Looking for some help and advice to deal PMR. I was diagnosed about month ago put on prednisone 15mg saw very quick easing of pains and was advised to reduce to 12mg after a week. Had what I presume is a flare up as pains back again as before so now back up to 15mg. Having sweats, sleeping problems, tiredness felling generally low and up till now have continued to go to work but have given in and took some time off.
I am realising that this is going to be a long haul to sort out. Is there anything I can do to help diet, excercise etc.
Would be grateful of any suggestions.
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Sisterj
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Hello Sisterj, are you saying that although you were diagnosed with PMR a month ago, you had only been on the 15mg starting dose for a week when you were advised to reduce to 12mg? If so, that was the wrong advice, as unfortunately evidenced by your returning pain necessitating the need to return to the starting dose. What a pity when you had experienced such a good response with fast improving pain levels.
It is recommended to remain on the starting dose for at least 4 weeks, preferably 6 weeks, before trying a reduction and then to no lower than 12.5mg. Some people find they are only able to reduce in even smaller decrements, and by no more than 10% is recommended by some experts. It is important to remember that the steroids are not curing anything, they are just damping down the inflammation that causes the pain whilst PMR runs its course and that can take anything from two years upwards, with a few very lucky people reaching remission in 12-18 months.
There are a few things you can do to help yourself, and you are already on the right track with taking some time off work. Look up anti-inflammatory foods and stick to them as far as possible, avoiding those foods known to be pro-inflammatory; be sure to take your steroids as early in the morning as possible to help with sleeping better at night; don't overdo things on a good day as PMR has a nasty habit of coming back to bite on the next; if you haven't already had one, do ask for a Vit D blood test as any deficiency can lead to pain in similar areas to those of PMR. There is also an excellent book available called 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' written by Kate Gilbert, and available from Amazon or from PMRGCAuk direct at pmrgcauk.com, with all proceeds from the sale donated to the Charity.
I do hope some of that helps but do come back with any questions and there will always be someone around on here to help from their own experience.
Thanks for advice am beginning to realise this is going to be a slow process.
Will get the reading book you suggested and go from there.
Not had any blood tests as GP felt if it was PMR it would react fairly quickly and he did make me an appointment to return in few days to see if it had had any effect. Following me having to increase meds have appointment end of week and will go armed with a few more questions. I think he is only newly qualified as he has also told me i need to take alendronic acid too, which as yet can't bring myself to start yet am struggling to get my head round everything else.
What a pity your GP didn't take blood tests (ESR and CRP) to check for inflammatory markers before, or at the same time as, putting you on steroids even if he did suspect PMR. At least if blood test markers are raised at diagnosis, it can be a helpful guide along with your symptoms in the future.
Also, if you haven't had a DEXA bone density scan which shows that you have bone thinning which could lead to osteoporosis, then do ask for one BEFORE taking alendronic acid - you may not need it and why take unnecessary medication with its own potential serious side effects if you don't need it. You should however be taking a Calcium plus Vit D supplement which will help keep your bones strong.
Insist on a dexascan before starting the alendronic acid - you may not need it, as Celtic has said. My bone density was fine, for over 6 years I have taken calcium and vit D supplements and it hadn't changed at all while on pred after nearly 4 years, sometimes at well over 10mg and for nearly a year almost unable to exercise at all. I didn't need to add in another medication with its own side effects.
I think a good start might be for your doctor (I assume GP?) to learn that, whatever your immediate response to 15mg of pred is, you need to stay there for at least a month, usually 6 weeks, before even thinking about a reduction. All your symptoms need to be reduced noticeably and stable and if your ESR/CRP were raised beforehand they also need to be down to normal range and steady. This is recommended reading for how to go about things from expert rheumatologists aimed at GPs (so they shouldn't get shirty).
I suppose you could hope his speedy reduction was as a sort of confirmation of the diagnosis... (see page 3!)
All those things you describe can be due to PMR - and also to pred. The fatigue in common in all autoimmune disorders and the pred won't change it - you have to manage the management of PMR too. The pred relieves the inflammation that is the cause of the pain and stiffness - the rest you must adjust to. Pacing is essential - learn your limits and stick to them. You will achieve far more if you do a bit and then rest before doing a bit more - even planning a proper "nap" in the afternoon will give you a longer useful day than trying to bash your way through - which will usually result in your being so ratty and physically tired you can do nothing at all later in the day. This is a good allegory:
Diet - depends. Some people swear by avoiding things, others add in anti-inflammatory foods such as oily fish, turmeric and garlic and say they notice when they haven't eaten them. Something that does seem to help greatly with the potential weight gain due to pred (and also for the risk of developing diabetes) is to drastically cut processed carbohydrates, especially sugar and finely ground and refined flour. Some people have not put on weight, I managed to lose the weight I had put on due to pred while still taking 10-15mg.
