I am 54 and just started on 15 mg of prednisolone for PMR. I am amazed at the difference in my mobility just from 3 days! I am going up stairs pain free, getting in the car without wincing or crying out in pain, and can finally bend down to pick up the post. I can turn over in bed without agony an don't dread getting up and the psychological effort that will take because of the pain that will follow. For hours.
My joy is countered by contemplating the side effects of long term steroid treatment. Any tips on diet and exercise? I am keen to get fit again (had a knee op prior to this) and not get fat! Also any advice on supplements? I presume once I am into this whole thing I will need calcium, supplements. I wish you all well and realise this is different experience for all of us while we all share the same condition. Thanks for reading. Jenny
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Hi Jenny, I agree it is a miracle after all the pain pre diagnosis. I would start to stand up waiting for the pain and it never came! I was really worried about the moon face and weight gain and heard giving up gluten and cutting out simple carbs could help which I did with minor lapses. It does seem to have worked, but I suppose it may be luck of course. You should be offered vit D and calcium supplements by your GP. Those are the only ones I take. I do try and boost up my calcium in food, also potassium and vit D although the main vit D comes from sunlight. I do try to stay active but I do get tired and I just give into it I don't try and push myself. I do find I have to turn down invites which is something I never did before. On the other hand it can be a good excuse not to do things! My rheumy gave me the impression that I should take pred and I could then carry on as if nothing had happened. I discovered this is not true and I do have to plan my days more and make sure that I limit my activities. Steroids are a wonder drug with side effects.
Thanks for replying. It's so useful to hear others experiences. I can't believe I'm not asleep! I am naturally an energetic night owl but have been surprised at how early I've been asleep lately with all the pain. Must be staying up with excitement to be able to twist and turn in bed again! night.
Hi Jenny and welcome! It's great to hear how well you have responded to the 15mg starting dose. Providing you don't consider reducing from that dose for at least 4-6 weeks, in the meantime giving yourself plenty of TLC, to allow the steroids to keep on top of the inflammation, all should be well. There is no cure for PMR - the steroids are merely controlling the inflammation until the disease goes into remission, so don't think about overdoing things just because you feel you can or you risk the symptoms stirring up again. When you do start reducing the steroids, the slower the better - less shock to your body.
You should have been started on a daily Calcium + Vit D supplement, such as Calcichew, which can help to protect your bones. However, if you haven't already had one you should request a bone density scan (DEXA) to check the state of your bones at the outset. You should also have a Vit D blood test - any deficiency can lead to pain in similar areas to those of PMR. In the case of deficiency, the basic Calcium + Vit D supplement will not be sufficient to increase the Vit D to within normal levels - that needs a 3-month course of high dose pure Vit D (Colecalciferol), following which the Calcium + Vit D supplement will maintain levels, plus, of course the sunshine of the summer.
Reducing refined carbs (bread, potatoes etc) from your diet can help to avoid the risk of steroid-induced weight gain. These foods turn to sugar in our bodies and could add to the risk of steroid-induced diabetes. It is best to avoid all processed meats and sugar. Known diuretic foods can be helpful in avoiding fluid retention, such as asparagus, garlic, fennel and melon. It can be helpful to include as many anti-inflammatory foods into your diet as possible, including oily fish (sardines, mackerel, salmon, trout), beetroot, avocado, garlic and turmeric. Coffee, sugar and alcohol are best avoided as they can stress the adrenal glands which will already be suppressed by the steroids.
Live (probiotic) yoghurt is a great stomach protector - whereas the stomach protection PPI's (Omeprazole and Lansoprazole) often prescribed alongside steroids actually did the opposite for me, causing nasty stomach/bowel side effects, the daily yoghurt with my breakfast before the steroids worked a treat and I never had any further stomach issues during 5+ years on steroids commencing at 40mgs.
Good luck, and do keep in touch and let us know how you are.
Thanks so much. Really useful information. I'm also wondering about the best sort of excercise. I definitely overdid it yesterday and feeling a bit rubbish today. Takes some getting used to, adapting what you want to do! I will be speaking to my GP today and will ask about the supplements and bone scan. Thanks again and I'll get the yoghurt stocked up.
Jenny, the best sort of exercise at this stage is a gentle daily walk, not too far at first and gradually building up as your pain/mobility allows. Some people find swimming helpful. We are all different in both the severity of the disease and our response to the treatment so it's really a case of finding out what works best for you. I was never completely pain-free down through the doses (very few lucky people achieve this happy state) but as things improved I joined a Tai Chi class and then later a Nordic walking class - both are wonderful, and the latter is especially helpful for those people who have balance problems with PMR.
