Newly diagnosed with PMR, I’m finding the condition a bit of a ‘mine field’ tbh. Little advice from GP other than being told by him it was easy to treat and my medication would reduce in no time. This clearly is not the case since searching this condition online and reading many posts on here.
Initially on 15mgs Prednisolone, reduced to 12.5 after 3 weeks and again reduced to 10mgs which caused a massive flare within 2-3 days, virtually unable to move earlier this week, so Pred increased to 12.5mg in past 5 days which is now helping.
I have always been so active, often managing 2-3 exercise classes per day, 5 days a week, as well as working part time, where I am on my feet. So this has all come as a bit of a shock. Atm I can hardly walk, let alone attend exercise classes. I’m hoping this is just short term.
Can someone give me some advice on do’s & don’ts diet wise, together with drinking of tea, coffee & alcohol. Any other advice gratefully received in relation to ways to ease stiffness and pain as a ‘newbie’ to PMR.
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AquaZumba
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Hello Zumba, well you are going through the mill, entirely unnecessarily is my guess. I am no expert and others will be along to help who are more knowledgeable and experienced.
Was 15mgs sufficient to deal with your symptoms? You may well have needed more. How quickly was that GP advising you to reduce? The build up of inflammation needs to be cleared before any reduction is attempted. Enough Pred is the only thing that is going to manage your pain and stiffness.
Rest seems to be as important as the steroids in managing the condition, I have learned this the hard way. Not sure about the exercise until you are more settled.
Low carb diets seem to be the way to go if blood sugar is high, have you had blood tests?
So many questions, not many answers but there will be advice coming soon.
In the meantime, you are not alone, glad you have found the forum. Your symptoms will improve if your medics learn how to properly treat it. When you are armed with the research and all the information you need, tackle that GP or find another one.
Sending you my best wishes and a hug. Keep us up to date as we will be wondering how you are.
Thank you for your reply, so kind of you to spend time to answer some of my concerns.
I have only actually seen my GP once, after an e.consult, when surgery requested I have a face to face appointment. This was when my GP diagnosed PMR based on my symptoms. GP immediately started me on 15mgs. He did request blood tests , which I’ve had but no idea of results! Further reduction of Pred has literally been via a handout sheet that the GP gave me during my first appt. I reduced as highlighted until symptoms became so severe, I called my surgery who said No appts for another 3weeks! so I ended up going to urgent care on Monday. It was Dr @ hospital who increased my Pred and said I’d reduced too quickly.
I’ve finally managed to get a GP appt, week after next, when I will be armed with many questions for him.
If you are interested in gardening or just looking at photos of other people's gardens, a group was set up for people with PMR and GCA at facebook.com/groups/6288051...
the advice I didn't get until I found this forum: cut the carbs (severely) so that you don't put on weight. I became prediabetic so cut all sugars (I was already on a sugar -free diet)...including fructose (high levelsin fruit juices and many fruits)...berries are ok .
keep creaming skin, it can go very dry on pred.
listen to your body...lots of rest (not an easy one for me to comply with)
definitely only do the exercise you can manage easily and only for a short time (I haven't been able to do any..but that's another story...however I do keep moving...cleaning a small area of my flat each day...plus a walk of about 100 meters)
and if you have a question ask this forum...lots of really knowledgeable people here and lots of support whenever you need it.
Thank you for replying with such sound advice. I have already put on weight, something that has never been an issue for me. So diet is something I can definitely control myself along with creaming my skin and managing daily exercise.
I found I had to be ruthless about the carbs...never had any problem before the pred. A sylph-like 52 kg all my adult life. On pred: no bread, pasta, potatoes, rice...and of course no biscuits or cake. I am only on 1mg / 2mg of pred and still have to limit the carbs. It has really changed my metabolism.
unfortunately, your doctor will probably not be able to answer many of your questions as they simply do not know as they have not come across this condition very often or possibly ever. That is why this site is so invaluable. As you are aware from these posts, this is not a short-term condition. It sounds as though you have definitely been reducing far too quickly. If you are still in pain now, you possibly were not on enough pred as an initial dose. It is vital to clear out all the inflammation before you even consider reducing the dose. Are you still having headaches. if you are then you need to see someone quite quickly. I am sure that one of the pro advisors will shortly reply to give you more informed advice.
