Tried to reduce from 15 to 14 pred, having been on it since early February.
My bodies having none of it. Woke up today after my usual 4 hours sleep to raging lower back pain, neck pain and slight jaw pain (yes I know about GCA).
Jaw only hurts on waking, not when chewing, so can only assume I have been grinding my teeth or clenching too tight in the night.
Something else to worry about now.
Does PMR sometimes attack different part of the body does anyone know?
Ive never had facial pain before or lower back pain really. My journey started off with awful neck, arm and leg pain.
Also getting lower leg cramps intermittently in the night.
I cant get hold of my Dr today, she's calling me tomorrow so I took it upon myself to up my dose back to 15.
Fed up doesnt even cover it.
If I have to reduce by .5 of a tablet, I assume Ill have this illness for years. Thats whats depressing me.
There will be lots of advice coming through today I'm sure.
My bit - You are still very early days into this thing and just because you cannot reduce now doesn't mean this will always be the case. This disease does wax and wane and sometimes it is far easier to reduce than other times.
It is quite common to get withdrawal pain when reducing too. I certainly get it. If it's immediate and responds somewhat to paracetamol it could be withdrawal' if it build up over time you've probably gone too low for now. It's a learning process for sure.
Alternatively' you may just need 15mg for a while longer.
Keep an eye on that jaw pain - there will some further advice on that coming along too.
Is that worth mentioning to the GP when they get in touch? I do know some folks here get muscular chest pain/costocondritis but it's good to be certain.
Hi. I'm sorry that you're feeling so low.Seems to me that that 15mg wasn't enough for your starting dose. Between 15mg and 25mg is recommended. You should have had much more relief by now. Never reduce while you're still feeling pain. You may well have PMR for a number of years: there is no cure but it can be managed well and with care until you eventually go into remission.
The painful jaw on waking is certainly a sign of jaw clenching/teeth grinding. You can buy a soft guard to help prevent this.
Leg cramps may be due to not drinking enough-water, that is. Avoid alcohol and caffeine some hours before bed.
Is your bed comfortable? A mattress topper can be very beneficial.
Are you cutting out or drastically reducing things in your diet that will cause inflammation in the body? - sugar, cakes, pastries: processed foods like bacon, ham, some ready meals? Are you eating lots of veg and low carb fruits?
Yes, PMR does cause pain in many parts of the body including, for some people, the hands, feet and knees.
Don't forget to write down all the questions you want to ask your GP. Many general practitioners have little knowledge of PMR so be on your guard and let us know how your appointment goes.
This is a brief reply as I have to be out early this morning but you'll receive other responses.
How were you on 15mg? Did that give you full relief from symptoms?
As Coffeebeans says such a reaction when decreasing only 1mg does indicate that your illness is not ready for you to reduce...and there could be a few reasons for that.
Leg cramps may be help by taking a magnesium supplement- but I think we could do with a bit more info on what’s gone in since diagnosis until now to give a better answer.
You might like to have a read of this - and as for having PMR for years, afraid that’s a given.....anything between 2-6, but it can be managed quite easily once you know how -
thank you everyone so far for replying. ill digest them all at the end of the day and add more information for you. and also message again tomorrow after GP has called.
theres obviously some v helpful info on here and very kind people that take the time to reply.
You will always get a reply... but it’s a world wide forum, and most responses will come from Europe- so just bear that timeline in mind when you ask a question...just because you don’t get an answer immediately doesn’t mean you won’t get one.
Beware what you wish for - some posts get hundreds of replies!!!!
Leg cramps - try magneium. Either as a supplement or it is also possible to get sprays/oil for topical use. Or Epsom salt footbaths also work.
But we need to know most about timeline and doses to really comment sensibly.
And above all - just because you are on pred doesn't mean you are cured and it isn't a pass to go back to your previous normal lifestyle. All it is doing is managing the inflammation and the actual disease is still chugging away in the background - leaving you feeling as if you have flu and your muscles are intolerant of acute exercise. But that I don't mean a run or game of tennis - I mean any activity that involves your muscles. You must learn your limits and stick to the, resting is as important as doing something when it comes to pacing:
Thanks. Diagnosed in early Feb, even though I had been suffering since before Christmas. To the point where I couldn't wipe myself when going to the loo because of arm pain, couldn't get out of bed easily, couldn't comb my hair, couldn't climb in the bath.
