Experiences with PMR
Posted , 8 users are following.
I am taking Prednisolone for Polymyalgia Rheumatica and would be interested to hear about your experiences with this steroid for this illness. I took 15mg for four weeks and have been on 10mg for two weeks. My shoulders and hips improved quickly but my hands, wrists, ankles and feet are still very stiff. I realise it's going to be a long haul and that everyone is different, but it would be good to hear how you are doing. Also about side effects e.g. weight gain--is it inevitable, when does it kick in, can it be avoided/minimised with diet and exercise?
Would love to hear from anyone who is or has been here.
0 likes, 20 replies
Spammy
Posted
I thought like you that after feeling well after a few weeks that I was on the road to recovery but I am still going up and down after two years. It is something that you accept after a time and you just get on with your life as best you can. I have just come in from the garden to have a rest and have switched on the computer, it is good to talk to someone else and hear how they are. You do what you can when you can and rest when you feel like it.
Some days I am grumpy and my husband knows when to leave me be. But most of the time I am not too bad. I did put weight on but have lost it due to watching what I eat. Well keep up the gardening when you can and I must get back out there before it rains. looking a lot like it mightl.
Good luck
Spammy
MrsO-UK_Surrey
Posted
Coming down from 15mgs after only 4 weeks by a 5mg drop to 10mgs is quite a fast reduction and this may be why you are still experiencing such stiffness in various areas. Prednisolone is also available in 2.5mg and 1mg tablets. It's therefore possible to make a slower drop from 15 to 12.5mgs and it may reduce the symptoms for you if you increase back up to 12.5.
As for when to expect the weight gain, whilst some steroid-takers gain weight, others don't gain any at all. Certainly a good diet is important for all PMR sufferers, not just to avoid the weight-gain but also to keep the body at its optimum healthy level. A low carb diet is the best as many people find that high carbs and steroids are a recipe for weight gain. Also, there are also many foods that will help with the inflammation such as oily fish (also good to help protect the bones from the steroid-induced risk of osteoporosis); beetroot, garlic, and a large pinch of turmeric added to suitable meals.
As for exercise, at least a daily walk (only as far as is comfortable) is essential for helping to keep the muscles and the bones strong. Some people find that aquarobics is helpful and I have found that the best exercise for me is Tai Chi.
It's very much a case of finding what suits you but always remembering to pace yourself and not overdo it.
Do hope this helps to answer your questions but do come back if you have any more queries as there is a wealth of experience on this site and there is always someone to pass that on and reassure you.
Very best wishes,
MrsO
Mrs_G
Posted
I hope some of your other aches go soon or it is a case of going back to the Dr and saying this isnt working My Dr believes firstly in getting the pain under control and says that when you then feel better we can start reducing
Exercise is a difficult one with my first bout of PMR once I was OK on the steroids I went back to Aerobics and the Gym This time around I was still doing Aerobics but not the Gym but kept getting muscles pulls which were difficult to shake off so I gave up I have put on weight which Im not happy about but it is a case of one thing at a time as I had such a bad flare up to at the beginning of the year and had to become a couch potato
Im not doing any formal exercise now but with the garden , my horses and land I am quite active and I intend to do something in the Autumn when I wont be outdoors as much
Mrs O has given you good advise re diet and exercise and I think the best thing is try to move about as much as possible with rests in between but I dont think I would try any hard exercise that would put a strain on your muscles
A lot of people put on weight with steroids but others on here have lost weight !! Some people dont eat when they feel unwell I wish I was one of them !!
Best wishes
Mrs G
mrs_k
Posted
Sorry to hear you have PMR but you came to the right site for information and keep on coming.
However as you are new to pmr, visit www.pmr-gca-northeast.org.uk on that site there is a wealth of information and under Useful Information read the BSR Guidelines issued June 2009 on PMR.
There are articles written by Medical people and also by Patients for Patients on steroids, exercise, fatigue. There are also people's stories.
It does not have all the answers, no-one place does, but this site is the place for the questions, someone has been there, seen it, done it or might have a new slant on it. But always remember, carry a Blue steroid card, listen to your body and go with the flow.
Prednisolone is not the enemy the PMR is and at present there is no known cause or cure and it has a mind of its own.
Good Luck and lets hope it (the PMR) takes a long walk off a short pier quickly.
Guest
Posted
Thankyou so much for your very quick, warm and informative replies.
It is so good to make contact with you as I was feeling unsure of what to expect with PMR.
I identify with your good/not so good days and tiredness very much.