Thank you for your advice. I now realise that this is a long term condition. Absolute agony overnight, stiff as a board. Husband once again, managed to assist me sitting up & helped me get out of bed. 2.5hrs later I’m still shuffling in pain. Thankfully the stiffness is beginning to ease in the lower parts of my body. Luckily, I’ve had no further headaches.
Hope the 12.5mg works.. we probably would have suggested back to 15mg - following usual advice for a flare. If the 12.5mg doesn’t work then you may need to try 15mg anyway.
Then would suggest 1mg drops [many cannot manage the plan you were given] - so ask for 1mg tablets .. you need them anyway, or whilst waiting cut the 2,5mg into halves [near enough].
Hi Dorset Lady, Many thanks for all your replies and the links you kindly sent through, much appreciated. I do believe I should be on a higher dose of Pred atm. This morning, I am still so stiff and in pain throughout my body, feverish, having got up well over 4hrs ago. It’s obviously going to be one of those days!
Start again from 15mg, but only drop 1mg a time. You do need to advise doctor - saying the plan he gave you [although it might be a recognised one] didn't work, and you'd like to go slower. Say you sought advice from charity - and that's true - this forum is moderated by Charity staff - don't say "off the internet" - doesn't sit well with doctors.
But you do need to do your bit as well, I know you work, but you do need to rest as much as possible especially early days until Pred has got things under control.
Great advice DorsetLady. No I will not say “off the internet” to my GP.
I’m under no illusion about my part in all of this. Getting the right balance of rest, gentle exercise and working. Luckily, my work place (primary sch) are very supportive. I have already taken time off when symptoms have been severe.
Well this is a big question and there is much that could be said, and others will also be along to advise shortly.
I've had PMR for 5½yrs and I'm now down to 1½mgs of prednisolone.
Like many people on the forum, I was extremely active, fit & healthy before my diagnosis, so I explored all the ways I could enhance my 'new' health status and mitigate any potential side effects from the steroids.
As individuals, our needs will differ greatly, so you have to cherry pick from the information you find. It's not a case of 'one size fits all'.
Learn as much as you can from reliable & trustworthy sources:-
- this forum
- PMRGCAUK
- your local Support Group
- medical professionals (as long as you're confident they're knowledgeable regarding PMR/GCA)
- fellow sufferers (to share experiences)
These have been my main sources of gained knowledge & useful information.
In my own daily life, there are a number of important considerations relating to my PMR that I'm constantly addressing. These include:-
- My Diet
Following a very low carb (but not a no carb) diet helps maintain a healthy weight, preventing unnecessary weight gain as a side effect of the steroids. Steroids can potentially make your body metabolise sugars slightly differently so more fat is deposited in the body. (Others will be better able to explain the science behind this if required)
I definitely had to research this in order to help me understand the foods I should & probably shouldn't be eating.
I also try to avoid processed foods, so no ready meals, or anything that has an array of more than 4 to 5 ingredients in it where possible. (the more ingredients on the list the more chance of unwanted additives, preservatives, etc) Many of these 'added' ingredients could potentially have a negative effect on the body's inflammatory levels and we want to avoid that if possible.
I eat lots of fresh fruit & veg ( lowest carb ones though) protein, nuts & seeds, and when I do treat myself, it's usually with home baking so I know what's in it!
- My Activity Levels
I work within my own individual capabilities but I do go to the gym most weekdays and enjoy frequent walks around my locality. I also do 'yoga for osteoporosis'.
I've learnt the importance & necessity to pace myself and not push myself further than I'm capable though.
With PMR/GCA, overworking yourself is unlikely to improve your strength & stamina and more likely to cause a flare of the condition! Some exercise is definitely helpful though, if only as a maintainance tool to help prevent or slow down potential muscle wastage.
Just remember that rest is just as important as maintaining some level of activity.
- Hydration
I drink plenty of water each day because good hydration helps prevent constipation, maintain healthy kidney function and support the bodies other 'systems.
- Acceptance
As soon as I accepted that my life had changed from the way it had been, and that I was going to have to adapt to this new & different 'normal' for a while, I became more settled mentally & emotionally.
Navigating my way through this transition wasn't easy because it meant making some hard decisions, learning to say 'No', and making choices I wouldn't normally make. However, it became a far less stressful experience as I began to learn more about my condition and medications and could therefore make more informed decisions. Which brings me on to my final point...
- My Choice!