Exercise - it depends what you can manage. Certainly trying to keep moving helps with the stiffness - but doing anything too heavy/energetic will tire you out. Walking is good - it gets you out in the fresh air and is a good preventative for osteoporosis. But you may find it makes your leg muscles very tired and sore the next day - so try 3 lots of 10mins rather than 30 min all at once to start with and work from there.
That brings me to another point - if you do too much you will find it comes back to haunt you next day! That is very common at the beginning; you take pred, feel wonderful and rush around trying to do all the things you haven't been able to do. The result is often feeling as bad as you did without pred. Your muscles are intolerant of exercise due to the underlying autoimmune disorder that is the cause of the symptoms - and the pred does nothing to change that. You will be able to do more eventually - you can train those muscles but it must be a slow process, increasing the amount you do very slowly, minutes more walking at a time for example. Try to avoid repetitive or sustained actions - they tire the muscles much more than when you are moving about and changing what you are asking a muscle to do from minute to minute.
Maybe there is a support group near you - or others who aren't too far away who you could meet for coffee perhaps - whereabouts do you live?
You'll also find links to a lot of reliable reading and sites here:
Thanks for advice will be better prepared for my next GP appointment at end of week. No blood tests done yet but will ask. Will look at info you suggest. Am not happy about taking time off work but will concede that maybe I need to be kinder to myself and not beat myself up about it.
You must remember that you have a chronic illness - you are lucky in that it is one that it is possible to manage fairly well in terms of the pain and stiffness - but the underlying illness is still there, just like using cold remedies makes you (maybe) feel a bit better but you still feel rough. Working means stress - if only the effort of getting going in the morning and getting to work at a time when you probably feel your worst - and autoimmune illnesses of any sort and stress don't mix well. In fact, many people identify the start of PMR as coinciding with a period of stress. It isn't the only factor, but it can be an important one.
And absolutely - no beating yourself up. It wasn't anything you did that led to you being ill and the best thing you can do to feel better is rest appropriately. That doesn't mean lying in bed and feeling sorry for yourself - gentle exercise and movement will actually make you feel better as long as you are careful not to overdo things - but it does make a major difference when you conserve your spoons. Not just for you, I might add, but for everyone around you because both PMR and pred are notorious for making you short tempered and emotional!
Thanks for your advice. The more you write the more I can identify with have been snappy at work and tearful which is not something I usually am so more side effects to meds/illness!
Been awake since early hours and in discomfort still so pain not easing yet. I just read the link you sent me on the spoons, very interesting reading.
What strength calcium tabs/vitamin D do you advise to take as am unsure please. Not going to take alendronic acid!
I have AF and also take rivaroxaban to so don't want to add any more meds than needed.
You're in the UK so you can ask your doctor to give you a prescription for Adcal or Calceos - you normally take 2 of the tablets per day. I believe one of them now comes in "caplets" and then you take 4 a day.
The tablets should have 600mg of the calcium salt and 400 IU vit D3 and as I say, 2x daily. We suggest pred for breakfast, calcium for lunch and tea because there should be at least 2-3 hours between taking pred and the calcium. You absorb it better if you have a small amount of fat - so don't use skimmed milk, at least semi-skimmed is better to absorb the calcium in milk - and don't take both tablets at the same time, the body will only absorb so much at one time however much is available.
Hi Sisterj. It's a real adjustment coming to terms with the chronic nature of the disease, and the ramifications of the treatment. I just want to weigh in with my experience. LIke you I started at 15, but my doctor did advise me to start a reduction of 1 mg per week after five weeks, which was helpful as I was able to stop myself at 9 and go back to 10 with no major flare. Since then I've been following the Dead Slow and Nearly Stop reduction plan which you'll find on this site. It's taken months longer than I anticipated, but I'm now at the 7 mg level and still feeling like the inflammation is under control.
At my request I had a bone scan three months into the prednisone treatment; turns out I have osteopenia. Because I'm literally terrified of the possible side effects from all of the osteoporosis drugs I've opted to use natural methods to at least prevent further loss of bone mass. Hopefully as I continue to reduce pred intake my bone mass will start to improve. Perhaps as a result of appropriate exercise, plenty of rest and greater attention to my diet, including taking care with the micronutrients so many of us lack in our modern diet, I'm feeling quite well these days. Fingers crossed.