Thank you. I have been managing a short gentle flat walk at the end of the day and will hopefully be able to increase this. So glad you have found something to help.
I do aqua fit as exercise, I started with a struggle especially dressing and undressing but now doing 2 classes a week. I think it has improved my mobility but not necessarily helped with weight but I am going to Slimming World and it is a struggle especially as I could eat for England but as with every journey it's little steps all the way. You have a good positive attitude which helps but don't put pressure on yourself as stress does not help. I have found overall one thing at a time. Good luck with your journey
Thank you. Some else mentioned aqua fit to me but the undressing etc did put me off. But hopefully as my movement is already getting much easier it will be manageable now. Im very good at putting stress on myself! I realise I need to accept things. I really want to become fit and active again tho. Thanks and good luck to you too.
Hi Jenny. I was diagnosed with PMR last December, and can readily identify with what you say re getting relief from the pain. I am not medically trained, but it seems you have already got some sound advice. I bought Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide", and I can't recommend it highly enough. I have managed to keep my weight down by cutting out all Biscuits cakes and sugars etc mainly because of the type 2 diabetics risk, but I do eat some whole meal bread and also some potatoes and rice. I also manage to exercise fairly well; my main problem has been not pacing myself enough, and remembering to rest. If you don't do this, your body will for sure soon tell you!
You can get Kate's book on Amazon, and it is not expensive.
Supplements - other than calcium and vit D I honestly don't think there are any that are worth it. If you do decide to try some don't EVER take them without checking with your pharmacist (not the counter staff) because while they may be OTC they are still effectively pharmaceuticals and can interest with the prescription meds you are on - and do the same for any new prescription meds, don't trust your GP! Don't be tempted by any supplements that claim to boost the immune system such as echinacea - the pred is to damp down the immune system.
Mention has already been made of limiting carbs - I have LOST the 40lbs I put on with one form of pred even though I have still been taking pred by cutting carbs to a very low level. No processed carbs of any sort generally (I do eat a dessert when out for a meal but it has to be a good one!). Three years ago I was on crutches for 9 months after a major PMR flare plus other delightful bits and could barely walk a few hundred yards. Now I can walk (at my pace) for 2 or 3 hours.
Even though you don't hurt as much any more you still have the illness: PMR is the outward expression of an underlying autoimmune disorder and that isn't affected at all by the pred, it just relieves the inflammation that autoimmune disorder causes and so the pain and stiffness. Your muscles remain intolerant of acute exercise and don't tell you you have done too much nor do they recover as fast so if you want to exercise build it up VERY slowly. Start with walking, preferably somewhere you can get on a bus and go home or abort the intended route and take a short cut back home if you hit the brick wall of fatigue - it is all too real. It is so embarrassing finding yourself forced to sit on a neighbour's wall... If you aim for a park bench/cafe/friend's house where you can stop and have a rest you will probably find you can walk much more in total. Or doing 3 x 10min round the block gives you a half hour of exercise you can manage without aching the next day whereas 30 min in one go is too much. Don't try to hurry - walk at a comfortable pace, you will get faster with time as well as being able to go further.
I had PMR for 5 years without being on pred - it simply wasn't diagnosed. During that time I did aqua aerobics every morning Mon-Fri. I got out of bed, put just a swimsuit on and tracksuit. I showered at the pool before getting in the water. I did the class at MY pace - I had discussed it with the instructor beforehand. Aqua is hard work - 7x more than on land - so I didn't use the foam dumbells/woggles to start with. I did everything rather less enthusiastically and stopped before the end if I was tired. Another lady with ME/CFS did the same - and we both built up what we could do over time. After the class I used the sauna/steam room for a short time. I just wrapped myself in a towel or bathrobe and didn't do any energetic towelling down, put on undies and the track suit or a t-shirt and skirt/easy trousers to go home. After some time I also could often manage Pilates and Iyengha yoga, both adapted by superb instructors, and both of which helped flexibility. Having done that I could move for the rest of the day. The earlier in the day the aqua - the better day I had.
And yes - overdo it on a good day and you will know about it the next! You have to learn to pace yourself - and be strict about it! Don't make the mistake of thinking "I feel fine, just one more..." - I ended up being stuck half way down a ski run for thinking that! Break any task up into bite-size chunks with rests between. Avoid repetitive actions, that is what tires your muscles more than anything - washing windows, sweeping the floor, walking up too many stairs, cycling. I couldn't do anything that involved my arms without awful problems - changing bedding was a nightmare!
You will learn what you can do - but make sure you learn, make a note and do less the next time. Don't let people talk you into thinking you can manage a bit more - it is all too easy to make your muscles ache so much it will take days to recover. Everything you do is more like running a couple of miles without training. You will get there - but slower. Don't plan two consecutive days with things that are energetic or that you MUST do - keep flexibility in your programme.
