Wondering do I really have PMR

[Stanley123]

Hi I'm new to this,was diagnosed with pmr in Aug 16. Started on 15mg prednisilone took for 6wks pain in hips cleared but neck & shoulder pain still bad, advised to drop to 12.5mg felt ill again went back to 15mg after 2wks started to feel better.inflammation markers have never changed still staying high Gp upped dose to 20mg which I'm still taking getting disheartened.

[piglette]

What are your inflammation markers? Did they drop at all when you started pred? Perhaps you needed 20mg to start with.

[Stanley123 in reply to piglette]

Thank you for replying. The inflammation has never dropped since I started preds. My Gp did say maybe I hadn't started on the right dose that's why she upped it to 20mg. I'll keep going & see if it makes any difference at the next blood test. Thanks again.

[piglette in reply to Stanley123]

I should ask for a printout of your blood tests, I find that really useful and we are all entitled to them. You can then track what is happening. It does mean that down the line you can look back and see how things are going.

[DorsetLady PMRGCAuk volunteer]

As piglette says maybe you didn't start high enough. The fact you still had shoulder/neck pains would corroborate that, so really you shouldn't have reduced to 12.5mg, but I guess that's what you were told to do! The no change in blood markers would also indicate that the 15mg wasn't enough to get the inflammation under control initially, although it is a recognised starting dose. Hopefully 20mg will do the trick.

Just as an aside, the doctors may give you a reduction plan, but it's not wise to reduce if you are still in any significant pain ( some people are completely pain free, but some still have a little - so I won't say no pain) that means things aren't in control, and you will just get worse.

Straight after reduction you may have a few days where you don't feel 100% but that probably just steroid withdrawal which will go when your body adjusts to the new dose, if however the pain builds up after about a week it might indicate that the dose is not high enough. It's a fine balancing act, which you will learn to manage as you learn more about your body and PMR.

You don't say what your markers were at outset, but they should have reduced if the Pred is working on the inflammation, but they are not the be all and end all of things - the symptoms are really the key.

Sorry long answer.

[Stanley123 in reply to DorsetLady]

Thank you for the reply I still have a lot to learn about PMR. This site is brilliant learnt a lot already. Keep up the good work all.

[PMRpro Ambassador]

Has your GP considered that the neck and shoulder pain COULD be something besides the PMR? Such as myofascial pain syndrome. That is what causes my non-PMR neck and shoulder pain.

And it COULD be something other than the PMR we discuss here - the symptoms we call PMR are not the disease itself but are caused by an underlying disorder. If the 20mg doesn't help then maybe a specialist referral is in order.

Has the 20mg helped noticeably? If so, then don't reduce in 2.5mg steps next time - some people struggle with 1mg drops, lots of patients with PMR cannot manage 2.5mg. It isn't the same as the other situations where pred is used and then reeuced.

[Stanley123 in reply to PMRpro]

My Gp ruled out quite a lot of similar illnesses had so many blood tests for different things was beginning to resemble a pin cushion. After writing this post could not believe I am actually feeling better today shoulders & neck not as painful or stiff ,hopefully on the correct dose. Thank you for your help will remember the advice for reducing pred.

[PMRpro Ambassador in reply to Stanley123]

The latest recommendations for managing PMR do say "the lowest effective dose between 12.5 and 25 mg should be used" - and larger people need more than smaller ones, even though pred dose is not always tightly governed by weight.

You may need a week or two - lower doses need longer, logically enough!

Fingers crossed!!!!! But if it works - work on your GP to allow you to reduce at 1mg at a time! It does make it easier and less uncomfortable!

[Rokerman in reply to Stanley123]

Hi Stanley - my starting dose was 15mg and, although it certainly helped - it didn't have the miracle-effect that I'd read about and hoped for. Upping the dose to 20mg did start to make a difference and I've lowered to 7.5mg (since April) - it doesn't come without consequences however, and stiffness in the hands is there every morning, lasting usually until midday. At this stage, I'm opting for the 'dead slow nearly stop' reduction method and looking at 0.5mg reductions. SO - it will take quite a few months at least to get anywhere near zero.

Moral of the story therefore, is:

Be prepared for the long haul and don't be in too much of a hurry - your body is going to tell you what dose you need to be on!

[granelliheywood]

I am in my third year of PMR been yo yoing as you do with the pred got down to 5g then had to increase due to pain many times I have put on weight nearly 3 stone in that time because I seem to have a mental block about exercise and walking before PMR it was never a problem but now I just feel tired and lazy and if I do push myself the day after I am mentally and physically exhausted.Do I need a good shake and would I if I made more effort beat this.

[PMRpro Ambassador in reply to granelliheywood]

Is that a real or a rhetorical question?

I lost a lot of weight while still on pred and without doing a lot of exercise at first - I was on crutches and COULDN't do much, although I could walk a bit. But discipline in cutting carbs resulted in weight loss, in the end 36 lbs although I have put a few pounds back on this summer. Once you start to lose the weight the exercise becomes easier. But all I have ever done is walk. We walk for 30 mins every morning before doing the daily shopping in the village as long as it isn't raining/snowing/blowing a hooley. I know I really should do more but am too lazy to do so.

The only thing you should push is that first bit of effort to put the coat and shoes on and get out of the door - then you just need to walk in the fresh air. Don't try to do too much at one time - that is what leaves you feeling mentally and physically exhausted next day. Start with 10-15 mins and add a few mins every week or speed it up marginally but not so you get tired to start with. Two lots of 15mins is less tiring than 30 mins all at once if you really do get wacked. But with time - you'll feel up to 2x 30mins.

[granelliheywood in reply to PMRpro]

Don't know what a rhetorical question is, but thanks for the advise I will go for it with a bit more Gusto instead of feeling like I did when I was a teenager I was a lazy sod then but had no aches and pains.then again I may have been lazy but chasing the opposite sex and the like was quite energetic it must be all in the mind like everything else.

[PMRpro Ambassador in reply to granelliheywood]

A question you ask without expecting an answer - or maybe even wanting an answer. I could after all have simply agreed and said yes, you needed a good shake

[granelliheywood in reply to PMRpro]

wife says that but then again its her fault she feeds me such good food.

[PMRpro Ambassador in reply to granelliheywood]

Just ask her to feed you the same good food, just a bit less of it. And maybe a few less cakes...

[Rokerman in reply to PMRpro]

Or, ask her to chase you round the room for......no, no - better not go there!

[Stanley123]

Thanks everyone for your advice it's a great help.