Hello world .
Just been told I have PMR . The pain on a night is horrific I use to think I had a high pain threshold un till last two months . Just started 15 mg prednisolone today . Hoping it helps . Any advise from anyone on the condition would be great
Thanks
Hello and welcome to the forum Hageman! You are lucky to have found us so quickly. We have so much information, experience and advice for you, it would come out in a great confusing torrent. Far better that you get to know and befriend your Pred. and ask your questions as they arise for you and the stage you are at.
For now, you need to be resting a lot and pacing light activities. You are ill with a significant, systemic disease. Pred will deal with the pain, stiffness and inflammation but you still have the disease which will run its course, possibly for several years. You should always take Pred with something like natural Greek yoghurt to protect your digestive system. Drugs like Omeprazole are often not needed, they are given routinely but bring potential problems. It is wise to move to a low carb, healthy diet, to combat the potential weight gain. You should be prescribed Calcium and Vit D and we add in Vit K for absorption, this is to protect your bones. Ask for a bone density scan ( DEXA) at the outset and before accepting drugs like Alendronic Acid, which may not be required and have significant side effects.
Come to us when you begin to taper your Pred dose. We have a lot of advice and experience. Some doctors have odd ideas about how fast and steeply this can be done.
Above all though, rest and get to know this community of amazing folk.
Thanks for the fast response been very lucky as massive pain only started about 2 months ago .. last a month then went to GP . Blood test ect should raised infamtory ..... so yesterday got the steroids.... resting up it not a option at the moment as self employed .... so its naproxen and 30/ 500 to help get the the day which are not to bad once I get going ... the night and early morning are the worse .....just have to see how it goes for this week if next blood test shows prednisone woring then looks like a year on steroids.
Naproxen and paracetalmol with codeine will not work on pmr pain. Pred is the only drug that works on it. Pred is the only drug that will het rid of the inflammation which is causing the pain in the first place. To work as self employed will.also not help.your condition if you are in a physical job. Rest is really the only way you can avoid flares of your condition along with the prednisilone.
A stomach protector is essential if you react to uncoated pred. You can get coated pred but a lot of doctors wont prescribe this because of cost. As sheffieldjane has said ask for a dexa scan asap which will idicate whether you need to take AA. The low carb diet is essential coming from someone who has put on over 2 stone because she didnt follow it at the start. There is tons of info in the pinned section but dont hesitate to ask any questions you have.
Yellowbluebell
Moderator
Thanks for the info still have a lot to learn low carb diet did not know that good job I like protein
I have found it hard because i love bread and potaoes and sugar!! Don't forget the fats.
I personally don't understand this cost argument. Prescribing gastro-resistant pred is very much cheaper than using the non-coated variety with a drug like omeprazole, which does not help everyone. I am lucky, my GP agreed to prescribe it coated when the omeprazole didn't help and it suits me fine.
It is not advisable to use naproxen, alongside Prednisalone as it is too harsh on the digestive system and could lead to very serious problems like internal bleeding. The right dose of Pred will take care of the pain and stiffness. Some patients wake up at 2 am to take Pred. This coincides with the body’s release of inflammatory substance ( cytokines) and can head the pain off before it begins, and give you a much better morning. I understand what you are saying about being self employed and I know we can be our own worst boss, but unless you pace yourself you are going to end up having to pack it in altogether ( seriously). A year on Pred is a fine ambition but it would be very rare for the remission to happen so soon. The better care you take of yourself etc ............
I know you don’t want to hear this stuff yet and you have that psychological process to go through ( that we all do) that leads to acceptance. Life is easier on the other side of that, trust me.
At least we have a disease that eventually burns out, so we have the hope, to keep us going.
This is meant very kindly.
Thank you I can take all the advise good or bad ... as only found out 24 hours ago ...
