Pmr and never pain free

What else do you want to have done? Pred is the drug of choice for managing PMR. you seem to be doing pretty well and are on a very low dose after 2 years. PMR burns out for only a quarter of patients in under 2 years, 4 to 6 years is a more realistic time frame for half of patients. Now, having achieved a low dose that is not going to cause a lot of problems you have to be patient and wait it out. 75% of patients are off pred in 6 years - the rest of us are stuck with it for longer but only 5% have it for the rest of their lives.

You sound to be describing trochanteric bursitis - that causes groin/hip pain and walking makes it worse. See my other post.

I lost 35lbs of PMR and pred acquired weight while still on between 10 and 15mg pred. It can be done by cutting carbs drastically - and I am not the only person to do so. There is no sign of my hamster cheeks now. I'm still overweight but not that bad and there is nothing to suggest I take steroids now.

Taking pred makes your liver release random spikes of glucose - which triggers release of insulin to deal with it. That on top of the normal insulin production when you eat carbs encourages deposits of fat in particular places. Cut the carbs and that is all reduced and your body uses up the fat deposits to make energy. It also reduces the risk of developing pred-induced diabetes. 

While cutting carbs drastically sheds weight, cutting refined carbs is better and healthier.  Refined carbs includes anything with substantial sugars (including juices, syrups and honey), flours (including biscuits, bread and pastries) and processed cereals (including white rice and pasta).  These carbs are typically low in fiber and give rise to blood glucose and insulin spikes. 

For decades I've struggled to maintain weight, so I doubt prednisolone weight gain will bother me.

If you want to use the low carb methods of weight loss then it is ALL carbohydrate that counts. The amount of carb you can eat and still lose weight depends on the person.

I had eaten virtually no "refined carbs" for several years because I am allergic to something in wheat starch. Remove wheat products from the diet and it immediately removes many of the things you mention, including jams, honey and so on. I never drink juices and ate little rice or pasta as my husband doesn't eat them. I still gained weight, partly with PMR and little exercise over 5 years, and later due to being on Medrol. 

Only when my carbohydrate intake was below about 50g utilisable carbs did I lose weight - and that includes fruit and root veg. I am far from alone. I too have struggled with weight all my life and the increase of some 35 lbs due to PMR/pred certainly bothered me. I lost it all on tightly restricted carbs. No other way had worked.

An interesting journey. 

Removing refined carbohydrates from the diet, as I have, is far from easy.  Almost all processed foods are excluded: just about anything sold in a cardboard box and most things in bottles, jars and cans.  I also restrict potato because it is high GI.  On this diet, I eat double the volume I did as a young adult and love it.  My diet is heavy in vegetables, fruit, nuts and seeds.

Your limited exercise won't help but diet, I understand, is the main factor in weight loss.  A diet relativity high in complex carbohydrate and fiber promotes beneficial gut bacteria, which is increasing considered vital for health, including obesity and mental illness.

At very least, a low carb diet removes refined carbohydrates which is all for the good.

I can exercise now, not as much of course since I'm 13 years older and lost a lot of fitness during the untreated PMR years and then a bad spell over 5 years ago with a ski injury, 9 months on crutches for achilles tendonitis due to a doctor giving me a quinolone antibiotic while taking Medrol and a severe atrial fibrillation episode that messed everything up. But It was then I started losing weight - so being on pred and incapacitated is no excuse for not doing something about weight gain.

I can’t help wondering what you do eat? I am currently trying the Cambridge diet which is low fat AND low carb. However, their own foods, heavily processed, are part of this diet. Most of the ones I’ve tried are not very nice. Are you able to give us a list of the foods which comprise your diet? 

You don't need low fat - the fat story in diet is quite discredited. You need some fat for satiety and it is also very necessary for nerve function. Foods that are low fat almost always have sugar and other "stuff" added to improve acceptability of the taste.

Heavily processed foods are a generally bad idea.  In North America at least they will almost certainly have a high proportion of GMO ingredients, not to mention all the other unpronounceable additives.  Real food, not too much, mostly plants is the way to go.

