Among the many things I can’t quite understand...

[Devedaaee]

There is a lot of discussion about pred and tapering on the board, and how pred controls the symptoms of PMR. Yet a lot of people seem to have significant symptoms and disability even with pred. What am I missing?

[Rose54]

Hi

I spoke to my GP yesterday asking why so many GPs in the practice advised different tapering .I do try to see same GP but as some are emergency appointments have no choice who I see .

The answer is we are all different and reaction to pred is different in all of us she advised as normal listen to your body and take note .

Its the PMR that's in control the Preds only help

I am sure you will get lots of reply's its not so busy on here weekends

[DorsetLady PMRGCAuk volunteer]

Hi,

Some people don’t seem to get the full benefit of their medication for some reason, and the guidelines do say a patient should get at least 70%relief, and that’s true in some cases. Not everybody gets 100% relief - you obviously do, and luckily so did I.

I think also that lifestyles can contribute, if you are still working full time or in a stressful situation then it’s not the ideal scenario for autoimmune illnesses. Plus, many people have other illnesses as well, which make things more complicated.

If your illness is well controlled, then just be pleased it is.

[Hidden]

Many people have a few other conditions that impact on general sense of well being and mobility. As DL say some don't get the full relief from pred and some pain is from overdoing things it can cause delayed onset muscle soreness which doesn't help. At the end of the day pred doesn't cure PMR, it just managed the inflammation that causes pain, fatigue etc. So if your pred only works at 70% then you can see it leaves a lot of inflammation to get through.

[PMRpro Ambassador]

That there are add-ons to the PMR symptoms which can also cause pain but don't respond particularly well to pred. The level you achieve at the starting dose is a guide - but even that depends on you having been started on an adequate dose. The Recommendations suggest "the lowest effective dose in the range 12.5 to 25mg, exceptionally 30mg" - if your doctor won't even try that at the start if you have residual pain then you don't really know. Some of the add-ons might respond to 30mg oral pred - but will respond far better to local steroid injections or even other forms of management without the risk of side effects due to the higher dose. I, for example, have trochanteric bursitis and myofascial pain syndrome - both of which can be managed better in other ways than just upping the oral dose. Massage and needling techniques directed at the tight back muscles are particularly good for my add-ons, Bowen therapy from the right therapist was also magic.

You also have to be aware of your own body - and if you find a way of improving how you do then you need to be consequent about it. Some people feel a lot better on a low carb diet - not just because of the reduction of weight management problems or the risk of steroid-induced diabetes, but because carbs are pro-inflammatory and an overdose of sugar creates havoc. It may be alcohol, or nightshades, or dairy. None of them make the slightest difference to me - but damp and/or windy weather is a nightmare. It can be hot, it can be cold - as long as there is little wind and it is dry.

Everyone is different - no one size fits all, from dose to complementary therapies. Unfortunately doctors seem unaware of that!

[bunnymom in reply to PMRpro]

Does bursitis eventually clear up? I know steroid shots help but does it then go away or come and go? Thanks

[PMRpro Ambassador in reply to bunnymom]

Depends - it can clear up and disappear altogether - or it may happen again. My left hip tends to recur, the right not. I suppose it depends on the underlying cause.

[Devedaaee]

Thank you for these answers. To explain where I am coming from, I am diagnosed PMR, did a short course of pred, and am now off it. That’s not usual I know. Of course I can easily get back on and may well do so. But I can sort of live with the remaining symptoms, and I’m in two minds. But what do I know? I’ll write a bit more maybe when the mood takes me...

Thank you again for taking an interest.