Hello everyone, my name is Barnabus. I am new on here. I've been having all the symptoms,debilitating pain & stiffness in shoulders pelvis and thighs since June 2016. GPs kept telling me it was my age (70), it was wear and tear etc. Gave me painkillers, Codydramol & 300 mg Maxitram a day. They didn't really help to ease pain. After almost 8 months I was eventually told I have PMR and was put on a starting daily dose of 20mg Pred at end of February '17. Tapering down to my current 9 mgs, then hopefully by 1mg per month. At 9mgs. I am easily fatigued, first time I have really felt every one of my 70 years!! Also experiencing tummy upsets. On the plus side, I'm not having as many hot, sweaty episodes! I have also started tapering off the Maxitram and am currently on 250mgs daily. Some days I feel really lethargic, which is hard to get used to as I have always been very active. Anyway, enough rambling on from me. Best wishes to all, Barnabus
Hello, PMR newcomer here.: Hello everyone, my name... - PMRGCAuk
Hello, PMR newcomer here.
Hi Barnabus and welcome! What a dear little dog.
I hope you find this site as informative and comforting as I have over the past year or so. I see that you were given the usual run around before you were finally diagnosed. You do seem to be tapering quite quickly. The received wisdom here is that you shouldn't reduce by more than 10% of your dose at a time. The dead slow nearly stop method is advocated as a very gentle way to reduce Prednisalone without upsetting your system too much. The danger in going too fast is that your symptoms may flare up to such an extent that you end up back on your starting dose. If you do a search for the DSNS method of tapering it ought to come up, it's been posted countless times. I'm not tech savvy enough to put a link in here. Good luck and let us know how you are getting on.
Thanks SheffieldJane, I appreciate your reply. Not knowing very much about the condition, I hadn't realised that my tapering was quite fast. After reading your comments and other posts I can see that maybe I have overdone it! However, I have been following directions from doctor and rheumatologist. I'll have a good chat with them about it next time. Meantime I'll check out DSNS as you suggest. Thanks again, Barnabus
Hi Barnabus, you have done an incredible reduction very quickly. It is normally suggested not to reduce more than ten per cent at any one time. PMR is life changing you cannot carry on as if nothing has happened just because you are taking steroids doesn't matter what the doctors tell you. One of the rules of PMR is rest, rest, rest. Trying to carry on as normal will cause fatigue which is a PMR symptom. It is very frustrating when you have been active, but we do have accept that things have changed and we have an illness.
Thank you for the reply Piglette. I will speak to my doctor and rheumatologist about slowing down the reduction rate. On reflection, after reading your post and others, it probably has been a bit speedy! I'm still trying to come to terms with PMR, I'll take your advice and make time for a lie-down during the day. Thanks again for replying, Barnabus I
Hi Barnabus, and welcome,
As others rightly say you have reduced quite quickly, so from now on might be wise to go a little slower, either using a slower taper or smaller steps i.e. 0.5mg a time - especially as you get lower.
Your PMR is still active, and you are probably at a point where your dose of Pred is only just controlling things so don't be too gung ho about reducing. And as piglette say, you need to build in rest times during the day.
Good luck, and keep us informed of progress.
Gorgeous dog!
Thank you DorsetLady for your reply. Thanks to you and others I am now realising that I have been reducing a bit on the fast side! It is only recently sinking in that I actually have PMR! It takes a bit of getting used to!! I appreciate your advice and will let you all know how I progress. Thank you, Barnabus
Yes it does take time to come to terms with. Mainly I think because most of us know nothing about it at the outset nor anybody with it, and it does manifest itself it some peculiar ways. Plus, it's not like lots of illnesses - take a course of tablets and it's sorted. It's not sorted as such and has a tendency to last a lot longer than the medics think! It can be controlled partially by the Pred, but we have to do our bit as well - which is where the pacing comes in. And accepting, no matter how much we'd like to, we can't rush it!
Thank you. It was indeed a surprise when I was diagnosed with a condition that I'd never heard of before! I am gradually learning more about it, mostly from this forum. Although neither my doctor nor rheumatologist have said so, I am now thinking that perhaps they want me tapering quite quickly due to my osteoporosis. I will ask them about this next time, as I am now persuaded that it is better to take it slowly. On a more cheery note, I had a wonderful day today! Felt pretty good this morning, met up with an old friend,had a lovely lunch and green tea together. Then a pleasant stroll before going home for a snooze!! Thank you once again.
Whilst getting you to a lower dose of pred may be beneficial for osteoporosis - if it results in increased PMR symptoms, it will introduce limited mobility to the mix. And that is a major risk factor for osteoporosis! So are the PPIs (esomeprazole) - but they rarely panic about them.
