I was diagnosed with PMR by my GP on 16 May 2017 after three weeks of increasing pain etc. so have lived with it for just over a year. During the year, I have been up and down, occasionally feeling fine, other times not able to walk upstairs, bend over to get things out of cupboards and then stand up again, walk around the village to do shopping etc. I had got down to 12.5mg of Pred but my new GP, the other one retired, put me back up to 30(!) as she said I needed to get my blood readings down. Have now been on 25mg for a couple of weeks and am due a blood test this week and then see her again next week. Since the dose was upped, I find I am getting very badly swollen ankles (no pain) terrible blood blotches on my arms (looks as if my husband has been hitting me!) losing hair and whats left is all wire-y, not sleeping well (I heard this morning the birds start at 4.15am) and still breathless. On the plus side, I am able to do some walks 3-4 miles without suffering too much the next day, though uphill is a bit difficult. I realise from the forum that I have come off very lightly compared with what some people suffer, but am really getting fed up with it and it seems no end in sight.
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Maryis80
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Mary, I’m amazed at the 3-4 miles of walking that you say you are able to do in spite of your symptoms/bloods necessitating an increase to 30mg (a bit overkill in itself!). I wonder if perhaps you are overdoing the walking and actually aggravating your inflammation? The high dose is obviously causing fluid retention resulting in your swollen ankles. Try including lots of diuretic-type foods in your diet - asparagus and watermelon to mention a couple. The sooner you can get down to a lower dose that still controls the inflammation, the better, and your arms should improve as well, but I think you should help the steroids to do their job and not overdo it with the walking for the time being. Good luck!
thanks for the advice re. asparagus - we have this every day during the season, its delicious with Mary Berry hollandaise sauce! I dont do 3-4 miles walking every day, in fact, probably once every ten days, usually with a coffee break in the middle. Its so lovely to get out and see the bluebells in our local woods. Will see what the blood results are this week but will definitely "suggest" to my GP that I should start reducing the dreaded Pred.
Mary, it sounds as though you are an asparagus lover like me! Other diuretic-type foods that are my go-to more frequently when fluid builds up (usually due to BP pills in my case) are celery, watercress and garlic. The latter also helps to ward off infections - haven't lost any friends yet! Even though you don't do 3-4 miles walking every day, just doing that length occasionally could be enough to set you back inflammation-wise. I used to find I often had to sit on the nearest available house wall when doing my daily walk, but that was usually only for about 20 mins, and at a much lower dose. The steroids, no matter how high a dose, are not curing anything, they are just damping down the inflammation whilst the disease itself takes its course and that can take anything from 2 years upwards - 6.5 years for me with 5.5 of those on steroids. It goes into remission when IT wants to and not before/when we want it to. Good luck with the blood test results.
That was a bit OTT- I do wish they'd consider the guidelines when raising the dose! 20-25mg would probably have been plenty and saved you some of the side effects. However - at least she didn't tell you it isn't PMR and have a paddy and is obviously happy to allow a patient a decent dose of pred.
It will get better as you lower the dose though - all the best. But like Celtic - I'd suggest a bit less exercise and keeping your feet up a bit more! I found that manual lymph drainage helped my swollen ankles a lot and very quickly.
It was a physiotherapist I had gone to see about something else who suggested it to me and did it. He just did the worse leg that session - and within a few days both were back to normal!
Hi Mary73, When I had a knee replacement in France 5 yrs ago, where everyone is provided with 3 weeks stay in a physio hospital after op., I was given lymph drainage each day which consisted of a type of a bag which reaches to top of each leg. Turned on it gives ocillating massage by pressure running up each leg, wonderful relief. I don't know whether we can get it in UK. So many machines available there, not supplied for physio here, allowing more intensive longer treatments without needing the number of staff. Worth asking. Good luck.
It was, just had to lie back and think of lunch, with half a carafe of red wine!! 🍲🍮🍷unless you were on certain medication. A bar in the grounds, encouraged visitors on lovely day, as well as one in reception area. A separate restaurant to entertain visitors, choice of a more interesting menu, wine list. Can't think how why I was so keen to leave.
Yes - apparently wine used to be included in Italy but no longer. The food is rather better than the UK though! Can't boast a bar in the grounds - never noticed if the cafe has wine and beer.
Yes they are cutting down, when my daughter in law had the first baby 12 yrs ago all new mums got a bottle of good champagne, but second one 3 years later it was down to a half bottle. That's austerity for you.
I too am approaching first anniversary! It is so strange how GP's / Rheumy's are so very different. Mine are getting stroppy that I am not reducing enough!!! 15mgs to 9.5mgs struggling to taper just 0.5mgs to 9.0mgs. Your description sounds like your symptoms really swing between extremes. Does the inability to bend, get upstairs tie in with the early stages of an attempt to taper or follow a longer walk? If you are not already doing so it might be worthwhile to keep a daily diary to help you work out if there is a pattern emerging. Just a suggestion that may help to inform GP as well.
As you say, every GP/consultant seems to have a different idea on how to treat this illness. I am quite confident with my new GP, who seems to be know about PMR but I shall ask her if I can start trying to reduce from 25mg when I see her next week. A problem might be that we are going on a plane/coach/ferry holiday in ten days time (Island hopping off the West Coast of Scotland) so will be on the go I think for quite a long time each day. Just hope the weather will be good and I can sit and enjoy the views!
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