Hi Jenny -- I was diagnosed at a slightly younger age than you (52), around four years ago. You've had some good advice but will add my own experience -- starting, like others, with cautioning about overdoing thing and being aware that the preds is just controlling the inflammation and it will take time for it to help to very gradually help your body to get things under control. Unfortunately too -- but I feel it is important to say this to give a realistic idea of what generally happens with PMR! -- most people do feel their best at this initial higher dose of prednisalone, which tends to transform a person from having crippling pain to feeling like they can do anything. In part this is because the dose is fairly high at this point and in part because this dose also tends to remove all the little niggling pains that may have been there for ages due to simple ageing and life activities (why preds was initially believed to be a font of youth drug before the medical world discovered there could be significant side effects too!). Preds can also make you feel really hyper and energetic and interfere with sleep at this dose.
Like you, I actually found I slept better after going on my initial 15mg dose, I think because I was so exhausted from lack of sleep due to pain. That said, once I began reductions, I never got the same level of sleep -- I had what is probably the usual experience of again, not being able to roll over any more, having to painfully sit up first to roll over; pain in legs and restless leg syndrome; and most painful of all, my knees would lock; just kind of freeze and to move them again initially would really hurt but then the joint would unfreeze. This continued for most of the time I had active PMR (2 years). But all people are different. I say this mainly to note that only the GPs and rheumatologists seem to think we take meds to be pain free for the duration, it doesn't work like that for almost all of us patients, as individual stories and Kate's wonderful book on living with PMR and GCA makes clear. If there hadn't been support places like this, I'd have wondered why I couldn't reach the sustained, pain free model after that initial 15mg dose and perhaps been argued into additional meds like methotrexate (which my rheumatologist wanted to use just generally, but I did not).
Reading many of the threads here and the materials at the PMRGCAUK site and Kate's book will al be helpful!! I returned again and again to read other stories and chat with others, to get a sense of whether what I was going through was typical and get helpful advice.
I did not gain weight from steroids, I was actually one of the small number who actually lose some weight... so there are varied experiences here too but I did carefully watch my diet so perhaps that was a key factor too. I tried to eat balanced healthy meals (which I like anyway) and avoid snacks and biscuits/cookies and sweets. I walked and walked -- because I have dogs -- but my mobility and balance were quite compromised and I was slower and had to be very careful. I also swam which I do recommend as perhaps the best of all exercises because it gently works all muscles. I actually found, even before I went on preds, that a 45 minute gentle workout (I have been a fitness swimmer for years and do lengths in varied strokes, but aquasize is good too...nb frog kick with breaststroke was impossibly painful so stick to other strokes or a kickboard) would start with a lot of stiffness but by the end almost all my pain would be gone and I'd stay almost pain free for several hours after. All research indicates continuing to do exercise, without overdoing it, is very important and even if it takes real effort especially at the start of a walk, say, it brings benefits throughout the day.
I did slow reductions and it took me two years to go off preds. Even then, as Kate's book notes is typical, it took another two years for me to return to something close to where I was before PMR (many don't have that level of recovery; again, it all varies). I'd say even though my rheumy gave me the all clear to go off preds, due to return of flexibility and being down to .5mg preds, it was still another year for a lot of the stiffness to go. That said: two years and a month after going off preds, I have taken up running (I do 5k every other day) and horseriding. I can climb over a fence with ease. There was a point with PMR when I got trapped in the bath and on the floor due to stiffness and pain!!! -- so Im a long way now from those days. I think I wanted to start a gentle running programme simply for the joy of being able to do something I'd have once been indifferent to, then couldn't do... and now could do, after the years of disability.
I also changed my life to make it less stressful; I've no doubt stress helped to trigger the PMR (though I am in the genetic background more prone to it; Northern European background).
On supplements -- your GP or rheumy should have definitely prescribed daily Calcium/Vit D combination supplements. Best practice is you should also have had or go get asap a bone scan (DXA scan) to get a base level reading; especially important for women, if you haven't had this done before. I also took a multivitamin and a supplement called Zyflamend Whole Body, I'd take one or two daily. I'm not an advocate of herbal remedies etc but this has had some good results from clinical studies.Also: yoghurt or probiotic drinks for helping the stomach deal with the steroids.
