just" PMR - it sounds like a back muscle spasm set-up, possibly associated with myofascial pain syndrome (it sounds exactly like what happens to me if I ignore it). You don't have access to the necessary though - hum. The last time that happened to me I took 800mg ibuprofen and sat against a hot water bottle on the worst bits until the muscles started to un-spasm. It happens to me at irregular intervals and can be anything from ouch to "I can't move". Even at its worse the ibuprofen and heat and sitting bolt upright to reduce the pain has achieved relief in a few days.
Now I'm sorry - but whatever you think, boarding school does NOT mean they spend 24/7 on school work. So that can apply at home too. There is a great deal your girls could help with that might let your back recover. The garden will still be there next month, by which time your gardener may be able to return - in fact, surely they can work already if they are outside. And dust is very patient, it always waits. I CAN'T use a vacuum for more than 5 minutes without ending up in the state you describe. After nearly 2 years, I had just found a new cleaner when Covid-19 happened and that was that. Oh well - I shall continue to wait for the dust bunnies...
PMR itself requires a new mind set - and with Covid-19 on top you may find a lot of things have to go by the board. It isn't the end of the world but you are going to set priorities at different levels.
I agree with DorsetLady of course. I have also raised two daughters and really think that you could require more of two big girls. Sit them down and explain about the difficulties this disease presents, appeal to their budding maturity and together set up a rota of tasks. Especially on your working days - when you shouldn’t have to do anything else at all. Don’t try to be the wall to wall Mum you’ve always been. This is an equally important part of their education. Try it, you may have a delightful surprise - even if you have a door slammer.
You won’t get better without pacing and rest, with the best will in the world. Good luck!
At 12 and 14, your kids are capable of running the vacuum, dusting, doing laundry, doing at least meal prep if not actually cooking (time to supervise them in cooking), scrubbing the toilet and tub, "tidying", walking the dog, digging in the dirt (again, under supervision so the weeds go and the flowers stay)...There's still plenty of time in the day and night for studying...It's long past time that they learned how to take care of themselves and anyone else who comes along...
And what the heck are you ironing?
I hope they persuade the teenagers that is "a good way to exercise". They might be willing to give it a try then. If you "expect it of them" they'll revolt.
Never really had that problem in my house. Kids would sometimes ask to be excused or to have the jobs rescheduled because there was something else they wanted to do, but otherwise did what was assigned, and did it as well as their skills allowed.
Then again, kids started "helping" around the house as toddlers.
So did my son - "helping round the house as a toddler" and just carried on. My daughter was always noticed by her absence when asked to do any housework.
When "ducking out" was attempted, it was followed by an assignment to clean the oven, wash windows, or some other labor intensive, odious task.
I had a friend with 2 small boys. When she became a single mother and full-time teacher, the boys were taught to do their own laundry. I could envisage teaching them to use a European automatic - bless, them, they were better at the US machines that I was!!!
I agree with the others that helping you out is as educational as homework. These are exceptional circumstances. You could all set aside the same time for tasks the three of you can share - they will have their suggestions - and of course they can listen to their favourite music at the same time, or perhaps you could all share that! 😀
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