Hi all I'm 67 and have atypical PMR. Been on steroids for 13 months but think I had it for 8 months before diagnosis. I was carer for my 91 year old mother who was disabled and had dementia so life was difficult and stressful? She died 18 months ago. I also had major surgery on my bowel two and a half years ago which left me with a lot of problems. I do feel there's a connection between my health and stress issues at that time and the onset of PMR but of course it can't be proved. Had so many side effects from steroids - hunger, weight gain, moon face, raised BP, memory probs, insomnia, hair loss, bruising, leg ulcers (better now), fluid retention etc etc. been yo yoing on steroids - started on 25mg and am now down to 7mg again - sort of ok.
What I really wanted to talk about is PMR and exercise. I was reasonably fit and a walker before my major surgery. Then the PMR came and even a walk of only a few minutes reduced me to tears. My pain has always been worse in my legs. So I've now lost muscle and my legs are so weak even though there isn't much pain. Stairs are terrible - I just don't have the strength. And I'm two stone heavier than a year ago so there's the extra weight to carry too. Two weeks ago I just couldn't bear my body - I just don't recognise the person in the mirror! So I've put myself on a sensible, controlled eating plan (really low carbs as recommended on this site) and have started pool exercises (have a pool very close by) and I am feeling energised and have lost 6lbs and I think my PMR is more controlled. Exercising in a pool seems to suit my body much better - it doesn't hurt. I do hope I continue...
So a really long post (sorry!) just to ask whether others have found that diet and exercise help keep PMR under control while reducing the steroids. Sue
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Your problems are so typical of this illness, despite you saying you have atypical PMR! Agree with the stress relation (I was carer for my late hubby, who not as bad as your mum, it was still stressful), weight gain, moon face etc....
I have found that swimming does help, although I'm not always sure my arthritic knee agrees, but certainly less painful than walking! As you say, the muscle weakness doesn't help either. I have bought a collapsible walking stick (you can get very stylish ones) and can be kept in your handbag and brought out as and when required, and ignored when you don't want it! Through pride I didn't want to get one initially, but it's surprising how most people become much more helpful if you are using one!
You also say you are sort of okay at 7mg, which indicates you are not really! I would say you have decreased a mite too fast. So would suggest you stay at that level for a good length of time to make sure you are okay - properly okay - before you reduce again. And if you don't already, use the slow plan and by 0.5mg at a time.
It's the steroids that reduce the inflammation, but you can help with a low carb diet, which will also help you lose the extra weight, and gentle exercise. Good luck, Dorset Lady
Dear Dorset Lady thanks a folding walking stick is a good idea and the slower reduction. Can you get 0.5mg or do you have to cut them? I do find swimming too difficult at the moment so hope to continue with the water exercises and diet. Going well at the moment. just taking it day-by-day.
You can cut White uncoated pills. Pill cutters can be purchased from local pharmacy quite cheaply , some are better than others, just ask for advice, and I find easy to use. Just be a bit gentle to start with.
Had some gorgeous meals in local, out of the way, tapas restaurants last week! DL
Think you might be able to get 2.5mg in coated variety but it would mean juggling about Probably too much hassle. Or you could take for example 6mg on day 1 and 7mg on day 2 etc, that would equate to 6.5mg per day! You just have to do what's best for you without it being too much effort.
I really sympathise, PMR really is debilitating, not to mention the steroids. I go swimming, I do back stroke as my shoulders are too painful swimming on my front. Someone the other day said how fast I was, perhaps he was just being friendly. You seem to have reduced your steroids very quickly though, better than me. I am not sure that the swimming keeps the PMR under control, but it makes me feel happier which I think is part of the fight. The only problem is I then go and have a coffee and biscuit afterwards, so cutting out simple carbs and gluten slips a bit.
Hi piglette wow I'm sure they meant it re your back stroke. I so want to get the steroids down so some of the side effects will go away but am so scared PMR symptoms will come back as they have done before. So maybe I'll stay on 7mg for a while. Such a fine balance. The exercise has definitely made me feel better and more positive. And I think the diet is keeping my blood sugar on a more even keel which helps the mood and controls the urge to eat on and off all day.
I've lost 40lbs on low carb - won't have lost much this week, been on holiday!
But as DL says - what's atypical PMR? Whatever the doctors try to tell us, everyone is different so you can't say this person is atypical and this one isn't! As she also says - "sort of OK" means you aren't. At this level 1mg is nothing in the great scheme of things and if you are notably better at 8mg - use it.
I had PMR for 5 years without treatment and found a daily session of aqua aerobics helped manage it not too badly in terms of movement - didn't do much for the pain though. I couldn't swim - far too painful for shoulders and knees - and it had to be a warm pool. I also did sessions of Iyengah yoga and Pilates - both a bit adapted - which were also great. I do miss them - but there are no affordable classes available here and I have pred now
I think when they said atypical they meant that I have all the symptoms but bloods all normal - ESR etc. had loads of tests to rule out other stuff and when I was put on 25mg I felt amazing in a couple of days. Felt like iI could fly! 'Sort of ok' means that I haven't really got pain just a body that doesn't really want to move and really bad exhaustion. But the exercise is helping and at least now when I feel shattered at least I've got a reason.
Just over 2 years to lose about 37lbs but it is much slower now. I'd like to lose another 4 or 5kg but I haven't been that weight since before PMR, over 10 years so that maybe wishful thinking!