I do take a stomach protector Frist thing and only take naproxen with food .... was on naproxen before this pmr diagnosed so maybe gp will knock it off
Like Sheffieldjane has mentioned naproxen shouldnt be taken with pred. Stick to the paracetamol and codeine and ask your gp for advice on any other pain meds you can take should you need them once the pred is fully into your ststem. This can take from a few hours to a couple of weeks. Dont make the mistake most of us have made, by getting on with life as normal just because the pain goes. Pmr will punish you if you do.
You have a lot to take in and in the beginning its helpful to just take in all the forums details, basically read and digest. There is nearly always someone about even in the early hours. Good luck. YBB
Do you think you were given the naproxen for what is probably PMR pain? Or something else?
I was on naproxen for pain in my foot and supposed frozen shoulder
Which could both have been due to PMR - frozen shoulder is often the first opinion that then turns out to be PMR. I had foot pain quite early on.
Just reading post Jane and noticed that you said should not be taking pred with Naproxen. Few months ago had my first visit with unhelpful Ruemy and that is what he prescribed. Any information appreciated
Scroll down a bit PMRPro puts it very well as usual.
Hello and welcome ,
You will get lots of great advice here , but I just noticed a comment in your reply that will have sent a little alarm bell in the hearts of any one reading your post whom has had PMR for a while.
' resting is not an option at the moment as self employed'
It's totally understandable , especially if you are Self Employed that you do not want to , or do not feel that you can , take time off work , but you will need to make some big changes.
PMR is a Chronic Condition, the Steroids help manage the Pain and Inflammation , but it is unfortunately not a ' cure'.
At first , after experiencing such pain and getting into the Steroid Regime , you can feel a big boost and some people feel very quickly that they are back to their old selves again and try and crack on with activity by the ' Old Normal ' rules.
But , they learn quickly that living with PMR involves a ' New Normal ' .
We all need to learn to pace our activities and have a balance of rests between tasks.
If we try to continue without making some adjustments to add rest regularly into our daily schedule , we soon discover that the PMR will raise it's ugly head and send us on our sick beds again.
It can mean more time off work , more Pain and Fatigue , and a number of Flare episodes which mean we need to up the medication to cope .
So , learning to adapt and adjust is really important at the beginning so that you can continue with as much as you can cope with while PMR is around.
Look at your work routine , and work out a way to weave rests through your day .
Only do the work you need to not what you think you should.
If you have employees , work out which of your more active roles you can delegate to them , it will be great training for the future.
If you work alone , do not skip breaks or lunch , you are going to need them.
Don't take on extra work or extra tasks , overtime and extra long hours are not an option ,especially if your job is physical , and, especially while just beginning your treatment or on tapering weeks in the future.
If you are busy at work , don't also try and do all the domestic jobs at home too , you will cause a Flare of symptoms.
Pass the load around the Family in terms of chores , you may not want to , but you need to.
If you have a work day don't attempt to do household duties like cleaning or running around , or plan a social activity or physical sport when you get home, or you will pay for it for days afterwards and actually do less overall.
Be prepared , you won't be able to schedule as much into your day , and you may need to occasionally cancel things at the last minute , or say a polite No ! to friends or colleagues if a social thing clashes with your needs.
Being honest with friends, family and people you work with , at the beginning about what you have , how it can affect you and that you may not be able to give them as much help as before ( and may occasionally need help in the future) is the best tip you can get .
It prevents you from feeling the Stress or Pressure of feeling you are letting people down and because they know what is happening , and that you may have an ' invisible illness' but it is serious all the same, they will understand .
If they don't , that's their issue not yours.
Reducing Stress is very important , and learning not to ,' Sweat the Small Stuff', is also key to feeling better , as Stress causes Tension and Tension , Pain.
Acceptance and Adaption is key in the early days and getting a ' New Normal' routine is the most important thing you can do to help keep you on your feet and manage your symptoms.
Take care , it's a lot to get used to , but we are here to help if you need us.
Really good advice which I wish I had had at the beginning of my journey!