Dr put me on amitriptyline for nerve pain. Obv that didnt work so all this while the pmr was chugging along unaided.
Started me on 15mg early Feb which worked wonders for a couple of weeks, then it seemed to stabilise itself out, and a few pains came back, for the first few hours in the mornings. But I was managing with that.
Doc agreed with me to reduce to 14 about 2/3 weeks ago. This morning I felt like I was back to square 1.
Had a phone call with a rheumatologist who told me to reduce by 1mg every 4 weeks. Is he having a laugh?!!! Hes given me a blood test form for more tests that the doc didnt do. I will be getting that done this friday.
Doc calling me tomorrow and Im armed with lots of questions.
Rheumatologist spoke about putting me on something extra to help the pred work, but cant for the life of me remember the name of the medication. I know it started with a vowel. Not that thats much help! (brain fog)
At its height my inflammation markers were 69 and was told they should be under 7. Last I heard they were 12. Not sure what the test on friday will bring up.
Rheumatologist asked if Id ever smoked because a lung X-ray that I had done after a trip in an ambulance (thats another story) something showing on that. But the didnt elaborate, so will ask doc about that.
Trip in ambulance happened because doc told me to buy a blood pressure machine and I was concerned one morning that I couldn't get BP down past 185. By time they arrived it was 211.
Heart trace done in A&E, chest xray, bloods. All normal apart from the lung thing that noones spoken to me about in length. Was discharged as the BP came down.
What you need to know is this - and I know you're all going to rant at me!!! -- I have to do about 20 hours of childcare weekly, doing school runs, swimming drop offs and looking after a toddler 2 whole days.
Theres abs no other family that are still alive to do it, Im my family's main help. If I say I shouldn't be doing it, my daughter in law would have to leave her part time job and that wouldn't go down well.
Even though some days I dread getting up and doing it, it does keep me focused on something else apart from this illness.
Please be gentle in your replies. Im in a impossible situation.
I think you're receiving some really good advice already from many of the knowledgeable people on here. I just wanted to say that I can understand completely what an impossible situation you feel you're in and that nothing is probably likely to change because we all do what we need to do for our loved ones. No one will judge you here but please don't forget that if you run yourself into the ground you'll be no help to anyone. Sometimes you have to look for a compromise...and there ALWAYS is one if you discuss things fully. If you were hospitalised or even worse!....your DIL would have to cope. I feel very sad that you're in such an awful situation and wish you well in sorting everything out.
thank you Kendrew. Ive been reading your posts this morning and it reminded me slightly of when my son left home at 18. We were exceptionally close, me bringing him up on his own and I was abs devastated that he wanted to leave at such an early age. I found it was like a bereavement (similar to you having to leave your job) and I had to make a completely new life for myself. It was very difficult having no family support. But I did it. I joined a church and made some nice friends but that ended after a few years when I decided it wasn't for me.
I also used to play table tennis which I abs loved and joined some walking groups.
Now Ive got the grandchildren to keep me amused.
I hope you find something that you feel passionate about when youre ready.
Thankyou.....and good sound advice. It does feel a bit like one of my purposes in life has been stolen away but life goes on and it's so encouraging to read other people's stories of similar experiences. Please don't forget to take good care of yourself.
I'm going to gentle as I can on you, but not your DIL - you are in a difficult situation, but you have a serious systemic illness, just because she can't see it, doesnt mean it isn't there!
If you had a heart attack or stroke or even a broken leg would she still expect you to be her main helper.
Sorry, but you have to put yourself first in this scenario, certainly for the moment.
my son looked up Polymyalgia online and told me that he gets aches and pains after going to the gym and that I was making a fuss. thats what Im up against.
Sorry to hear that.....and of course at the end of the day you have to live with things and I'm not in your shoes, but you are not doing yourself any favours by continuing as you are. Do you not have anybody sensible who can support you and explain to son & DIL.