Wow, thank you so much for all that information.Its so helpful. I have just spoken to my GP who said I don't need the calcium supplements yet as he will see me in 3 weeks with bloods taken in 2 1/2 weeks and will determine the diagnosis. It seems pretty definitive to me at the moment but I am only on my 3rd day of prednisolone. Everything you've said really resonated with me, I got stuck in the bath!!! I love baths and felt able to risk it on a good day. arghhh. I will look for the book and thank you again for taking the time to reply. It does help. So pleased about yor running. jenny
Welcome to our club. I would re-iterate all that everybody else has said.
After all those months of pain, the feeling of euphoria is quite overwhelming. The steroids not only take away all the pain, but they, at first, give you a feeling of invincibility! So full of energy, unfortunately in my case at 2.30 in the morning! But, sorry there always is a but, you still need to be aware that all that pain is only controlled - not gone. So listen to others, you need to pace yourself. Not try and do everything at once just because you feel so good, very difficult after months of feeling like a 90 year old.
One of the main things is to let friends and family know that you haven't suddenly morphed into superwoman, you still need their help and understanding; Kate's book as recommended by Charlie1boy is excellent at explaining things.
To quote a couple of over-worked phrases - you are on a journey, and some days are better than others. Some of that is in your hands - some isn't.
Take care, and don't try and reduce too quickly no matter what the doctors say! DL
Thank you. I think I am in danger of telling everyone I am going to be fine now thank you and can get on with everything myself! I am moving house hopefully this year so will need to rope in friends still by the sound of it. Its hard isn't it when you want to be independent and yes spent some time feeling like a 90 year old. I will definitely get the book. Thanks again. Jenny
You're welcome, and don't forget, we are always here to help. No matter how silly or insignificant the question may seem, you can bet your bottom dollar that someone has already been there. And don't think "oh its been asked before, I feel an idiot asking again", it's much easier to ask again rather than try and trawl through earlier posts, and things change, so any answer given a year ago may be different from today's answer.
Would also agree with Pipstrelle, a walking cane is a good idea. I have OA in my knee, so I use one when required. It's a fold-up one so fits in my handbag, but it comes out when there are lots of crowds about. As she says, invaluable when boarding planes etc. The trouble is, with this illness you look good on the outside; trouble is people don't know what going on inside!
If you want an instant flare - try to move house on your own! Get a firm to do everything possible - it may sound expensive but not half as expensive as putting yourself back to where you were a few weeks ago. There is a lady on another forum who has just had 3 months of feeling dreadful after moving from her big house to a retirement flat. She thought she'd shared out the tasks enough but that left her struggling and then a dose of flu some weeks after floored her completely. It isn't worth it!
Picking up on the other posts - some people found that Nordic walking poles helped them regain balance that had been compromised by PMR. You are using 2 and it helps walk straighter and eventually faster and further. Some members of a support group some years ago did the Nordic walking course Age Concern was offering at the time. One was able to stop using a zimmer frame after a few months.
And don't think that that suitcase with wheels will be easy to use - you will still get aching biceps and if you have to carry it will really know about it. If you are travelling really think about the process - and ask for assistance. Then you won't have to cope with carrying a case or rushing to make a connection - because one thing you CAN'T do with PMR is hurry...
Have to add that that it REALLY helps to learn to not feel intimidated to ask for help! I struggled, then learned to ask for help to lift things, move things, put a suitcase into or take from the overhead compartments on planes, up or down stairs... I also boarded in the early 'people who may need an extra bit of time' group as otherwise people would run me over boarding planes! (you discover how darn RUDE people are and how thoughtless about people with a disability from illness, age or anything.... but also how kind many people are). A good investment is to try the charity shops for a stick/cane or buy one -- would really have helped in winter and in crowds and also would stop boarding staff asking why you are boarding early...
Hi Jenny. I could have written your story 11 months ago. You will find this group invaluable. I too worried about the side effects of long term use of prednisone but the alternative is ??? nothing! Fortunately I am down to 3 mg. a day with an advil to kick start my morning. My Crp's went to normal limits right after initiating pred. (I was started on 20) You will not gain weight if you watch your intake and exercise regularly as your muscles allow. Just don't overdo it. I suffered one flare at Christmas & had to go back up a few mgm but really, I just did too much! When tired, lay down a bit to give your body rest. I do meditation while resting because I can't seem to nap during the day. The best book I've read on meditation technique, and I've tried for years unsuccessfully, is 10 % Happier. HIS DOWN TO EARTH approach is a fit for me. Make sure you have your vit D3 tested. Mine was very low & I was started on 5000 mgm daily & now take 2000. I take a cal chew daily . Have a bone density done too. Hope this helps. Good Luck!
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and I'd stay almost pain free for several hours after. All research indicates continuing to do exercise, without overdoing it, is very important and even if it takes real effort especially at the start of a walk, say, it brings benefits throughout the day.
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