I too have never had abnormal blood tests - except a raised alkaline phosphatase level in the early days of PMR, a common finding in PMR according to the literature but I rarely come across doctors who know. It's a liver marker. My symptoms were textbook - but not recognised by a GP with a fixation on blood tests! A different GP did know about it. The severity of some and the range probably suggest it was GCA affecting the arteries in the thorax with PMR symptoms.
I walk as my exercise - I don't feel confident on a bicycle - but even that is a bit limited because when I walk for more than a couple of hours the trochanteric bursitis raises its head to remind me it hasn't gone entirely. I was on crutches for 9 months 3 years ago because of that and other problems - so walking for a couple of hours is fine - but I have to rest the next day, not because i'm tired but because my hips hurt!
just joined the site in order to find some perspective to my wife's severe pain and stiffness, headaches etc.i have read 2 books regarding PMA and GCA and am becoming more familiarised with the conditions.my wife's alkaline phosphatase has been elevated in 8 consecutive blood tests, but because, as with your GP,her blood tests for CRP and ESR keep coming back normal he says that she has neither condition. i am now keeping a photo diary of her swollen temporal artery. he has now agreed to arrange an appointment for a temporal biopsy,still awaiting 3 weeks later.
If, while waiting for this appointment, she experiences ANY visual disturbances she must go to the emergency department immediately. GCA is treated as a medical emergency as serious as a stroke or heart attack.
I have had PMR for 3 years, now ok on 2.5 mg per day. Have been doing Aqua aerobics 2 times a week and 2 lots of Pilates for 2 years. At the beginning I did what I could.... Now I can do nearly all of it! Makes me feel much better and I can see it has toned me up! Had to cancel at times in the beginning if I woke up feeling rough or tired out. My club has a great jacuzzi, steamroom and sauna which also feels good if I feel sore. I do still get days when I need to rest a lot.... Infrequent now so I feel I am getting better. Somehow you learn how to manage. I would recommend trying to join a few classes and seeing how it goes. Forgot to say I found yoga manageable too but can't fit it in time wise at present
Suzieh your post is so encouraging. It really seems like exercise can help mentally and physically with PMR on a daily basis. I just hope I can keep motivated - it's only been two weeks.
Your experience is very similar to mine - mother sick in Scotland - me in Canada - lots of stress and back and forth to Scotland. Had flu shot and a sinus infection then BOOM couldn't get out of bed one morning and it was downhill from there. Was on prednisone for about 2 years gradually weaning off. I was fine for 2 years then back came the PMR with a vengeance this year. On prednisone again - low dose - so far only legs, buttocks and hips affected this time. Arms were useless last time as well as lower body. Lost all muscle tone in my arms. Been active all my life, racquet sports, swimming, bicycling and walking. I am gradually walking a little bit every other day and back golfing (taking electric cart). Will introduce swimming next week and see how it goes from there. Doc feels this should be short lived - hope he's right. Seems to be some common threads with this disease - stress, infection or trauma to body and flu shot (or similar shot). I think these forums are wonderful in that we get to see what is happening to other people and don't feel so alone.
Just to add that as a PMR sufferer for just over a year, I have continued with a weekly Pilates class, together with 10 or 15 mins of some of those exercises daily. I walk our dog several times a day for walks of 15 mins or so. I feel my muscle tone has decreased since I need to be gentle on myself when the aches at the start of the day are worse. Sometimes when I feel totally fatigued I make myself go for a walk rather than sleep; I feel energised afterwards so I am sure that is positive. I would love to find time to swim regularly but on the last occasion felt swimming was quite a struggle. Definitely for me exercise is good and posts here have advised me not to push myself too far when a stretch or movement is painful. Aqua aerobics would be great and I'd love to join a class.
Great suggestions in a useful thread...I must start using a swimming pool in winter, frrreezing, windy, horrible, raining..won't be able to swim due to the shoulder pain but could walk in water.. When outdoors becomes off limits with rheumatism, something else could be done. Yup, I too notice in weakness in legs. I can no longer use supermarket isles too far to get to. I wish there's a conveyor belt which could take me to the far end, where milk is. Something like milk should be located nearby the entrance for disabled and people with rheumatic conditions?
When you are shopping do you use a trolley or a basket? I always use a trolley even for a small shop, it does offer some support and makes life a bit easier - quite agree that what you want is always in the furthest corner! DL
Im a 61 yr old male. I quickly got the symptoms of PMR back in August 2016, about five months ago. Roughly four months ago after lots of tests for Lyme disease thyroid issues lupus I suggested to my GP that I had all of the symptoms of PMR. He thanked me for doing the research(!) and put me on 15 milligrams per day of pred. I have since reduced that dosage to 10 milligrams per day. I recently tried dropping to 7.5 milligrams per day but couldn't lift my left arm above the shoulder for 3 days! That was scary! Now I'm back to 10 milligrams per day and intend to very slowly reduce the dosage from there.
Sorry for the long introduction. I did want to say a few words about exercise. I have always been a very active person including lots of skiing and about 40 Years of rock climbing. I find myself choosing a pred level that permits me to continue with fairly routine exercises, including hikes up a long steep hill behind my house, and strength training. I find I can do these activities later in the day when the PMR symptoms have diminished.
Best news I can report about exercise is that I feel great right after finishing up the elevated activity and after stretching and showering. I'm left with a few hours when I have essentially no PMR symptoms, and that does a lot for my head.
I think there is some pay back the following day from these activities, maybe with some elevated joint pain especially in my hips . But I am generally convinced that the exercises are a good thing. They keep my joints mobile, reduce pain during and immediately after the exercises, and keep my muscle tone up.
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