Some children are not very good at realising their parents cannot do what they've always done.
thanks for replying but no theres no one. my family all passed away a long time ago. DIL,s mother died of cancer 2 years ago. Her fathers very ill. There is abs no one to help out with the kids. Most days I can cope but today having a bad pain day and just wish i could curl up on sofa but have to do school run and then take one of them swimming.
What do you do when your kids lead busy lives, are not bothered about yours, and have their head stuck in the sand when you tell them youre not well.
To make matters worse and make me feel guilty - as a thank you for all the childcare Ive done for them over the years, they surprised me with a holiday abroad with them too, just before xmas when it was ok to still travel.
I was in awful pain the whole time and having to mask it from them made it worse. (this was before I was properly diagnosed and I didnt even know what it was I was suffering from).
It must have cost them thousands. So I feel now that I owe them my time and mustnt complain.
Oh dear.....well I guess you have to do what you can - but don’t hide it from them—-I know we are all guilty of that - I’d be the first to hold my hand up!But it really doesn't help the long run.
But when you feel the need to let it off your chest- remember we are here and we do understand 🌸
Perhaps he needs to look on here. I find that a selfish, unpleasant and uninformed attitude - he needs to spend a day in your shoes. Apart from anything else, you are at least 20 years older than him - he may find out for himself one day. And discover that while many doctors think you take pred and everything is hunky dory, that really doesn't reflect the truth - and neither does their belief it is all over and done with in 2 years.
"What do you do when your kids lead busy lives, are not bothered about yours, and have their head stuck in the sand when you tell them youre not well."
You can try saying NO.
If it were me, I would agree to look after the children if I can and they are cooperative. But I would downright say no to running around with the after-school activities if it is too much - and it obviously is. You aren't the first to post the same problem on here and I hope the others will speak up if they are still on the forum.
I used to see older ladies where I used to live in the NE, pushing the buggy with a toddler in it when they could barely put one foot in front of the other. My daughter told me clearly that she would never ask me to look after the kids on a regular basis, that was what her child-minder was for. If one was ill so they couldn't go to Nikki. I did drive up in the morning to be there before work started - she is a nurse. I could cope with a few days of that - but even pre-PMR and a young grandmother I struggled with my grandson - he weighed so much I couldn't carry him around! Two hours of him and I was on my knees! By the time they were in school I was mid-50s and with undiagnosed PMR and crawling upstairs on hands and knees.
Was it azathioprine that was mentioned? It may make pred work better in some things - not much evidence it does in PMR but hey ho, he may have had good results with it and I have come across patients were it helped.
I suspect you have gone back to trying to do too much - if you must work you usually need more pred to cope, not less. But while I know what you are saying and we get people saying the same over and over again - as Kendrew says, if you run yourself into the ground, then you are no use to anyone and it is even potentially risky to the children if you can't react in an emergency. Pred has a lot of effects, including impairing your ability for decision making, large and small.
No-one is indispensible - and sometimes the hard decision turns out to be the right one for everyone in the end. The last thing your daughter in law would want or need is to end up with you and the children needing to be cared for.
I really want.to say that you must put yourselves first here.
I've been an avid gym goer and have had many days of Muscle soreness but that really doesn't compare PMR in terms of the pain or the associated feeling unwell and fatigue.
I brought my daughter up living away from all family so couldn't rely on any help. We used childcare' yes you have to pay but it's there. Perhaps it's a matter of the children go there a day or so and reduce the impact on you.
Remember you've done this once already with your children. The grandkids are their responsibility and I do hope you can make some arrangements that take the strain of you somewhat. That's what you need to feel better .
Just sending you hugs as you are getting good advice. You will always find help here and receive answers. I suffered from the issues you talk about but not constantly and at a lower level of Pred thru stopped. But this doesn’t mean you shouldn’t tell your doctor or rheumy as you may have some other problem! Personally I think you should say no, you are not well enough! If you did something simple like sprain an ankle and couldn’t drive you couldn’t help. Thru can’t just rely on you then need a plan B! Good luck S x
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