Hi, I’m new to here as diagnosed with PMR just five days ago, I was prescribed Prednisone 15mg daily, a few hours after first dose the pain in my shoulders and arms reduced greatly, the following day was such a difference, feeling great and managing to sleep, yesterday pain started to slowly appear again, this morning my shoulders, arms & wrist was really painful, the pain didn’t disappear until about 6 hours after taking medication, is this normal in early days, I have been signed off my work for a few weeks as was really struggling walking with hip pain, ( I am a Cook and standing all day) I said I might manage back to work next week but I am now thinking it might be too early, should I be able to go back now or best to wait a wee while to make sure symptoms are under control,I don’t want to put myself back
Thanks
Tilian
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Tilian
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Hi and welcome to the site that no-one ever wants to come to.
With PMR you are in for a long haul and need to get a handle on it asap.
Go to the Frequently Asked Questions FAQ's) right hand side of the page and read up all you can - knowledge is power. Then come back and ask away.
It is early days and if the 15mg is not working to give you at least 70% pain relief, you need to talk to your GP as the starting does is 15%-20mg and it sounds like 15mg is not doing it for you. The aim is to get the initial inflammation control, as Pred is not a cure, it is to enable you to live as comfortably as possible till it decides to go into remission.
Please take the time to read.
When you say cook, would a perching stool be possible?
Going to give you a couple of links to read - first is intro post - bit scary first off, but please stick with it….and then CAB advice about working with PMR - your employers do need to support you -
As first link explains you have a serious systemic illness, not a matter of taking the medication and everything it’s tickity boo I’m afraid…it needs care management and pacing..not easy in your job I appreciate.
The fact that you got a good response initially, but now it’s beginning to lessen may mean you need a little bit more than 15mg, or you are assuming everything is back to normal…it’s not. At the beginning, the meds needs to mop up the accumulated inflammation and deal with the new daily amount, so it’s having to do a lot of work…so you need to give it time.
Other members who are still working will be along shortly to advise…
Think your reply to PMRpro has given you a clue - too much in one go - walk the dog or clean the cupboards but not both -. certainly not at the beginning of your journey. Once things are under control -maybe 😉
Hi and welcome! I haven't much to add to the first two posts, do read the FAQs and then ask about anything you don't understand.
And I have to ask: what did you do as soon as you felt better? Being on pred doesn't mean you are back to normal, whatever your doctor may have suggested! Pred isn't a cure, it is a management strategy for the inflammation which is what causes the symptoms. Your body is still being attacked by the autoimmune part of the illness which is still chugging along in the background - it's a bit like having flu on a permanent basis. Could you go back and work normally with real flu?
Hi,thanks for your reply, all I did was walk the dog which I have struggled to do for weeks and clean a couple of kitchen cupboard,I didn’t walk far but think I went too far, I have been taking it easier today
Hello Titian. What time do you take your pred? Many people find that taking it at 2 - 3am makes a difference. The inflammatory substances called cytokines are released in the body around 4am so the pred has already started working by then the pain is usually under control by getting up time. Worth a try! 🌻
Tilian has only just been diagnosed, so early days it’s better to take it the morning as recommended…in this case it may not be sufficient or there is too much activity to control symptoms. That really needs to be addressed before changing medication timings.
Although we do sometimes suggest taking Pred as 2am for some people as you point out, it best to follow the usual recommendation at the beginning. Swapping and changing so early in diagnosis may muddy the waters.
These stories may give you an idea of what it is like to live with a chronic illness. On the plus side, if we have to have an autoimmune condition, PMR is the best of a bad lot. There's a medication which helps us, and it doesn't kill us! Once the medication has done its job and you are able to taper slowly to a lower maintenance dose you will likely really feel better. But right now, it's time to be a bit of a precious princess and look after yourself.
Good morning Tilian, nothing much to add to the previous posts, so welcome to the site and just add that as well as our own "night owls" we have members across the continents so there is usually someone around to listen or "chat" at all times of the day or night. Take care and rest.
Hi Tilian. So sorry that you've had to join our group but welcome! Oh, I know that hip pain - couldn't get out of the car as my hips had seized-up so much. It does get better, give it a chance. Every 'body' is different and we all 'heal' at different rates so don't judge yourself against others.