I love gardening and also am used to playing golf about twice a week so that is on hold for the time being too.
Your advice of 'listen to your body and go with the flow' is what I am trying to do especially on the exercise front although I am getting some excellent help from the physio at my GP's surgery.
Thankyou also for the oily fish, beetroot, garlic and turmeric recommendations - we do eat lots of fish but I'm upping our intake of the others - luckily my husband is happy to go with anything that may help!
Thankyou again and very best wishes with YOUR progress.
Gardening Girl
Dublin,_Ireland
Posted
Best wishes, Pauline, Dublin.
mollycoo
Posted
Would love to hear from anyone who is or has been here.[/quote:da55ec8f32]
Hi there, I'm newly diagnosed with PMR, and have been prescribed prednisolone 15mg. After 1 week there was no improvement, so my doctor started to doubt the diagnosis, but after a second week I am feeling less stiff and in less pain, and not needing painkillers which is good. In my case the legs are the most painful, the pain in the arms and shoulder is negligible. Too early I guess to notice side effects, except I do have a voracious appetite!! I do expect a weight gain, but am trying to eat healthily to minimise this. Good luck, and keep smiling, there are worse things to be diagnosed with aren't there? cheers, Mollycoo.
mrs_k
Posted
noticed you have posted about Migraine as well. Cannot help on that one, except to say the Fever Few tablets cleared my migraine up years ago.
There is loads of information on www.pmr-gca-northeast.co.uk which you might want to read, as you are newly diagnosed.
Also welcome, I just hate saying that word to new people, but you have found the right place for your questions.
Good Luck on this strange journey.
PS I meant to say, there is also a diet sheet provided by our local hospital dietician to help.
mollycoo
Posted
many thanks for the info and the welcome. I'm impressed with this forum, everyone seems so friendly. I have tried the feverfew tablets for the migraine, and tried cutting out different foods etc. but all to no avail unfortunately, however if I've stumbled across something in the way of help via the prednisolone, all to the good. Time will tell anyhow.
I did see a dietician prior to my PMR diagnosis, with a view to reducing my cholesterol as it was 6.1, and I didn't want to start taking statins. It's a whole new ball game though now I'm taking steroids. I'm trying to eat sensibly but have a voracious appetite I'm afraid, probably due to the pred.
Cheers,
Mollycoo
EileenH
Posted
One of the recommendations for avoiding weight gain with steroids is to keep carbohydrate intake down and protein intake up. The weight gain bit has two causes - many people find they just want to eat all the time which obviously doesn't help - and the other is that the steroids change the way your body's metabolism works and can lead to diabetes.
If you keep the carbs down you won't stimulate the production of insulin as much and that is what makes any excess calories in the form of carbs into fat deposits, especially around your middle and face - moon face and apple shape! I found that my swim rings started to deflate :lol: whilst I was in S Korea where I ate almost no carbohydrate so I have tried to stick to that since we've been back and I'm sure it has helped. I also feel better in myself.
Apart from anything else - if you eat a meal that is high in protein with some fat you feel full for much longer. It's the basis of the Atkins diet - and the \"new improved\" version includes veggies and allows a bit of fruit so it is much healthier for you than the original version. I'm not advocating full-on Atkins by any means but less carbs is good!
BTW - personally, I wouldn't worry too much about my cholesterol unless it got higher than that (it has it's uses, not least production of vit D in the skin) and if you have a family history of the relevant nasties. Low cholesterol can also cause some problems of its own. I certainly would resist statins - some are very closely associated with musculo-skeletal problems very similar to PMR and the companies didn't speak up about some of the problems found (naughty). Lots of doctors are totally unaware of what statins are capable of causing.
Luckily - wine doesn't have a lot of carb!!! :redwine: :bubbly: (Beer does)
EileenH
Dublin,_Ireland
Posted
As one of the minority who has managed to LOSE weight on the steroids :oops: , I thought maybe I should share my diet with you if it helps anyone trying to reduce.
As I am wheat intolerant, I eat a bread made with a mix of rice & soya flour.I have a couple of pieces of it toasted for breakfast with either a banana or marmalade & my first coffee of the day, alternatively I eat a load of mixed fruits with yoghurt & toasted seeds. Mid morning I eat more fruit or another yoghurt.