I've researched PMR/GCA and steroid use as much as possible (and contine to do so) so I now feel more empowered to make the choices that are right for me! I also feel that this in turn hands more of the control to me, so if I'm in a situation where I need to self advocate, I can do so with knowledgeable and well informed arguments.
I'm sure I'll have missed other important and helpful tips but others will be along to fill any gaps.
These are just a few of the strategies that have helped me and hopefully will just give you an idea of some of the things you might want to consider.
Don't be scared....it can all feel a bit overwhelming at first but you will be okay.
Many thanks for taking the time to message me Kendrew with such sound advice, in relation to coming to terms with the condition, diet, hydration and the general realisation of this condition.
Just remember that for the majority of us living with PMR/GCA it will gradually diminish and disappear altogether.
This can take time though with an average of 5 to 7 yrs being the time scale frequently quoted.
Just be patient, listen to your body and ask the reliable and knowledgeable people here whenever you have a concern or worry or just need some reassurance or support. You'll always receive a reply and this forum is always my first point of contact.
I think you should put this reply up as a separate post - it is SO comprehensive. Take a bit of time to think about it and add anything else you think useful on reflection.
This site has given me so much help and quality information that really helps, I am pleased you found it.I purchased a PMR diary as recommended from a suggestion here. Its easy to forget what improves or makes things worse, plus good for recording doses of medication.
I would see a good physio who understands PMR as you obviously enjoy lots exercise. Getting some suggestions of what to do, certain exercises can set my shoulders off etc .... Also when to rest, as you have an active job even if it is part time.
I have been told by my physio walking is great for bone density which we need to be aware of when taking prednisone. Yoga or pilates for stretching ( if you enjoy it) , plus when not having a flare dancing etc. These things will be there for you ONCE you get this under control which the experts here will help you with. Its hard and may not be helpful to excercise too much when in that much pain, meanwhile try walking in the fresh air as it will make you feel better, regardless of the weather.
I started about 3 months ago on Prednisolone 15g ( magic) then 12.5 g after 3 weeks then 10g after another 3 weeks as Rhemy recommend . Got in a pickle, back to 12.5 till I had a blood test. ( which I now look up on my NHS app to get the readings, get tested monthly if possible, even though it seems some people will score fine when they are not!)
Now learning from this site, I am using their gradual approach and taking 12g , till I feel confident to try 11.5g...
Hi TandemTime, Many thanks for your informative reply, much appreciated. Physio sounds a good idea, although I waited 7mths for an online appointment, when referred by my Consultant Othopaedic surgeon at the hospital. I had a TKR in 2017, having problems with knee joint again. Although now I believe this might be more to do with PMR rather than Ortho changes. I really don’t know. Still something I could ask my GP though.
Physio in itself isn't always a good idea - the primary poison in exercise with PMW is repetitive actions and physio tends to be - repetitive actions!! And far too many physios haven't a clue what PMR is.
Walking is good - always slight variations on how a muscle is being used. And aquafit was my saviour for 5 years of PMR without pred. But you have to start as an absolute beginner and well under the level you did pre-PMR - walking even, start with just 5 mins out and 5 mins back - assess next day to see if you can feel it. If not, add 1min each way - rinse and repeat until you get to a time where you can feel it next day. Then go back to the previous time and stick there to get in training for a couple of weeks. Then test again. The rest days are as important as the exercise days - you could do a few bicep curls on those days, using different muscles, but start with just 5 reps with small water bottles with 250mls, not full. Assess the next day and add a few reps if you are OK.
I know it sounds ridiculously slow but, like tapering, it isn't slow if it works! Your muscles are far more likely to develop DOMS (delayed onset muscle soreness) and will take longer to recover. Once it has happened it is too late and you will have to rest until it resolves - so avoid it in the first place. It can take weeks if you really have overdone it, your muscles simply don't heal the same way.
Same with aquafit, make sure the class leader knows you have a muscle condition and won't be doing things full on at first. I find trying to walk through water leaves me totally flattened with fatigue though actually I can barely move but most things are OK as long as I am careful. When I started I was very watchful and if I was tired, I finished early. But after a few months I was as good as everyone else. BUT - make sure it is a warm pool. If it felt cold I didn't go in or my muscles just siezed up! Having done a class, I was mobile enough to go on and do a Pilates class - always at MY level, not anyone else's - or Iyengha yogo/ Both were adapted for me - never try to do what everyone else is doing even if you used to be able to. It will come, just not yet.
