When you mention flares do you mean that you have been pain free, and now your're not , or do you mean that you have reverted back to how you felt at the very begining, with severe pain in many muscles. I have not been completley pain free since diagnosis in January this year, but it is a bearable discomfort, and have managed to reduce from 15mg to 8. My Esr and Crp had reduced to normal levels within 6 weeks, so cant use those as indicators.
Gabriella
It's my understanding that a 'flare' (or flare-up) refers to reverting back to original pain (or almost original pain). There are a number of PMR patients that are never completely pain-free.
My version of a flare is I am happily reducing very little pain and stiffness and bloods agree with this and then it starts to go the other way aches appear and my bloods get worse and I have to increase my steroids
I had to go from 4 to 15 at the beginning of last year ( I started on 20mg 15 months earlier so not quite back to square one ) and recently had to go from 2 to 5mg after I thought I had really cracked it and it was going away
So thats my version
Mrs G
Agree with that, Mrs. G. I find I am merrily ambling along when all of a sudden a rather large truck appears and hits me. Aches and the 'fluey' feeling first and then the pain appears. With me, this is over a very short space of time, usually 2 or 3 days when clearly the inflammation levels rise to the extent that the amount of Pred I am taking is just not enough.
Hope this helps!
Nefret
I have had PMR for nearly a year and have reduced to 9mgs pred - in my only experience of a flare up I had extreme pain only in my forearms, but have learnt that this has been experienced by others. An increase of 1mg per day for a month seemed to help me over this. The biggest difficulty for me at the moment is having the weight increase (about 1 stone) and not being able to do the exercise I used to. Even a short walk leaves me dripping in sweat - don't know if this is the illness or the steroids. Can anyone help? Also would love advise re keeping weight down as I am definitely eating more and find it difficult to cut back.
Nippy 
Keeping weight down !! Very difficult ( in my opinion ) as in a way it is comfort eating as we all get fed up because we cant do what we used to do and have more time on our hands resting !
It is the carbs we are supposed to avoid if possible and someone on the other forum is going to try and follow an anit inflamatory diet I am on holiday from the end of this week and after that I must get my act together re my weight as it soon creeps up
Re the sweats I have had them at night only ( not the menopause well past that !) but as the steroids dropped so did they I think it is a steroid side effect I tried taking Agnus Castus and that really helped Ive stopped now Im on a low dose Some others might be able to give you more help
Mrs G
Hello Nippy
Many people (including myself - well past the menopause :wink: ) have complained of increased night and day sweats when on steroids, particularly the higher doses, so it is possible they could be having the same effect on you when walking.
However, it is possible that the weight gain could also cause sweating on exertion.
Although the higher dose steroids increase our appetite enormously at first, this should ease on the lower doses. Meanwhile, to avoid too much weight gain it is necessary to reduce carbohdrates such as bread and white potatoes (substitute with sweet potatoes), parsnips, etc. These foods turn to sugar in our bodies and further aggravate any steroid-induced weight gain and could also add to the risk of steroid-induced diabetes.
Also avoid processed meats and sugar (the latter, together with too much coffee, can further stress the adrenal glands which have already been suppressed by the steroids.
I have tried to eat as many anti-inflammatory foods as I could such as oily fish (sardines (with bones - good for our bones), mackerel, salmon, trout, beetroot, avocado, garlic, turmeric.
Good diuretic foods to include are asparagus, garlic, fennel and melon.
I gained half a stone very quickly on a starting dose of 40mgs Prednisolone in 2007 (diagnosed with PMR and GCA) and although I already ate a diet full of fresh veg and fruit decided to research the best foods and those to avoid and as a consequence, avoided further weight gain. Since getting down to the lower doses (on half a mg daily now), with a bit of extra effort I have lost all the increased weight and more. The best news was the extra steroid fat disappearing from my cheeks and between my shoulder blades - I could now stand up straight again!
Do hope some of this may help, Nippy, but, rest assured that you will lose that extra weight as you reduce the Pred further especially with a little help from the right foods along the way.
