PMRGCAuk
7,380 members12,104 posts

How much pain? Vs how much pred?

I saw my GP this week for the first time in about 8 months and obviously he was horrified that I was still taking 12mg pred/day 10months on.

But, I still can't get my arms up to, let alone above, shoulder height until lunchtime and wake as if my torso is in a vice. After tossing and turning thru the small hours.

Plus side is that my energy levels are pretty good, I've learnt to pace and probably achieve about 75% of my pre PMR activities.

Should I split my dose? Take more paracetamol, more hot showers? In the excellent book (Kate?), she talks about how much paracetamol she took, yet some of you wonderful aunties, recommend flushing out the inflammation with the pred.

I don't know what to do? (ESR and CRP both below 5)

18 Replies
oldestnewest

I think I would horrify my GP a bit more by being tempted to up my dose until I achieved a better range of arm movement and a lessoning of pain. Although your energy is enviable, it doesn't sound to me like your inflammation has ever been properly controlled. My starting dose was 20 mgs and apart from a lifting of mood, the first symptom to relieve was the awful stiffness that prevented, amongst other symptoms, me lifting my arms up above my head. You shouldn't have been left to suffer so long.

As you probably know from these pages the CRP and ESR levels are not a reliable indicator of your symptoms.

4 likes
Reply

For most PMR pain paracetamol won't do a thing. Kate says she used it for withdrawal pain - I and many others prevent the withdrawal pain by using a slow and graded reduction patterm. Paracetamol is not an innocent drug either - very bad for livers.

Of course your ESR/CRP are normal - you are taking enough pred to (eventually) eliminate the inflammation so the acute phase response doesn't develop to raise the markers.

What time do you take your pred? Have you tried taking it before bed so it is already working by the morning? Have you tried splitting yet? Have you ever been more pain free? What did you start at and what was the result?

Is this a GP diagnosis? Have you been investigated for anything else? Ankylosing spondylitis, for example, can present very like PMR but the pain is worst earlier in the night (say, 2 or 3am) and is relieved by movement.

Sorry - more questions than potential answers, but I think something is being missed.

3 likes
Reply

Many thanks - wondering if I should see a private rheumatologist?

Agree ref. blood markers.

Tried splitting the pred today but my legs have gone from under me!

Started at 20mgs last December with miraculous results but terrible fatigue, and dropped to 7mgs by beginning of summer, then 'flared' so went back up to 15 and have been dropping slowly and keeping a diary of activity to try and track the pred, activity and pain.

It is GP diagnosis, he also tested for Lymes and Lupus, but I think the miracle of pred made up both our minds.

And my liver function, chlorestrol level and thyroid function tests all came back within the normal range. I have low blood pressure anyway and presume my blood sugar was tested too.

I'm now 52 and obviously have the other autoimmune diseases - psoriasis, hypothyroidism, Reynauds....

And frighteningly, yesterday I walked the dogs first thing. Before taking pred, and the early morning stiffness was much less.

But am tempted by SheffieldJanes advice and to go back to 15mgs until this wretched pain is under control. My GP doesn't seem too bothered about seeing me and just leaves multiple retreat prescriptions for me.

Perhaps I'm just one of the worried well?

Reply

Symmetric psoriatic arthritis???

I don’t know much about it, but I think the presenting symptoms can be similar to PMR. I know my rheumie questioned me about psoriasis, not just in me but my family as well.

1 like
Reply

Soraya has already said what I thought straight away. Anyone with psoriasis must have PsA considered. It could account for night pain and the fact the walking the dogs helped...

I'm not sure about private - you still usually have to get a referral from a GP and even private may not get you far if you have a dud rheumy plus the imaging needed is very expensive.

Where are you? If you do go private you need a good rheumy to make it worth it - who will add you to their NHS list if they think it is needed.

But no, don't think you are one of the worried well - your GP is being self-satisfied. For a start I would go back to 15mg and see if you can get this pain more under control and when you reduce go just 1mg at a time and more slowly, 20 to 7 in 6 months is fast.

But you need an expert.

2 likes
Reply

I was dignosed in June by my GP who referred me immediately to a Rheumatologist. The NHS wait time was long so I reseached a private Rheumatologist that specilised in pmr and paid for a private consultation. He confirmed the dignosis, advised the mediction schedule and agreed to add me to his NHS list. It is worth it for peace of mind.

4 likes
Reply

I would suggest that you see a Rheumatologist privately for a quicker appointment. Not good that you don’t see your GP regularly and only collect repeat prescriptions.

2 likes
Reply

Worried well? I dont think so!! Sounds like the time to take charge of your own situation. I would probably return to 15 mg pred for a few weeks...then if all seems under control, begin a verrrry slow taper.

My PMR journey is 4 years long, and I am now at 4.5 mg pred. Tapering each 1/2mg drop over a period of weeks. No rush to the end.

Kind regards, Jerri

3 likes
Reply

Thank you friends. It's hard to ignore a GP. I am confident of his diagnosis - I have to be, but he really sees the pred as a race to zero!

Reply

It is only a race in tortoise mode...

3 likes
Reply

That's the wrong goal.

The actual goal is to control the inflammation so that you sustain the lowest amount of damage from the PMR until it burns itself out, while having the fewest and least severe flares (which only lengthen the course of the disease and result in a higher level of pred consumption in the long term).

Take your vitamins, eat the rainbow, avoid empty calories, exercise gently to maintain flexibility and slowly rebuild strength, get enough rest, and find moments of laughter and beauty and joy every day.

9 likes
Reply

Good Grief... Wise words and advice.

4 likes
Reply

Thank you all.

I've tried to remain on 12mg, splitting the dose but failing.

So I will now try going back up to 15mgs(and splitting the dose)

How long should I do this for?

Many thanks

Reply

At least until the symptoms are back to stable and the same as you were on the starting dose - don't rush to just do the dusting until you have cleared out the mess!

1 like
Reply

Ok, went back up to 20mg for 4 days (which was recommended to someone else on here - split 15/5). Perfect.

Back to 15mg, split 10/5 but still in pain from, say, 2am onwards. So that's telling me I should take some of my dose before bed? But I take my thyroid medication on the middle of the night (can't remember why!)

Thoughts please? Or do I decide the drugs don't work anymore and I need to try one of the steroid sparing ones? Metroxate or something?

Reply

No I don't think so - not yet! You have made too big a drop - bodies don't like it. You need to reduce in far smaller steps - 1mg at a time is quite enough.

But the 2am pain bothers me a bit - is your doctor sure it is PMR you have? Pain at that time of night is typical of another form of inflammatory arthritis which is sometimes misdiagnosed as PMR. PMR pain tends to be later and both would respond to enough pred.

Reply

Which other horrid cruel inflammatory arthritis are you thinking of?

PMR seems such a good fit with symptoms and reaction to steroids, but every time I try to reduce - BANG! Back with the pain.

Reply

Ankylosing spondylitis is one that a couple of friends with "PMR" eventually turned out to have. There are doctors who think it only happens in young men - no it doesn't. One eventually went to Prof Mackie in Leeds and happened to mention night-time pain - lightbulb moment for Sarah, she was sent for the right imaging and bingo, answer found. It responds better to NSAIDs strangely but they now use anti-TNF biologics for it - which do not work in GCA (and presumably PMR).

It might be worth discussing it with a rheumy.

Reply

You may also like...