Reduction Pain or overdoing it?

Sorry Elaine - the book I just read before the one for dummies is: Eating Alive by Dr. John Matsen.

jennissw I have just looked up on Amazon. It has great reviews! I have just ordered it. Thanks

Old Nannna - I - had no idea that I was supposed to give up caffeine. Is that right? I'll try anything that helps.

There is no no evidence that diet helps in PMR - although a lot of these ideas DO lead to a healthier diet and that helps in general.

The basic rule is: TRY IT for a while. If it works and you feel better keep doing it, if you don't notice a difference - do what suits you best.

And NEVER change a lot of things at once - it makes it harder to stick to and you also can't tell which thing is causing the change. It may be that simply giving up wheat would have helped - but you tried gluten-free. Sticking to gluten-free is hard work and very expensive (or some people find it boring). Wheat is the most likely problem if it is "grains" - and omitting only it means you can use spelt, kamut, rye, barley and oats to vary your diet and keep your intake of many vitamins and minerals that are a problem with gluten-free.

In any situation where you are taking a corticosteroid at a dose above about 7mg/day you are suppressing what is called the hypothalamus/pituitary/adrenal axis. It is a very complicated feedback set-up and leads to a range of hormones being made. With pred it means there is always a high enough level of a corticosteroid in the blood - and that turns off the switch that tells your adrenals to produce cortisol. It's a bit like the central heating thermostat stopping the boiler keeping the heating going when it is warm enough.

Why did I tell you this? Because the caffeine story is one which is claimed to make your adrenals work better because "caffeine is bad for the adrenals". Too much certainly IS bad for you - and that's why too many espressos will make you feel quite ill! So will loads of soda drinks - though the sugar in them is probably even worse. So yes, you will feel better if you normally drink a load of canned drinks or a lot of coffee - but it doesn't mean it's helping your adrenals recover. It just means you aren't going to get the bad caffeine effects - which you might well be more sensitive to whilst on pred for various reasons. But it is very unlikely to "cure" anything in the realm of PMR.

Thanks Eileen. I don't drink too much coffee. I usually have 2 teas first thing, a regular coffee mid morning then if I want anymore I drink decaff. I probably have two cups of tea in the afternoon.

I don't have soda drinks I am not a fan. So the rest of my fluid intake is water or green tea.

I haven't tried wheat free. But I eat very little bread/wheat products as they 'bloat' me.

I am grateful for your explanation. Makes a lot of sense.

I have my follow up appointment with the doc today and I will let you know how she views my (lack of ) progress on 15mg.

Elaine - what do you mean "lack of progress"? (Sorry if you have already said on another thread but I read posts from about 60 people a week on 3 different forums!!!!) but that might be indicative of something...

Eileen

Hi Eileen, Well the first doctor put me on 20mg and I was fine, trouble was he dropped me 5mg every 3 days. When I saw this doctor she is very clued up, thank goodness (this was on another thread, but I can't remember which as I recall you remarked you were pleased) and she put me on 15mg and was to see me in two weeks - which is today. After being forced to rest for a week with the chest infection I then have started to slowly get going. Small walks starting at 5 mins, or a couple of yoga stretches. or if I did some ironing I would only do half an hour at a time. I did a 20minute stroll and was in agony in my thighs again and they have not recovered and I am fatigued. I have now been to see her today and she is very conscious that there may be another problem if the 15mg is not doing it's job. She is referring me to a rheumatologist for an emergency appointment. In the meantime she has upped me to 20mg to see if it helps my discomfort (as it did initially). She has signed me off work for another 4 weeks. When I protested she says I am not fit 'Look at you'! she said. Gosh I must look awful! Anyway the right things are happening. So hopefully I will get some answers very soon.

Thanks for your help and concern

Yes - remember now! Sorry, I must sound like the average GP "Now tell me about your problems..." instead of them reading the notes - except they have them in front of them!

It is often a big problem trying to get down again if a drop has lead to a flare and you need more pred. However - you did respond to the 20mg quickly didn't you? A small number of people do need 20 rather than 15 for whatever reason - and in fact having had the infection that could well have lead to the 15mg not being enough to control the PMR. Quite a few doctors suggest upping the pred a bit during an infection - at any level.

But you do seem to have found a GP who knows her stuff - anyone who is atypical should really be sent to a rheumy so I do hope your rheumy is as good as your GP! Because she obviously also knows "urgent" is not the same as "emergency" - by a couple of months!

And I really hope that 20mg works well. If you get to a point of needing to consider a reduction before you get a hospital appointment don't try more than 1mg at a time - you may manage a lower dose going at that rate. But that isn't really of concern for at least a month!!

One doctor I know of commented that PMR is a very rewarding illness to treat: the patient comes in looking all hangdog and afraid to move and the face shows their misery - the next time they appear after starting pred they are totally different and smiling. I do still remember going to the GP 2 days later and saying "Look, I can move!" It was the wrong one though, not the one who knew about PMR, and the rheumy didn't see that (wasn't interested either but that's another story!)

All the best - do tell me if the 20mg achieves a result.

Thanks Eileen - I will keep you up to date as I know it is all useful and interesting for everyone. Even if it ends up being a misdiagnosis! Thank you as you always give such good advice and detailed information. Thank you