what else can be done to help the PMR battle ?

I'm sure you have already read most of the comments on this forum, but the experts will probably get in touch with you.

The main thing your Dad is missing, by the sound of it, is REST!  Hope your Dad listens.

Hello jan, sorry to hear that your father has joined the 'club' but I'm pleased you're looking out for him. I am not medically qualified so I shall write about non medical things. When I was first diagnosed I found that I got quite tired quite quickly, was it the drugs ? Or was it because I was so eager to carry on with my life now that I was 'back to normal'. But my nurse told me to carry on doing everything and anything I wanted but just to listen to my body. If I begin to feel exhausted, slow down or stop doing what I was doing because my body was telling me it had had enough. I stuck by what she said and I've on the whole been fine. You say he was a joiner, and he still likes yo tinker about, that's great but just remember that any continuous movement with one muscle or joint will hurt in that area for a couple of days after. But I still walk, keep fit, clean two cottages, garden etc. I am 53 so I may be a little fitter than some? All the dose at once early in the morning is recommended. Diet, environment not sure on that one but I do try and keep myself fit as steriods can pile the weight on, although in my case it hasn't, however, I haven't lost any weight either.

15 mgs for 6 weeks, 12.5 mgs for 6 weeks followed by as long a time as possible on 10 mgs, PMR Bristol plan recommends up to 1 year, then a very, very slow, even slower than the Bristol plan reduction thereafter.

i also recommend vit c to help fight infections as steriods lower your immune system, vit d, calcium and magnesium to help keep the bones strong as steriods thin those out too. 

I say steer clear of alendronic acid and rely on yearly bone density monitoring, and don't let the drs insist on quick reductions or methotrexate as a substitute for lowering the prednisone.

the qualified members will wade in soon, with lots of advise Bourne from research and experience. Good luck with your father, it's not a nice condition to have, but it could be worse as no doubt you as a nurse will know all about.

christina

If you haven't already seen this

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find a link to a site with lots of info, all reliable and medically checked. It has stories from patients too which your dad might find interesting. Do I take it he isn't into forums? Though of course most of us are women!

I'll reply in more detail later - need to go to the shops before 12!!!!

Hi Jan, from my own experience, I felt great when I first went on 20mgs, last April. The relife from the pain was so good and the extra energy the pred gave me was an added bonus. As a result I didn't really slow down but as I started to slowly reduce I was hit with bouts of fatigue, it usually struck me about mid afternoon. However, once I lay down for an hour I was then ok for the rest of the day. I would advise your dad to slow down a bit and  not to fight the fatigue, if it hits him during the course of reducing the pred, listen to his body, he should reduce slowly on the lines advised in this forum, and he will be fine. 

You don't need to apologise for not knowing about PMR - unless of course you are a specialist nurse in rheumatology or geriatrics ;-)  Even rheumatologists often don't know much about PMR and there is a former GP on another forum who had patients with PMR but is now revising her attitude to it all as she herself has developed PMR!

There isn't a lot of evidence that diet makes much difference although one lady on here adds anti-inflammatory foods such a oily fish 3 times a week and uses turmeric in cooking and says she always noticed a difference when she hadn't stuck to "the usual". I've never really bothered simply because my type of cooking makes turmeric a bit difficult and oily fish isn't that easy to come by in the middle of the Alps - farmed salmon only and no mackerel most of the year! It has been shown in studies that a VERY strict vegan diet can alleviate joint pain in half of patients with rheumatoid arthritis and I know a few people have claimed it helped with PMR. But it is so strict that most people struggle to stick to it and give up - and the pain is back with even a small amount of animal protein. I was gluten-free when PMR started (I'm allergic to something in wheat) but here I eat rye, spelt and kamut and it doesn't seem to make any difference. I have been alcohol-free and have tried leaving out nightshade veggies - no difference. I know some people say they think that psychologically it helps being in control of what you eat. In that sense, allowing your father to just keep on as well as he can WILL be good because perhaps the worst thing about PMR is the loss of what we used to do - if he can continue doing what he enjoys then that will benefit him in the long run. 