Thank you PMRpro 😊 I have just read this out to my OH who is very supportive but still after nearly four years finds it hard to accept what I can and cannot do. Your post is so clear that I think it helped him to understand x
I'm equally new to this so very interested in the answers to your post. I too tapered too quickly, my GP didn't even know there was a dose lower than 5 mg. I haven't noticed weight gain apart from my face. I would be interested if that remains even on a very low dose (I started on 15mg and have been on 12.5mg for the past 4 weeks). Tomorrow I am going to begin 10mg and 12.5mg alternate days for 4 weeks. If anyone thinks this is daft, please say and I will go back to my GP. Clearly there must be a dose of 1mg because I have seen posts where people take 7mg.
I also have very dry lips which I didn't have prior to taking Prednisolone. I'm unable to help with the question of exercise as my journey also includes recently discovered osteoporosis so currently I am only doing some very gently exercises.
Hi. I’m interested in your comments re. flipflopping with pred doses. I’m 12 days in, taking 15mg per day so due to reduce to 12.5 in 9 days. I was thinking of doing the same as you but starting with 2 days 12.5 then 1 day 10, then alternate days, then 2 days 10 one day 12.5, then 3 days 10 one day 12.5 etc. until totally pain free again. This is the loose plan - I envisage adjusting as I go according to pain. Hope that makes sense.
In Kate Gibson’s book she talks about the stairs method v the escalator method (page 96) where an Austrian consultant does a more gradual reduction.
Kate Gilbert, not Gibson. I suspect the tapers are actually the ones we developed but the doctor, who is actually my rheumy. approved. He never suggested them to me though!!
There are 1mg, 2,5mg, 5mg, 10mg, and even higher tablets for those if us that had GCA!
May of us aren’t keen on the alternate days of reducing - and suggest that a slower tapering plan is easier on the body.. or you could just ask for 1mg tablets and use them.
But would just add please have a look through the FAQs, they are all posts with others experiences as well as advice - so not just bland ‘this is what you do’ statements like FAQs on some sites.
Neither coffee, tea nor alcohol is a no, no with Pred or PMR, but your taste buds may change, so just just play it by ear.
Plus , if you have already please do join the PMRGCAuk charity - it has a lot more info etc
Hi, I’m new to PMR - 12 days since diagnosis and starting pred at 15mg - so I’m not yet in a position to give any advice. Since diagnosis I’ve spent every spare moment reading about PMR and adjusting my diet and adding supplements. I’m trying hard to listen to my body re exercise and rest. For the last 10 days I’ve been pain free so hoping that continues 🤞but prepared for anything.
Have you read Kate Gilbert’s book: PMR and GCA, a survival guide (2nd ed)? I have found it invaluable.
Thank you for recommendations. I have just purchased from abebooks.co.uk which is a site selling used and new books. Also noticed many books on anti-inflammatory diet for PMR.
I wouldn't waste money on the so-called PMR diet books. Everyone is different as to what foods don't suit them so a bit of experimentation for yourself is better. What is extremely beneficial is cutting carbs, especially processed foods and added sugar which helps reduce the risk of weight gain and developing steroid-induced diabetes.
I'll just mention in relation those diet books - there is a whole range, all by the same author, with different titles though the only difference is the illness it purports to be specifically related to. And they are all very very similar ...
Hello and welcome! I've been on exactly your pred schedule since I was diagnosed in June, its one of the standard ones but the guidelines say it often needs adapting as people react very differently. For me it's been OK so far and my main issue is I get tired and have to make sure I rest enough. I was lucky in that I was diagnosed by a conscientious trainee GP who explained everything very carefully, suggested I download pmrgcauk information packs, and texted a week after each dose reduction to check i was ok. unfortunately shes moved on but this forum is amazing!
Hi there and welcome to the club no one wants to join. I see you have had a barrage of great advice so only a couple of things from me.
Pacing is pretty crucial with PMR and any autoimmune condition. Have a look on Google at "spoon theory" for info on that. I wish I had been aware of this as the start.
I am a qualified exercise professional but no longer work due to PMR and various other joint and spinal issues. I am guessing you enjoy Zumba and Aqua. Both of these are great cardio. However, as exercises like Zumba, running, weight training etc cause micro trauma to the long muscle fibres of the body as this is how the body makes muscles stronger I would exercise caution. It will take longer to get over an exercise session than it normally would.