Personally I think you might discuss reducing the painkillers which generally do next to nothing in PMR and using a perhaps slightly higher dose of pred to manage the pain if needed instead.
Are you on any other medication?
Thank you for your reply. I don't take the Codydromol anymore and have started to reduce the Maxitram by 50mgs a month. If necessary I occasionally take 2 paracetamol if my neck is painful in the morning. I would agree with your view that painkillers are mostly of little use with this condition. For about 8 months before I was diagnosed I was prescribed different types of painkillers, but they never really hit the PMR. I am on Atorvastatins, Esomeprazole ( for Hiatus Hernia/reflux). Also,for Osteoporosis I am on Vitamin D3 and an annual Aplasta infusion. Thanks again.
I asked because of your comment about tummy upsets. The PPIs (esomeprazole) have a reputation for that. And you wouldn't be the first person on statins to develop PMR.
I, too, found it relatively easy to reduce the first few months. But at 9 mg I had to slow down drastically and used the dead slow nearly stop method since then. Slowing down now that you are at your current level will also help keep a lid on the fatigue, although it may not improve much for the next few months.
Anything you can do to help your bones, appropriate exercise, the right supplements, will also help you feel generally better in yourself.
Thank you for your reply. Yes, the first few months were quite easy, but I am now feeling the effects of fatigue quite a lot. I will definitely be having a chat with the doctor and rheumatologist about slowing the tapering down now. I have been thinking that maybe they want to try to get me off the Pred quickly because of my Osteoporosis. I'll ask them about this. I have just started doing some gentle exercises with a fairly light pair of dumbbells and keeping as active as possible with light gardening and walking. Thank you for the advice, it's amazing how much wisdom there is on this forum!. It has been a real blessing to me.
Okay, have a look at this item, then hie thee to the supplements store:
authoritynutrition.com/vita...
Please note that not everyone finds that pred affects their bones, although it certainly won't help. If you are able to continue tapering fairly regularly, even dead slow reduction allows 1 mg drop every month to six weeks, you will in next to no time be at a level which has a minimal effect upon bones. I eat lots of leafy greens, like kale and broccoli, and I think that helps too.
Thanks Heron, the article on K2 is very interesting. I'll have to order Some, it's worth a try. Must admit although I love most veg I was never too keen on leafy greens ! However, under the circumstances I will give them another chance. You never know, my taste could have changed over the years!
All the best.
You know, I never even knew about kale until a few years ago, and it's very versatile. As is broccoli. You don't have to have salad, there's soup, there's stir fry, there's ways of hiding the ingredient in another dish.... And if you google non-dairy sources of calcium you will find other ideas.
As a child we used to grow kale for the cattle! It is all the rage now.
I think I'll give it a try, the stir-fry option sounds best to me. You mention non-dairy source of calcium. Is that a better choice than dairy?
Barnabus, dairy is not really the best source of calcium for us, at least not lots of plain liquid milk. Aged and fermented cheeses, kefir and yoghurt are good. But, unlike iron which is most easily absorbed from animal rather than plant sources, apparently we quite easily obtain calcium from plants. There's a fair amount of phosphorus in animal sources and that can undo some of the good. But I'd never tell people to cut out any food group. Balance and commonsense are the key! It's interesting that some of the highest rates of osteoporosis are found in countries with the highest rate of dairy consumption although I do wonder whether that's because of a lack of Vitamin D in far northern realms, like Finland. I suppose someone must have studied that.
And I also believe that micronutrients which help us absorb and metabolize calcium are at least as important as the calcium.
Some things are an acquired taste - but really, you just have to find ways of making them more acceptable. I'll eat dark leafy greens in any shape or form though I do find kale very underwhelming. But florets of broccoli in my salad with the lamb's lettuce and rocket - now you're talking 
Yes. I'll have to do some experimenting with leafy greens. I enjoy all sorts of salads,so will now introduce some broccoli etc. and see how it goes. It's great to get these suggestions on the forum.
My husband (fussy creature that he is) happily eats cauliflower cheese (probably the only veg he eats). So I do 2 separate small dishes and mine gets broccoli as well - and the "cheese sauce" is an egg beaten in greek yoghurt - yum!!!
Broccoli added to cauliflower cheese would probably work for me. Not so sure about the egg/Greek yoghurt cheese sauce!
Hi Barnabus, Tummy upsets I can relate to as statins left me with IBS, best advice about this I got from my local pharmacist. I think we can all relate to feeling tired all the time and can only agree with the advice to rest frequently. A little work an then a little rest works for me.
Hi CT. Thank you. Because of the reported problems with statins I'd rather not take them at all. Unfortunately my doctor insists that I do, due to my age, risk factors etc. I'm beginning to realise that it does no harm to rest during the day. The 70s (and PMR) have crept up on me and taken me by surprise!
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