MrsO
Hello Nippy -
Now that you are down to 9 mg of prednisolone, it may be easier to lose weight. I can tell you what works for me (I am only 4ft 11 ins tall so it is kind of important to keep my weight down and I try to respond to the slightest gain in weight).
I eat little and often - in that way my stomach never feels really empty and there is less temptation to eat a large meal. Also - one's stomach seems to get used to being satisfied by smaller portions. I try to eat less fat - no butter on bread or crackers, low fat yoghurt and milk etc. (I'm somewhat addicted to cheese though and buy a low fat - 30% less - variety). I also eat smaller portions of meat when we have it. I don't generally eat desserts or cake though I do allow myself the odd square of chocolate each day - one needs a treat now and then! Malt loaf without butter is quite good if you want something sweet but low fat.
Eating in restaurants can be a problem but I generally have a starter, followed by another starter instead of a main course. Restaurant portions of main courses are generally too much for me anyway.
I often have a small glass of wine or beer with my evening meal.
It's best not to eat too late in the evening - one needs to give one's body time to burn some of the calories of before settling down to inactivity.
I have to admit I do try to get in plenty of walking in a day - this might be more difficult for you.
Anyway these are just a few suggestions - small portions are the key - you could try using a smaller plate perhaps.
Hope it helps -
Cheers - Hilary
purplecat
Funny, we were just talking about different ways of eating. My Cousin (82) is a 'grazer' and has been all her life. Her weight is still 7st 4lbs, never been more and never been less. So 5ft and healthy.
Perhaps 'grazing' is the key, they do say that if your body thinks it is not going to get much food, it will turn the surplus into stores of fat, ready for the lean times.
Keep on grazing.
Hi all, yes what is a flare!! I don't know whether I'm experiencing a flare or not. 10 days ago after a reasonable walk, more than my usual 3 miles per day, I experienced pain in the right buttock, and down the right leg. It got worse and, after a couple of days the pains were stabbing pains on certain movement, something I have never experienced with PMR, now it's just general pain in those areas. Up to now I have not increased the pred, though I am sorely tempted! Two reasons I'm hanging fire for the moment, one, my 25th July blood test revealed ESR at 8 and CRP 2, (can things have gone pear shaped so quickly?) and secondly I see my rheumatologist on 19th September, and will be able to discuss it with him. I'm very reluctant to increase the steroids, as I've been doing so well up to now, reducing very very slowly, and at the moment on 5mg. I'm wondering if the pain is due to sciatica, which I've had before on the right side. There is no increase in stiffness, and I have no problem anywhere else. So the big question is ---is it a flare or not? How is one supposed to know? I dread bedtime, because I know I shall get very little sleep, I have an electric pad which soothes a little. I think I'll hang on until 19th, although during the night and in the morning, when the pain is pretty bad I'm tempted to dash for the pred, maybe that wouldn't be a wise thing to do. Hope you're all having a pain free day. Best Wishes, Molly.
Hi Molly,
This doesn't sound like a flare to me as I've been experiencing something similar. I'd got down to 2.5mgs by March this year then had some family stress - within a few days I started to ache in my shoulders, arms and hands and thighs. I was also very stiff in the mornings, so very similar symptoms to when PMR started. I went back up to 5mgs and this seemed to do the trick. I'm now slowly trying to reduce again and have managed to get to 4.5mgs over about 8/10 week period. However, about 4 weeks ago I was driving back from my daughter's when I had a terrific pain in my hip. When I tried to get out of the car it was as though I had pulled a muscle in my thigh and the pain ran right down through my knee. I'm pretty sure extra steroids wouldn't have helped as I find most of my PMR pains are bilateral, if one shoulder hurts, the other one does etc. etc. but this isn't the case with my hip/thigh/knee pain. Just the one side. Its starting to ease now, taking a long time though. I do hope you get some relief from your pain soon, but it doesn't sound like a flare. I wonder what others think?