Plenty of quality fat is important.  Saturated fats are not so good despite all the recent hype.  The good fats include nuts, seeds, olives, avocado, oily fish, soy beans, virgin olive oil and unheated polyunsaturated oils.  Fats are less fattening than refined carbohydrates!

I know all about AF but, fingers crossed, not much about ski injuries other than bruised hips.  

Years!  How long was your PMR untreated and why?  I was on pred within a month of symptoms.

As it happens, I have a year-old list showing what I eat most days.

 - A large variety of vegetables (especially green leafy) and fruits.

 - legumes (lentils, dried beans).

 - seafood (fresh fish, wild salmon, sardines).

 - nuts (raw, unsalted) and some seeds (sunflower, green pumpkin, sesame, linseed).

 - limited whole-grain products: rolled oats, pearl barley, buckwheat, quinoa, pasta.

 - home-made wholemeal, sough-dough multi-grain bread, with seeds aplenty.

 - skim milk yoghurt, low fat ricotta, an egg.

 - avocado, olives, virgin olive oil, peanut paste, tahini, home-made hummus.

 - occasional skinless chicken.

As well as plenty of sleep, exercise and vitamin D, I minimize added sugars, flour products (pastries, breads, biscuits), saturated fats; trans fats; salt, and alcohol.  I typically have a vegetable and salmon omelette for breakfast; pre-cooked vegies with beans for lunch followed by yoghurt with fruit and seeds; and salad/sardines on bread for tea with fresh fruit.   Most take-away and restaurant foods are unacceptable.  I love food! 

Five years - I had textbook symptoms but no raised blood markers. Ever. The GP I saw just kept saying "there can't be anything wrong,  your bloods are fine" and I could see the "it's all in her menopausal head" developing. Stupidly I didn't work my way round the entire practice - I don't know if it would have made a difference as the doctor who DID recognise it was part time and on maty leave much of the time so getting to see her was next to impossible. Then I had a major flare and, at the same time, was stopped driving for another and totally incorrect reason so was totally housebound and unable to get to the gym that had kept me mobile for those 5 years. I managed to get out here to our appartment in Italy - where I even managed to ski - because I didn't have to cope with stairs at all. And the movement of skiing replaced the gym.

By the time I had to go home I had spent many happy hours on the computer and had worked out what it was I probably had. The GP still wouldn't try pred so I had to wait for a rheumatology referral which took less than a couple of months - very quick really - but the rheumy didn't agree. He wanted it to be an even rarer inflammatory arthritis until the x-rays said not. But he did give me pred for 6 weeks to cover a trip to the USA - I took the first tablets in the pharmacy when I picked them up at 10.15am. I went home and went to work on the computer having had something to eat downstairs before crawling upstairs - and at 4am got up and walked downstairs, made a cup of tea and carried it back up. Then I stopped and realised exactly what I had done. Normally! Something I hadn't done for years. The rheumy wasn't convinced, wanted to put me on sulphasalzine - which makes you UV sensitive so you need to avoid sun. I was about to move to Italy! But no other doctor has ever questioned the diagnosis since and I had had to find a rheumy here in order to be monitored on the sulphasalazine so I never started it.

Many thanks. That’s very useful.

Reading your account makes me glad I rely on Dr Google and happen to have an aged GP who prescribes on request.  My PMR was "diagnosed" by an osteopath - on my second visit - saying, "I have no idea what's wrong with you but try Googling PMR when you get home".

For two decades, I've been on mesalasine, a sister drug to sulphalazine, for ulcerative colitis, now dormant.  Checking Google today, I get the impression that sun exposure is less risky with mesalasine but it's unclear.  Either way, I'm in the sun with block-out, every day, without issues. 

Good - although the thought of applying sunblock almost all over every day from April to October really doesn't appeal! 

But sulphasalazine does not manage PMR - so it wasn't really ideal was it?

I only apply sunblock when I am more than ten minutes in the midday, summer sun.  I play tennis three mornings a week and use sunblock except for a couple of months either side of the winter solstice.  Melbourne is far from the equator.

I meant for me...