I would suggest swimming and the occasional Aqua class if you can manage it. Leave a couple of days between your sessions. Pilates or Yoga will help maintain your flexibility.
Walking is great as you can pace yourself and use appropriate aids like walking poles or in my case a rollator. I was only 46 (remission after 2 years and then recurred again at 54 to date) when I was first diagnosed and have a whole collection of walking aids to use when and if I need them. Don't be embarrassed to use whatever will help you to maintain a good posture and gait.
Whilst others have mentioned looking after dry skin I will mention hair. I was on 30mg of steroids a day at the start and I lost a lot of hair. My hair was always straight, fine and greasy. When it grew back it's was course, dry and curly! So hair conditioner helps and I tend to wear a swimming hat so that I don't expose my hair too much to the pool chemicals. I found that showering after swimming and putting a hair mask on with a towelling turban and sitting in the sauna really helped condition my new style hair! Don't overcook yourself though and remember to rinse it off!
Hope all the advice on here helps you and I can highly recommend Dorset Lady's slow taper. I am on 4mg a day now and hoping to start my next taper after Christmas. My version of PMR seems like the one that doesn't easily go into remission so I've accepted that I may always need a low dose of steroids to keep it under control.
By the way, don't forget that relaxation and rest are as vital to your good health as exercise and diet. Be kind to yourself 🙂
Many thanks for taking the time to cover so many aspects of this autoimmune condition. I have been reading up on ‘Spoon theory’ that you suggested. Something I had never heard of and all sounds very interesting.
I have always been a ‘fitness freak’ taking part in a range of classes, from Body combat, Pilates, Aqua, Zumba etc. I obviously realise that I literally can’t attend any fitness classes atm, until things settle down. I am walking and swimming when I can. Thanks for the advice about the hair mask, very helpful as I have long hair, when my shoulders allow me to scrunch up the hair.
Welcome. Having read all the advice for you, I see no-one has mentioned early morning dosing. It's something which I found to be a game changer and many others derive from it too. The theory is based on the fact that the inflammation producing chemical, a cytokine called Interleukin 6, is shed at around 4am and reaches a peak a few hours later. By taking your Pred dose at around 2-3am there will be a good level of it in your blood stream to "mop up" the inflammation. This results in a marked reduction, and for me, a complete cessation of morning stiffness, providing of course that I have the dose right. Unfortunately I recently had a flare so am back at 6mg from 2mg but like you, I was fit, busy and had no time for PMR when it first got me 7 years ago. Think tortoise and not hare and you will win the race. I'm 66 now, I still ski (cruising not speeding), play tennis (doubles not singles) and walk friends dogs twice a week. Be sensible in the early days, keep a daily diary of dose and symptoms for you to refer to at a later date and r e l a x. !
We may well have had AZ indicated her dose wasn’t lasting 24 hours… but she was flaring because her taper had been too quick. So the main aim of most replies was to help her get things back under control with a higher dose.
We also suggest not changing more than one thing at a time… so
a. get back on track, and then when that happens, if she still has early morning issues maybe consider
That makes complete sense & seems a great idea to trial taking Pred around 2-3am. I’m definitely up for giving that a go. Anything to slightly ease morning stiffness would be a winner with me.
I have started a daily diary today given all the advice from fellow sufferers.
I’m sorry to hear you had a recent flare and have had to increase Pred again. Pleased to hear you have been so active which gives me much hope and encouragement.
Hi and my love as you go on this unpredictable journey. I use the NHS app and find it very useful for blood test results, as well as ordering repeat prescriptions and seeing the notes on your healthcare. It is easy to use. You can get information on how to interpret blood tests by searching the NHS website. Often better than waiting for the GP. And you should ask for the blood tests to be done regularly along with a DEXA scan on your bone density. There's a lot to learn with PMR and the more you learn, the stronger you become. Keeping asking - and good luck x
Many thanks for the info about the NHS app re: blood test results, ordering repeat prescriptions & accessing notes. Thankfully I’ve been having annual DEXA scans for many years now for Osteoporosis.
You will probably get more easily understandable info on how to interpret blood tests if you ask on here. Obviously there are some we can't help with but you probably won't understand anything about them on the NHS sites either.
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