Sorry to be posting so soon after my last post but I do rely on the advice from this forum so much. Trying to get sensible advice from my GP or Rheumatologist in a timely fashion is almost impossible.
Briefly I’m on day 4 of an increase from 8.5 mg Prednisolone to 13mg to deal with a flare. My intention is to increase for about 10-14 days then drop to 9mg. In the past when I’ve increased I quickly noticed an improvement in the pain and stiffness. That doesn’t appear to be happening this time and my arms and shoulders are aching terribly. I’ve tried paracetamol and rubbing in ibuprofen gel but nothing seems to be helping.
I’m panicking a bit because we are due to fly to the US for Christmas on Tuesday and I’m currently struggling to just walk around the house never mind packing suitcases. If a flare has got really bad can it take a week or more of increased Pred. before any relief is felt? I recall that a similar pain to PMR can be caused by Myofascial pain syndrome and I’m wondering whether I’ve got that as well. As always I would appreciate any advice, thank you, Tiggy70
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Well the fact that you are panicking probably isn't helping your PMR - neither is the cold weather ... and 4 days may not be long enough
Have copied my reply to previous post - and I would repeat similar - and if it is MPS then probably too late in day to see anyone about it - but there are exercise that may help - as does warmth. PMRpro will be along idc to explain what treatments help her.
"Hi,
i think you probably needed to stay at the increased dose of 13mg for longer...in line with advice in this link - I usually suggest 7-10 days but you can stay there for 14 days without prejudicing your drop back down -
Personally would start process again (sorry!).. and with all that's gone on in last few weeks/months this flare was never going to be as easy as previous ones to get under control.
Plus with travel (and stress) in the offing don't think you can pussyfoot about - you need decisive action...
Thank you. I know that I’m in panic mode at the moment and that’s not helping. I’m going to try applying heat and take a flooding dose of Ibuprofen as per PMRpro’s advice and see if that helps. 🌸
Try heat on the sore areas - and 800mg ibuprofen tablets taken with a meal at least once to see if it makes a difference, I find paracetamol useless. If the ibuprofen makes a difference then if you aren't on a PPI or something, get some OTC stomach protection (famotidine or cimetidine, Pepcid or Tagamet I think). I find 800mg lasts the best part of 24 hours so you aren't taking lots.
But what have you been doing recently? I also suspect the panic isn't helping. It can take a few days to get a result - and that isn't quite 5mg. Sounds picky I know but 1/2mg can make a difference at any level.
Thank you. I’ll try your suggestion of heat and Ibuprofen. I don’t think it could make me feel any worse than I’m feeling at the moment. Oh, and I’ll add in that extra half mg of Pred🥴.
It sounds like you might be trying to do too much (understandable thus time of year) but I've found making myself rest , keeping warm, maybe having nice bath with Epsom salts and good sleep all helps and can reduce the pain.
Hi, thank you for your advice. I am doing too much but can’t see a way out of it at present. We fly to the US on Tuesday to see our son and family for Christmas so it’s a bit of a rush getting ready. When I’m actually with my USA family I will be able to rest. Happy Christmas 🎄 🎅🏼 Tiggy 70
just been away for 3 weeks having a normal dose of 8mg increased to 15 mg for the duration then reduce by 1 mg alternative days and 2mg the rest it’s working for me
Hi. Did you increase because of a a flare or because of your trip? I’m glad the reduction is working for you. Three weeks was a long time to be on the higher dose. I worry that I won’t be able to drop back down fairly quickly and have to do a really slow taper. I’m currently going against my Rheumatologist’s instructions by increasing to 13mg when he’s told me to go no higher than 10mg but it’s my pain not his!
Is it in both arms?Have you been resting whilst trying to improve , or , as I suspect ( because everybody does it ) have you been panicking about the trip then getting up and down doing little bits and bobs to prepare for your trip because you don't want to leave it to the last minute?
If that is the case and your shoulder issues are not just PMR related but because of other types of inflammation , arthritis , over activity or nerve pain the increase in Pred and Paracetamol won't have had chance to improve your symptoms entirely . Stress and lack of complete rest for a few days will be like poking a bear with tooth ache.
I , personally, wouldn't go with an oral Ibuprofen or NSAID if I wasn't already used to using it , or had tried the combination before so close to a trip away , just because I couldn't guarantee that my stomach wouldn't also decide to join in the chaos at such an inappropriate time. But everyone is different so you need to see if the benefit outweighs the risk with your knowledge of how your body reacts to things.
I would consider increasing the dose of Paracetamol, depending on how high a dose you are already taking , and taking it regularly, along with heat pads , very few , very gentle stretches to prevent stiffness butting in , good hydration , no sugar and REST.