Wonderful and concise advise. When life gets in the way and I find myself doing too much physically ——- my goodness I pay for it........... unfortunately sometimes you just have to get on with it though. 😢
Yes ,that's when that Pacing does you good .
thanks for the info , but as for work its not as easy as resting up all all I have a morage to pay and bills , its just the way it is , I will have to adapt my way of working and life and just hope it works out
Yes , as I say I get it , Im not at retirement age , I'm only 48 and have two teenagers and a house to keep paying for , but just a mini rest for a few minutes each hour and making sure you have a break mid morning and afternoon and keep your lunch break will stop you Flaring up later and then having to take time off work .
Delegating those household jobs are going to be essential for you , and taking a proper rest in the evenings .
Unfortunately , the need to balance and Pace yourself will probably have more impact on your Social Activities if you work Full Time , so be aware , if you begin to feel low or frustrated you may need to make more adjustments to make sure that the PMR doesn't take it's Mental or Stress Toll on you.
A lot of us do "get" that - do you have an opportunity to have a good break at midday? I know it depends on the client as well as the employer - but if you are like all my P&Ds in the past you are a small business. And many people with chronic illnesses find a whole day of work with no break is killing. With a proper break they can manage the longer day it requires. Counter-intuitive maybe - but it may work.
As Yellowbell says, Naproxen and Tylenol 3 don’t do much to address PMR pain....I know because I took 1000mg of Naproxen a day for 5 months pre-diagnosis....hardly touched the pain and stiffness. My GP took me off of it as soon as I started pred.
Welcome to this informative forum filled with people who “get it” better than most folks who do not have a lived experience of PMR/GCA. I see many members have already responded with practical tips and support.
It is important to recognize how having a chronic illness can impact you beyond your body and physical symptoms. I had a hard time accepting this was my fate and I experienced many emotions such as fear, anger, and denial. With acceptance came peace and a focus on what I could control and change (diet, exercise, rest, whoI disclosed to and received support from, etc).
I will say I’ve lost 30 pounds and kept it off over a year now following a low carb/sugar/salt eating plan. I’ve also been able to stop taking high blood pressure medication. I’m enjoying many more physical activities than I did before PMR emerged, but I did build up my physical activity very slowly.
I do wish you a smooth ride moving forward. Become informed and advocate for your health. We’ll be right here if you need us!
I was diagnosed in September, started at 15mg, now at 9mg - difference is amazing! Get around 80% relief but that means I have my life back. Am sure things work for different people but initially I cut out tea, coffee and alcohol and tried to keep white carbs and dairy to a minimum. I drink green tea, aloe juice and cherry juice and have started introducing things back in my diet to see how I feel. Have also tried Bowen therapy and shiatsu massages and I see an osteopath every 2 weeks, all of which I think have helped. I definitely feel much more tired and stiff the few days after a reduction in dosage so really take it easy on those days and take an afternoon nap - great to have the chance to do that if you are not working.
I take my Pred in the morning , usually around 6am but can be 4.30 / 5 am in the days following a reduction as i tend to wake up earlier on those days. Did feel incredibly hungry while at 15mg but kept lots of fruit and celery in the house so no weight gain and no moon face! Am fortunate not to have had too many side effects although was light headed at 15mg but was also very anemic so could have been that. Am a veggie but have made changes to my diet to get more iron. If I could say just one thing it is to take care of yourself,
Again thank you good to get insites of other people . Had 15 mg this morning for Frist time and do feel a bit light headed . Other thankbthat ok
Please watch the fruit! Most fruit is high in sugar! And a lot of veg as well. Pmr doesnt make life easy!!
Hi Arflane97G, I just wondered how you have increased your iron intake... Leafy greens? What do you eat for protein? I have been veggie for 30years so always on the lookout for tips and tricks where iron etc concerned. 🌻
Leafy greens so kale and spinach, pulses including chickpeas, dark chocolate (!) in moderation and fortunately my cholesterol is fine so cheese and eggs.
