Increased pain

[Freeman12]

Started pred 3 years ago for GCA and Polymyalgia 40 mg. Diagnosed also with cervical spondylitis.

I have managed to get down to 3 mg. Saw rheumatologist a year ago, I was having neck and shoulder pain which my rheumatologist thought was my cervical spondylitis. I was taking pain killers for pain waking me in night which seems very much like my PMR/ GCA I then continued to reduce pred. Been back several times to my Dr as I was not sure if it was steroid withdrawal. Now Dr tells me to increase so have gone up to 5 mg. How long do you think it will take to find out what is causing the pain as I don't want to be taking higher dose too long if it is the spondylitis? I know that you can take higher dose for so long before getting used to it. Do you know how long that is? My last blood result was 16 which Dr classes as normal. In the past it has been down to 2. Thank you in advance.

[SheffieldJane]

Hi Freeman12,

I have what is classed as moderate Cervical Spondylitis, which is actually quite advanced. This was diagnosed with a bone scan following an X Ray, several years ago, way before PMR. I used to experience permanent headaches, neck and back of the skull pain especially when trying to work at my fixed PC. These symptoms were mopped up with Prednisolone. I am currently reducing my Pred dose and am on 12.5. I fully expect my old friend to pop up again when I get down as low as you.

I do find the nature of the pain from CS sharper and brought on by certain postures and activities. It is also eased by pain killers. My PMR pain is more dispersed and random and has a kind of nauseous element to it, more like flu pains. These pains only respond to steroids.

I am not yet able to interpret my blood tests, but they were at 20 when the PMR was quite bad, so my guess is that you are experiencing inflammation on top of the Spondylitis . I found that a top quality mattress and low pillow helped the CS. I hope this is of some use, it is a mad balancing act. If only Prednisolone was a gentler drug. Good luck.

[DorsetLady PMRGCAuk volunteer]

Hi Freeman12,

It's very difficult to tell sometimes what is GCA pain and what from another illnesses. Trouble is, on high doses, the Pred is apt to mask all pains, and when you reduce it, you're never 100% sure whether the pains you've got are GCA or not. I have OA in knee and shoulder, and I was always concerned that any shoulder pain was GCA related, whereas it was usually OA shoulder, and thinking rationally about it I could trace it back to some particular activity.

As Jane rightly says other pains are usually relieved by painkillers whereas GCA isn't, and a "different" sort of pain. Can't explain what exactly -sorry!

As for how long it takes you to know what pain is what - that's really you monitoring your particular pains etc and analysing what's caused them.

As for 'getting used to higher dose' - you need to take the correct dose of Pred to control the inflammation at any particular time - unfortunately that varies from person to person and the severity of the inflammation at the time. As said - a mad balancing act!

By your blood test - if you mean ESR - mine was never very low, even on high doses of Pred. It's run in the high teens, low twenties for the last year (now off Pred) - Dr not overly concerned, says that's my norm!

You can buy orthopaedic pillows in various styles - might be worth considering - not cheap, but I find I sleep much better, and don't get woken up during night with shoulder/neck pain, so well worth it.

[PMRpro Ambassador]

As I understand it, night pain is typical of spondylitis - and not something that is entirely typical of PMR unless the pred has run out before the early morning when the cytokines are shed. Does it improve at all when you get up?

Your ESR at 16 IS in "normal range" - but that is a very wide range covering the entire population. YOUR normal is obviously more like 2 - so 16 is showing there is active inflammation. Is it rising?

Five mg is still below the level at which your adrenal glands have to produce cortisol so it shouldn't be too much of a problem to go back down. It is a very low dose (not as low as 3 of course) but still low. If it is going to make a difference you should know after a couple of weeks I would have thought - and again, if the pred is helping then the ESR should fall again so it should be checked every couple of weeks to see if there is a trend - which is more important than the basic figure.

Is it possible you have back muscle problems? I have back and neck pain that is due to myofascial pain syndrome and it is very common alongside PMR. It also responds to higher dose pred - and returns as the dose falls. Mine was helped by sports massage and myofascial release treatment and also Bowen therapy helped a lot for me.

[Freeman12 in reply to PMRpro]

Yes the pain almost goes as soon as I get out of bed although I can feel twinges when I move. This is during the day too. I have had two blood tests in the last 2 or 3 months and the reading has been around 16 or 18 which Dr thinks it's fine. When at my best it was 2. I have been on higher dose now for about 8 days but not seeing much difference in my pain level yet. The pain that I get are shoulder neck, under tops of arms, ( under armpits) back, hips and under back of top of legs. Also quite a sharp pain on top of shoulders where the bone is which feels deep in the joint when moving.

[PMRpro Ambassador in reply to Freeman12]

Then I'd be suspicious it is due to PMR because PMR pain doesn't go when you get up, spondylitis pain does. And I would be inclined to get to see that rheumatologist sooner rather than later. I strongly disagree with your GP's assessment of your inflammatory markers - they are higher than they should be.