Take care,
Love from Lizzie xxx
Hi Lizzie Ellen,
thanks for your reply. I have never had much shoulder/arm pain with PMR, it has always been leg and buttock pain, and more so in the right leg, but usually rear thigh, whereas this is front and side and inside leg, also some knee pain which is new, but it's the buttock pain which is the worst, pretty painful on walking at first, then improves after some time walking. I must say today I feel less pain and I had a better night's sleep. I take co-codamol, but can only tolerate 2 tablets per day as I find them very constipating, so I take the 2 very last thing at night, to hopefully get a decent nights sleep., that's the idea anyway. Being fairly new to PMR (11 months) and never experienced a flare, I don't know exactly what to expect. I think I'll hang fire until I've seen my rheumatologist next Monday, although last time I saw him I thought he was no more use than a chocolate teapot :lol: He said I was too young for PMR at 67----what planet is he on? So he's doubting the diagnosis but doesn't come up with an alternative except post viral!!! Doesn't think it's rheumatoid arthritis. I hope to see one of his colleagues this time and maybe get some answers. The first doctor I saw at rheumatology thought it was PMR, so there you go. Thanks again, and I'm sorry you've had more worry with your grandson. I hope he is on the mend again. Cheers,
Molly.
Hi Molly
PMR does seem to have a lot of varients doesn't it? I've never had any buttock pain, a bit of thigh pain (always in both though) but I do get a lot of pain in my feet sometimes :? I just know my hip/thigh pain isn't PMR because its a completely different pain. Too young at 67 for PMR - what planet's he on indeed :ufo: We've got people on here as young as 47 from memory. Anyway, hope you get satisfactory advice on Monday and if you're not happy with your Rheumy, change him (or her) :yikes:
Let us know how it goes next week and thanks for your good wishes regarding Jake. Just been down to see him and he's bouncing! Got about 38 tablets a day to take plus bloods everyday, but it doesn't faze him (just fazes Nannie :lol: )
Love from Lizzie xxx
Hello Molly
I'm with Lizzie in feeling that the pain you describe doesn't sound like a flare, well not in my experience at least.
As to your query as to whether it could be sciatic pain, I think that sounds very possible. I have suffered with sciatic pain for a long time due to a damaged lower spine. I've had two very long-term bouts with it over the years, the first lasting a year and the most recent one for 18 months+. Both bouts have miraculously resolved without treatment. I felt that the latest one occurred following going over on my ankle slightly and may have resolved due to weight loss, perhaps freeing up something around the area involved. The pain would stretch from my right buttock down to my foot and I could sometimes walk out of it but standing in a queue was agony and even slow walking around the shops would often see me searching out for a wall to lean back against to relieve the pressure. I do so sympathise if this is the sort of pain you are experiencing. 
I remember that first thing in the morning in particular when getting breakfast I would sometimes have to stop what I was doing and just sit down to ease the pain. Do you remember any occasion where you may have slightly tripped or do you know whether you have any problems with lumber discs in your spine?
It can be so confusing to have problems such as this when suffering from PMR but for the moment if you are free of your initial PMR symptoms and as your blood tests in July were so good, then if it was me I'd hang on in there at 5mgs. Hopefully you will see a rheumy who is \"more use than a chocolate teapot\" (love the description :lol: ) this time.
MrsO
Hi Lizzie Ellen and Mrs O, and many thanks. I'm so glad you both think this is not a flare, because deep down that's my opinion too. I would prefer it to be a touch of sciatica or a pulled muscle---who wouldn't? Going back to the day I first noticed the pain, the walk we had been on involved quite a few very deep steps, which I turned sideways so to speak to get down, and wondering if I pulled a muscle or something doing that. It's not that I'm not used to walking, before this set back I walked 3 miles every day whatever the weather (got an energetic dog) only managing about a mile at the moment. As I said I feel much better today, of course a half decent night's sleep makes a difference to me, I never could function properly without a good night's sleep.
Many thanks for your help and advice, we'll see what Monday brings!
Best wishes,
Molly.
Hi Molly Coo,
I'm coming in a bit late on this as I was away, but to me this sounds more like a pinched nerve in the back or a muscle strain.