Lunch is usually grilled sausages & tomato or a tuna salad or homemade soup & toast. I might have another coffee at this time but any later and sleep is out of the question :roll:
Mid-afternoon is more fruit & then dinner is generally either fish or white meat with lots of veggies. I don't tend to eat after dinner, which I have about 7pm, unless there are wine gums in the house (would eat the whole packet without sharing !!) but I do enjoy my couple of glasses of wine :redwine:
I realize that my diet now is probably healthier than it has ever been in my adult life prior to developing wheat intolerance, but not any different to what it was before I started on the steroids
My GP feels that a lot of my weight loss can be attributed to a steroid induced muscle wasting, as both he & I can certainly see a loss of definement in my arms & legs..but reviewing this before posting I have just realized that my diet is probably on the low side as regards carb intake so I probably need to eat a bit more of them.
Eileen H....Thank goodness I was never a beer drinker...big no-no for us wheat intolerant folk :lol:
Be as well as you can everyone,
best wishes, Pauline
EileenH
Posted
It's one of the things I have never liked anyway so I wouldn't miss it but a friend of ours who has been diagnosed as coeliac in his late 50s desperately misses his beer! Well, he does live in Bavaria in southern Germany so it's even worse for him! Did you know that beer isn't taxed as alcohol there as it is regarded as a food :roll: :lol: ??
Since I was 18 I have lived in places where beer was part of the furniture (so to speak) but despite trying all the ones my other half has drunk the only one I have found that even comes halfway to being to my taste is one I absolutely wouldn't risk - German Weizen beer, made with wheat as opposed to barley! Typical! Still - there's always wine...
Must say - I wish I had your problem with weight. If they think it might be partly due to muscle wasting why haven't they given you some physio to build muscle? And that is also a reason for increasing the protein in your diet - that also helps avoid the breakdown of your muscles.
cheers, EileenH
Dublin,_Ireland
Posted
I have heard of that Weizen beer...my hubby sometimes goes to Frankfurt on business and that is what he drinks when there. He said it is lovely but quite strong :wink: .
I never liked beer at all & can't tell one from the other.The whole \"thats a good/ bad pint\" debate is totally lost on me.
As regards the physio, I do some light weights for my arms and legs, but the ammount of reps tends to be dictated by energy levels on the day :roll: One of my friends is a physio so she advised that and a daily walk at as fast a pace as the body allows. I have tried taking some high protein shakes, but find them very nauseating...so I think I'll have to try eating more fish & meat.
On the good news front, I have been alternating 15mgs/14 since monday & so far no problems
. Early days, but the last time I tried going to 14 i felt the impact almost immediately.
Hope the weather is better in the Dolmites than it is here...very dull & drizzly rain.
I am in happy mood today as I get my hubby back this afternoon..he has been away in Houston with work for last 10 days & even though he often has to travel, I really missed him this time...going soppy in my old age :love:
best wishes, Pauline
EileenH
Posted
The reps in exercises are a problem with PMR of course - I did explain in a post to someone once who was desperate to keep going as normal, which also meant still doing the same no of reps at the gym. Lots of mini-sessions would be the ideal I suppose. A daily walk as fast as the body allows - snail's pace comes to mind :roll: !
And the weather - yesterday was glorious sun after a couple of days with snow down to the village at the weekend - half a metre up top :lol: :ski: 4 weeks to the start of the season!! Today it's sort of high hazy cloud but dry - more snow on the mountains is forecast for Sunday (rain in the valley) but by then I'll be on my way to the UK. Where it will rain for the two and half weeks I'm there, no doubt.
better do some more work - I'm just procrastinating...
EileenH
Dublin,_Ireland
Posted
I have just been singing your praises to my hubby, now safely ensconced back home :D
You really are a fantastic asset to all of us on this forum with your endless research on our behalf and your insight into this condition.
I have found that having Pmr definately changes ones outlook on life...things that would have really annoyed me in the past just don't anymore (much to my children's delight)as I have realized that without full health, nothing else is really worth worrying about.
Our lotto here in Ireland was won at the weekend by one man....16 million euro 8) I met my close friend who has ovarian cancer for lunch today we debated what we would prefer.....poor but healthy won hands down..
There are some things money just can't buy as many well known folk would say if in a position to do so ...all Paul McCartney's millions didn't save Linda, Freddie Mercury could not overcome aids, and despite the best of medical care Christopher Reeve ultimately died from his paralysis. We may have an illness that impacts on our lives...but thankfully it is not going to kill us, so \"onwards and upwards\" as our golf club manager is always saying, & hopefully we will all come through this stronger for an experience that we really could have done without :roll:
Not only am I getting soppy, I'm also getting all philosophical now too....I need help :oops: :roll:
best wishes,Pauline