It might feel like that's impossible but if you have anyone else in your family whether they live at home or not ( O.H , siblings , child. , Grandchild etc.) push the emergency button and ask them to help you doing all the packing and prep . If they want to get away on your trip , and have you with them (without the need to carry you in a rucksack) they need to help in this way. Until trip day, despite the temptation to do it , your only role should be getting your body to the point it can travel and writing lists of jobs for other people to do .
Even putting out an SOS call to a friend or neighbour to do it for you . Yes , I know it's Christmas and last minute and you don't want to bother them but believe me as long as you have your list prepared to give them of , necessary , if not perfect , packing and prep jobs I'm sure they will be more than happy to give you a few hours help rather than seeing you struggle , get worse and potentially miss your trip.
At the moment , if the delay in your improvement isn't because of PMR but something else you have no time to find out exactly what is causing it to find the best treatment. If it's nerve pain as well as a PMR flare added antiinflammatories beyond steroids and paracetamol are unlikely to improve it anyway. If it's OA , or the various other possibilities , it's pacing that will help more than more painkillers because these need both recovery time and patience to show a big improvement.
It's Emergency Rules now , even if it means someone else has packed you bag and put in 30 pairs of socks and no pants , especially if you want to get on that plane. And a good 24hrs total rest , pampering and no partying , and no unpacking after your flight if you want to survive until Christmas !
Thank you so much for your post. You made me chuckle about the socks and no pants🤣. I feel pretty sure that there is more going on with me than solely a PMR flare. I do suffer with OA in my shoulders, hips and spine. Mostly of the aching is in my upper arms and shoulders and it’s bilateral. I expect some aching in my right shoulder as I’ve recently had rotator cuff surgery and then revision surgery due to complications. The aching seems to comes on waves during the day. Sometimes it eases when I move around other times it feels easier when I rest. Also my bicep muscles feel tight when the aching starts.
I’m fortunate in that I have a very supportive husband. He’s helped me to wrap a lot of the presents we are taking away (well the box shaped ones anyway!) and gets his own stuff together on the spare bed. I just have the job of getting it all in! I did most of the packing this afternoon so I’m about 90% ready. I’ll definitely take your advice about resting up when we get to our son’s. I’m not looking forward to the 7.5hr flight to New York. We then have a 4 hour wait before our internal flight to PA. I hope you have a lovely Christmas x 🎄🎄🎅🏼
You have requested airport assistance haven't you? In some airports that gets you into a lounge area for long stopovers if you are in a wheelchair. You can still ask at check-in if you didn't pre-request it, No guarantees but it has a lot of plus points - especially immigration queues ... And a guaranteed seat!
My husband tried to book some help in advance but that option wasn’t available (Heathrow). We are planning to ask when we check in. I don’t think I need a wheelchair but wouldn’t mind a lift on one of the ‘beeping’ buggies to the gate particularly if it’s one of the 20 minute walk gates.
No - you may not NEED a wheelchair but if one is offered - take it. It means you always have a seat! And at the other end, you will be taken through the immigration queue, not have to stand and queue. This end you will get through security in relative comfort too. I had heard people were booking assistance since Brexit etc ... Have you got a walking stick? Get a folding one and make use of it - no shrinking violet, I don't want to be a bother ...
Heathrow DOES have a bad reputation for making connections and as I say, it has been rumoured people who don't need it have been booking assistance. so they may have hidden it. It is the airline's responsibility though I think so check-in should work.
Thanks for the advice. I do have a folding walking stick from when I had my hip replaced 12 years ago. I’ll have to find it. If I can’t get assistance I’ll have to give myself more time to get to the gate.
LHR usually wheelchair you to lounge (if business class) or pickup point up for the buggies..they don’t push you all the way -unlike some other airports. Have to say I was rather embarrassed first time through Singapore when guy pushing me was definitely older than me! Although they do have buggies as well…
That’s one of the reasons I ditched going to NZ this year -flight prices! Hoping they will settle a bit by next Christmas and/or will have saved more (or won lottery🤣😂).
Actually have seen daughter -they came across in October to see her hubby’s dad -so worked out okay!
That’s good that you got to see your daughter. It’s nice to have proper hugs. My son has lived in the States since he was 19 (he went out on soccer scholarship). I’m quite used to going long periods without seeing him but I find it harder with my grandkids. They were 12 and 14 when Covid struck, now 15 and 17. They’ve changed from kids to adults. The 17yr old (Connor) is 6’3”, has a girlfriend and has been driving for 10 months! 🎄
Thanks, I’m so looking forward to it. It’s only the second time we will have seen our grandchildren in three years because of Covid! Happy Christmas, Tiggy70 x🎄
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