My advice to all newbies is: Kate Gilberts book on the subject: amazon.co.uk/Polymyalgia-Rh... You read it first and then give it to your whole family to read, they need to know what you're going through.
Join the charity pmrgca.org.uk/ They are a font of information plus they have set up groups in various counties which will give you an opportunity to talk to people who will be able to help you - talking in itself helps so please try these. These groups have been conducted by zoom over the past year but I don't know how long they will continue to do so. They also set up talks, via zoom, given by professionals.
I've found all these things to be extremely helpful.
As most people will tell you, please be aware of GCA. That's also explained in Kate's book.
One of the best bits of advice I came across, via one of the charity's talks given by Dr Saravanan. He said that: 'We don't know how or why people get this; we don't know how to cure it; we just know that if we throw a lot of steroids at the immune system the autoimmune system goes back to normal!' On the surface of things that may not sound too good but at least he was honest. He also said that he listens to what each patient has to say as (and I've already said this but it can't be stressed too much) every 'body' is different. Your journey won't be the same as others. So listen to your body.
I was put on 15mg when first diagnosed which seems to be the "one size fits all" starting point. However, like you, 15mg made little difference and eventually had to go to 25mg before full pain relief. Once the pain was under control I was able to reduce the Pred slowly but surely and now, a year later, I'm down to 10mg and, thankfully, not experienced any flares but the tricky part starts anytime now,
Grab the few weeks off work - you will need it. 6 hours is a really good result. Perhaps put your mind to designing a way that you can continue working. A perching stool is a great idea, with wheels perhaps. I am not sure if you work for a big organisation or a small one. If it’s big perhaps you could discuss with your HR people a way of designing your job so that you can avoid the bending and lifting - all the heavy aspects basically. If you have staff then more delegation and supervision. If it’s a small operation then maybe equipment and gadgets could help? Possibly storing heavy pans differently. It would be a shame to lose your career but it has to be said, many of us have had to give in in the end and take early retirement. This disease can last for several years, picking up unwanted companions ( Co-morbidities) along the way. Perhaps you could write a low carb cook book for people with our diseases?💕You really have to pace activities, building in plenty of rest periods. Browse the FAQs this is really quite a disabling disease for most people. (PMR GCA/LVV 6 years and counting). X
I, too, found that the prednisone didn’t work for 5-6 hours after I took it. I always felt great by the afternoons/evening, but I hated “wasting” my day. So, I started putting a little snack on my bedside table (1/2 banana, cube of cheese) and eating that and taking prednisone at about 2:00 am ( natural bathroom visit). I wake in the mornings with no stiffness, and very little pain. I’m lucky - it hasn’t ruined my sleep. Good luck.
Good morning Tilian,I m Ruth,I m a full time live in housekeeper/cook and general dog’s body!haha.
You say your a cook,is it like me for a private couple?or a Restaurant?
As this makes a big difference for you regarding what you can have in a kitchen to rest on,I mean a chair?
In my case I cannot do that here.
Do you have a staff room that you can go to for a rest and break away from the kitchen?
I ve had pmr for about 3 years now,plus a lower spine problem,I ve had 2 operation s on it,and might have to have another one sometime soon.
Do you have any spinal problems?
As my pmr run s along side my spine problems and causes major pain,it never goes away.
And working makes it worse for me everyday.
I start work here at the Hall at 8am until 5 with two small breaks during that time,as I m the main cook ,I have to prepare lunch and go back in at about 4:30 to lay up the table and get dinner ready for them.as you can see my hrs are long and I get very tired during the day.
For me I would love to be able to work part time but that isn’t an option,as my accommodation goes with my job,and I don’t own my own home.
I know this is more like a letter,but please get in touch with me,and then I may be able to support you further.
You must rest when your body tells you to.
If you can go part time,standing and walking for me are the worst thing ever for both my pmr and spine problems,I can sit down to rest,I can t lay down on a bed it makes things worse for me.
Sorry to go on.
I m here for more advice if you feel I can help you further
Hi thanks for your reply, I am a cook in a Care Home, I have a domestic in with me so they do the dishes, I start at 8.45 until 5.15pm, I have 2 breaks but I tend to take them together to give me longer to sit down,I make 2 choices plus 2 puddings at lunchtime, 2 choices for teatime and baking for all the teas in between,it is pretty hectic, but not a problem if you’re not in painTilian
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