I have Pmr and rheumatoid arthritis, and while walking up slopes is not a problem, I get a lot of pain in my knees and hips going downhill :roll:
If the pain continues it might be worth asking for a referral for an MRI of your spine, as you may have a disc prolapse that is causing the symptoms. The problem with having PMR is that we tend to attribute every pain we get with it, where-as there may be something else happening in tandem :wink: :wink:
Hope you get some relief soon,
Best wishes,
Pauline
Hi Pauline,
thanks for your reply. I too find coming downhill or steps more of a problem than going up, and I'm beginning to think this may be muscle strain. It just doesn't feel feel like PMR pain, but as you say if you have PMR, you tend to blame every ache and pain on that when it may be something else. I have had this sciatica type pain before the PMR diagnosis, and my GP examined the lower back and said it all felt fine. Having never had a flare, I thought straight away that that was what I was having, but I think now I may have been barking up the wrong tree!!
I'm happy to see what next Monday brings when I see the rheumatologist.
Thank you for your interest.
Have a good day.
Cheers,
Molly.
mollycoo - your GP has X-ray eyes does he? I had a lot of sciatic pain prior to diagnosis as well as pain in the sacro-iliac joints which improved with the higher doses of pred (above 12.5mg) and that does return a bit as the dose goes lower. The sacro-iliac pain is the worst - I can't lean forwards to do much at all, bedmaking, getting things out of bottom cupboards, that sort of thing, without getting pain and then a spasm of cramp. I do miss my Durham kitchen, no low cupboards at all, all drawers! How much the relief was the general antiinflammatory effect of the pred I don't know. Sometimes I think I would like a cortisone injection just there!
You need a totally different muscle set-up to go downhill - it has actually been found that you need to do both for the best effect on your metabolism so just using the stepper or the treadmill at the gym set at going uphill isn't as good for you as going for a proper walk along a real road that goes up and down! There is a whole department at Innsbruck Uni that looks at diseases of aging and how to prevent them - diabetics of the world, go for a walk!!!! Wish I could without feeling half dead at the end (I'm not diabetic btw)!
Eileen
Good afternoon everyone,
I've just returned from rheumatology, and saw a different doctor again this time. I told him about the right buttock and leg pain, I can feel a small lump about the size of a pea deep in the buttock, he examined me and said it is muscular, but not PMR related. this is the conclusion I had come to after discussing it with you ladies. The pain is a lot better but still there, but somehow I don't care so long as it isn't a flare :D He wants me to hold 5 mg until the New Year, and then reduce by half a mg every 2 weeks, but wants me to have 2 and a half mg tabs, he didn't seem keen on the alternative day method which I'd used to get down from 7 to 5. He said to use 2 and a half mg, so that I take the same dose each day. I've been doing 7676 then 6666 then 6565 etc, he didn't seem to think that was a good idea, having said that it has worked up to now!! I was told a while ago that I had baker's cysts behind both knees, he's querying that as there's no swelling at the front or side of the knees, only at the back, however he's sending me for a scan to find out. The right one is quite painful some days. Apparently nothing is done for a baker's cyst, unless there's fluid elsewhere on the knee and then they can drain it off. He wasn't too impressed that I wasn't taking AA but never mind!! I see him again in 6 months. Hope you are all having a pain free day.
Cheers,
Molly.
Hi Mollycoo
Im late on this as Im just back from holiday too
I pulled a muscle behind my knee and at first could hardly walk with it I had hot stone massage on it too get some movement back at all This pain didnt seem to go away completely and I would have minor pain and some real flare ups
I eventually mentioned it to the Dr and I went to see a Phsio The first one helped a bit but then I saw a second one who made me do some stairs and she said I was doing stairs sideways in compensation and I had to do them properly I had to really concentrate on this !! In all it was with me for 18months !! Now I am pain free there It would often flare up after flying and I think as I am very short I was really putting pressure on the knee on the deep aircraft steps sideways So I was making myself worse !
So consider a physio who will concentrate on your movements
Best wishes
Mrs G