I am lucky that I like my greens. I grew black kale this year so am still benefitting from that. My cholesterol isn't good and unfortunately my body seems to be going through a can't do dairy phase. I have started reintroducing some riper cheeses which seems easier on on my stomach. I am having some tahini in sauces or drizzle for stir fries and roast veg. Mixed with lemon juice it's tasty and better than nuts for protein and is a good source of calcium. Not in huge amounts though and I get proper tahini from the local middle Eastern food shop. Yum.
Please be very careful with taking Naproxen and pred at the same time - although doctors will say it is less hard on the stomach, less is not the same as not at all, and you are increasing the risk of stomach irritation and a possible gastric bleed since pred can also cause such problems. If you have any gastric symptoms stop taking the Naproxen and get to the doctor. More pred would be a safer option.
Oh dear - your GP obviously hasn't told you much about PMR have they? Pred doesn't cure PMR - it manages the symptoms caused by the inflammation that develops in response to an autoimmune disorder that causes your immune system to attack the body in error, thinking the body tissues are "foreign". It is a chronic illness and how long it will last is impossible to forecast. As long as it lasts you will need some pred to manage the symptoms and allow a decent quality of life. If you try to stop too soon or reduce too quickly the symptoms will be back.
I'm afraid though that this is where truth compels me to tell you the bad news - if this really is PMR you are definitely going to need pred for some time to come and a year is the absolute bottom end of the range and a duration of pred only 1 in 5 patients achieve. More are off pred by 2 years - but even then only a third of us.
I hear what you say about being self-employed - so was I but at least all I had to do was stagger to the computer in my home office! What sort of work do you do? If we know that maybe we can help with some suggestions.
Let's wait and see how you get on with 15mg - that is also the bottom end of the range and the latest recommendations suggest more, up to 25mg/day, is OK to start with. You won't stay at that dose, you willtaper to find the lowest dose that give the same result, but it is emerging that 15mg simply isn't enough at the start for a lot of people and doctors then misguidedly conclude it isn't PMR.
rheumatology.org/Portals/0/...
Recommendation 3.
I can also say quite emphatically that the NICE recommendation for tapering is in cloud cuckoo land! Especially for anyone who has to work with PMR as well as take pred.
Once you have settled down a bit I would suggest you try one of two things: either try taking the pred at night or split the dose into two taking part in the morning and part later in the day. Either of those approaches will improve your mornings which are obviously critical for you but first you need to find out if 15mg is enough - and rheumies are beginning to realise that the response to 15mg is rarely what they expected: only 8% of patients get a good result in a week and half still haven't had a good result at 3 weeks (see first paragraphs at the start of the second page, click on PDF at the left under the title to see the whole paper)
reumatismo.org/index.php/re...
The trouble with having to continue to work is that it will cloud your response to the pred - so don't let your GP give up too quickly and try more if 15mg isn't helping enough. You are looking for a 70% improvement overall - but that might mean total resolution of some things and little effect on others, at least initially. The actual disease is still going on in the background - it is like using Lemsip to make cold symptoms less irritating but the virus is still making you feel rubbish. My stiffness was gone in under 6 hours and I could walk and do stairs normally but it was weeks and weeks before the foot and hip pain eased.
Coming to realise it's going to be a long haul I am a painter and dectotor so fair bit of ladder work and above head work .... at the moment I get through the day just have to grit the teeth for fristv2 / 3 hours then it eases off ... as I said be for night time and morning are worse at the moment
A very difficult job if you have PMR. Try to rest as often as possible.
Ouch - shoulders! I couldn't have done that without pred. I can raise my arms now 24 hours a day. The optimum time to take pred for relief of morning stiffness is 2am. Obviously not everyone wants to wake then, they may struggle to get back to sleep, but you can adapt things a bit if that doesn't appeal to you to improve the mornings. Last thing before bed or 2 hours before you want to get up is also effective - the pred will be working by the time you get to work.