All the best to you as you embark on this unfortunate journey!
Follow all advice from other members sweats ,sleeping or not sleeping and fatigue are all part and parcel of this lovely illness.
I had 4 moths of work and did not ever think I would return to work but I have but aware that I still need to take it easy .Its a long haul but is manageable as long as you are kind to yourself and don't push yourself .
From reading things on the site it sounds like different things work for different people. It took 2 years for me to get a diagnosis, despite me telling doctors my mum had pmr. I found swimming one of the few things that I could do comfortably, although getting in and out of the pool was still uncomfortable. Now on medication I am able to do a lot more as stiffness and the majority of the pain has gone. I am hoping to start doing some light exercise at the gym soon. I also find massage helpful in keeping muscles relaxed.
I COULDN'T get out of a pool unless it had steps and a handrail! I couldn't swim much either - but for 5 years aqua aerobic classes kept me moving even though I wasn't on pred. I couldn't do much at first but after a while I was doing all of it and even Pilates and yoga after. They were all a bit adapted for me - and I couldn't do anything without the pool work first.
I do hope you are feeling better than when you posted.
I was diagnosed 2 months ago. I started on Pred 15 and now I am on 13 ( I cut down to 12.5) but neck pain returned and I took good advice to increase to 13mg while the busy holiday time. I also take adcal 2 a day. This is what I am doing and I feel quite good generally:
I swim for half an hour every other day not consequtive days as I suffer!
I have learnt to say 'no' to requests if it doesn't suit me - I choose more what I want to do as I know my body
I ask for help more and explain how I feel as people don't know
I carry on with my job in a school but I don't work full days it too tiring
I take a cranberry supplement to avoid urine infections which I had early on
I eat oily fish like salmon and sardines 3 times a week
I take 2 teaspoons of Manuka 15+ honey twice a day- I haven't had a cold yet whilst others around me have so fingers crossed. Manuka is expensive but it's my health.
If I have busy day tomorrow I rest most of the day before
Exercise every day if possible even just a short walk or moving to music is fun!!!
Sleeplessness- I was posting here when I first went on Pred and got good advice- after 2 months I am sleeping better- seemed to coincide with reducing Pred( but I only reduced in .5mg stages and was on 15mg for 6 weeks)
Above all. try to do what you did before but in smaller chunks as if you have to stop what you like it makes us fed up and this isn't good.
Thanks for your reply. Yes am starting to feel somewhat better just some pain in neck/shoulders but more bearable than before. Am still on 15mg and will stick on this for a while at the moment. I have only had blood tests done today for the first time so don't really think they will give true reflection of what inflammation levels were as they must have calmed down a bit now. Still having trouble sleeping and sweating in the day is a bit of a nightmare doc not sure if it's meds or not. I haven't started with any supplements yet as still getting my head round everything. Doctor has signed me off work for couple of weeks so hopefully this will help as told him I can't function properly at the moment, am forgetful and lacking in get up and go.
Am trying to think on the positive and hope it was just a blip from reducing meds too quickly. Also coming to terms with it being long term illness and that I need to pace myself and that I going to have to take steroids even if I don't want to.
You obviously have got yourself very organised, maybe I should take a leaf out of your book.
Not having to work for a couple of weeks is great. Don't let the seasonal activities wipe out that benefit! Have a wonderful break, be extra kind to yourself. We all have our own ways of unwinding after a bit of stress. I like to soak in a hot tub with some salts and a few drops of (safe) essential oil. Almost as good as an extra dose of pred! Cheers. 🎅
I am sticking to 13mg until after the festivities. I am having a complete rest today as I have a very busy day tomorrow - I have to go to London as my granddaughter has to see a consultant for hypermobility - we are wondering if there is a family link to rheumatic conditions- today I have done nothing and I feel more achy this afternoon than if I go swimming - should be a good workout tomorrow battling the crowds!
I will take a heat pad with me if my neck and shoulders play up.
as I will.
It is hard to come to terms with PMR but when you get to know your limitations its OK. Problem is that other people can't see what we are going through and sometimes expect too much. Enjoy your 2 weeks off and try to learn something new to take your mind off it. I got a book from the library on Mozart - I had the faintest interest in classical composers- now I am looking into his life - I must say it is interesting. I am not suggesting Mozart but if you get immersed in something not to do with PMR it is uplifting. PMR can grind us down but also it may give you time to learn new skills or develop an interest.
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