Exercise is good, once you can get moving the stiffness improves sort of spirally, if you see what I mean. I had PMR for 5 years with no pred and managed it by struggling into a swimsuit and tracksuit to get to the pool and an aqua class - I showered at the pool and by the time I had done the class and spent 10 mins in the sauna/steam room I could move almost normally. I was always in pain so I wouldn't want to go back to that but I managed mild PMR OK by adapting how I did things. Then it hit like a 10 ton truck - and then it was truly OUCH!

The underlying autoimmune cause of PMR symptoms isn't affected by the pred but, as Liam said, initially the pred may outweigh that in terms of energy. As the dose falls then the autoimmune fatigue may come back - or it may never have gone away. Everyone is different. Lots of people find they have to rest during the day at some point whatever the autoimmune disorder - but that then gives them the evening so they go to bed at a sensible time without being bad tempered because of exhaustion. I never slept during the day (unless I fell asleep by accident) but I was usually in bed soon after 9pm and stayed there until heading for 9am! It didn't matter - I rarely watch TV or do the things many people do in the evening. It is really a question of what suits you personally. One young woman I know with lupus manages to run a business and care for 2 young children by ALWAYS having her nap, times fixed in stone, and if she thinks "I feel fine today, I'll be OK with a later/shorter/no nap" then it always turns round to bite her later.

Environment? Not quite sure what you mean by that. Most of us don't have a choice other than to get on with things and adapt as necessary. I suppose living somewhere without stairs is a decided plus - but actually once you are settled on the right dose of pred many things become possible again. I live on the 2nd floor in a block with a lift (regarded as a must for any newbuild building over 3 storeys here in Italy). I use the stairs now for the exercise but the choice was a godsend when I was really bad - it left me energy to do other nicer things.  I did notice a massive difference in the pred-pred days when I moved from a house with an upstairs and downstairs loo to one with just an upstairs bathroom - I could make a cup of tea or I could get to the loo easily when I was working on the computer!

I think if you can persuade your dad he has to admit when he has had enough and to take a rest he will probably be easier to live with! In PMR the muscles have become intolerant of exercise, especially repetitive or sustained actions - sawing for example or holding a phone to your ear will make the biceps hurt. GCA is a vasculitis of large and medium sized arteries, PMR is the result of a vasculitis, most likely in the microcirculation (research is currently underway on that, no results yet), that affects the blood supply to the muscles, especially the large muscle groups, shoulders, arms and legs. As well as being able to DO less, the muscles also take longer to recover afterwards - so having been for a walk that was a bit too long or uphill leaves you the next morning feeling as if you have run a few miles when not in training. The muscles also don't tell you at the time you are overdoing it - you feel fine and keep going when normally you would have given up.

The trick is to learn how far you can go and then work on that slowly to extend the time/amount. I skied a far bit even with PMR but at the beginning of the season I could only manage a couple of short runs without having sore muscles as if I had been skiing all day. So I rarely skied on consecutive days at first and never again fell for "I'm doing well, just one more run..." after thinking it once and getting half way down the run and suddenly feeling as if I had hit a wall! It was a real struggle to get back - and being so exhausted I could have fallen and really done damage. Short runs were fine - there was always a rest on the lift between but I couldn't ski the same distance in one without that 5 minutes sitting. So what I'm saying is that if your dad wants to do something try to get him to do several short sessions with breaks between - and in total he will manage far more than if he tries to get it all done in one go without a rest. If there is something he really wants to do - rest BEFOREHAND. That is something that often doesn't occur to people. And try to make sure there is somewhere to sit when he goes somewhere - I absolutely could not do parties or events where you had to stand for more than about 10 minutes - well I could but boy did I suffer next day! Walking around slowly was also difficult without the odd rest - and walking fast? What's fast?

Where do you live? There may be a local support group where he can meet others in the same boat - that is something that helps a lot of people find out useful ways of getting round the handicaps that are inevitable with PMR. But it sounds as if he is working on that himself. Men tend to be very different from women in how they experience PMR and how they respond to pred - and are often able to do much more physically than many women can. The often recover faster too. 

Just ask if you want to know anyting specific - someone will have been there!