Hello Hageman, welcome to the club no-one really wants to join. We are a happy bunch (most of the time)😂. Can you let us know a little about yourself (age, sex, where you live, etc etc). We like to know who we are 'talking' to (put it all on your profile)
Any questions you have will be quickly answered as there is usually someone on the forum (day or night) as we have members all over the world.
All the best. Constance
Thanks have up dated Male 55 painter decorator
What country are you in? Even within the UK it makes a difference to what is best advice!
Can you get an apprentice and teach her/ him about ceilings and skirting boards?
And nocturnal ones like me!!
I often think of you when I wake up after sleeping 10 hours (less wee waddles)!!
At the moment I am in bed about 12 hours per night!!! I read a little before sleep - wake up when OH brings in my tea - update my internet knowledge till OH brings in my breakfast. It really is a HARD life!🤣💥
Hi and welcome
You’ve already had good advice, but this give a bit more reading -when you feel up to it. It’s a big lengthy- but stick with it - and come back with queries anytime.
I am one of the lucky ones and found 15mg pred. worked miracles within a few hours. I also haven't found fatigue a problem so if the pain is under control I haven't had to adjust my lifestyle at all. I've had it for 4 years now and haven't successfully got below 10mg per day for any length of time but I'm happy to live with that to maintain my way of life. I think most people do have to slow up a bit if not a lot but hopefully you will be one of the lucky ones too😊
It really brings back memories of the awful pain. I used to lie in bed and not move. When I started taking pred the magic happened fifteen hours and twenty five minutes after taking the tablets. What a relief.
Remember you are ill, so don’t overdo things. Eat healthily and ask for a Dexascan to check your bone density. Pred can have side effects.
All I would add to the brilliant advice here is that some of us need more than 15mgs to start with. Pain relief took a few days to kick in for me and I had to go to 25mgs for a week or so to get the 70/80% relief we talk about. So give the Pred the time it needs to work for you.
Yes that's important to remember, my partner needed more pred and it got us worried that they were not improving on 15 and getting a quick response. Upped the pred and now they are much better.
Basically it's best not to compare yourself to others, your symptoms and response to treatments are unique to you.
Apparently 8% get the magic relief they go on about as "typical", 50% still don't have relief at 3 weeks ...
8%! it shouldn't even be mentioned in overviews that say its a key part of dx. My neck certainly went from 8 to 2 in hours but the rest a couple of weeks.
I had a 6-hour response that made such a difference - the bursitis took longer.
That 8% figure is from the relatively recent review paper by Berit Neilsen in Aarhus and Dasgupta in Southend, So I can only assume there were some earlier papers that claimed the dramatic response as being typical. Which we know isn't even if some of us experienced something akin to it.
The Pred should help. After that some aches and pains but taper preds to suit you. Good advice on forum website and book by Kate Gilbert
interesting that my GP did not tell me how serious PMR IS when I return next week after bloods on tue I think we will be having words
I don't think I'd say PMR itself is serious - although there is a potential risk that it can progress to full blown GCA, and that can be dangerous with an increased risk of stroke and loss of vision if not treated promptly. You should have been warned of the symptoms and told to watch out for them. There are doctors who will tell you that once you are on pred it can't turn into GCA but that isn't correct I'm afraid - it is less likely to turn into GCA but that isn't the same.
Hard luck. I was only diagnosed 4 weeks ago...but there’s a huge wealth of information here...so much help! I started on 15mg ofPred. But it wasn’t working as well as I’d like. I increased to 16mg & it’s settling a bit better.
Lots of good advise to read on here...I also started on 15mg two 1/2 years ago, didn’t do the trick so I called Dr and went up to 20 till it got results then started my long taper..currently at 3mg but have had to go up in dosage a few times...don’t be in a rush and don’t be afraid of the prednisone...and it’s not a miracle but it does lessen the symptoms a lot...makes life livable.
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Just been diagnosed with GCA - some help please
