Low dose pains

[Suzan62]

Hi there, I’ve been on pred for around 7 years now for PMR. I’ve managed to get down to 1.5mg a couple of times but I’m struggling with shoulder and back pain again. I wasn’t sure if it was due to PMR or the way I lie in bed but it’s not going away after trying all kinds of things so I’m thinking it probably is PMR related. I seem to be able to get to 2mg okay but whenever I lower to 1.5 the pains return slowly. I haven’t had any tests other than a bone scan since starting pred but I’m seeing a doctor on Friday and wondered if I should request tests and if so what kind.

Many thanks, Sue.

[SheffieldJane]

MRI’s are expensive but your pains have been going on for a long time. You maybe able to discover if anything else could be causing this pain.

[Suzan62 in reply to SheffieldJane]

It does feel like PMR pain and an increase in steroids will confirm that so I think I’ll try that first and see.

[Ritz02]

Has your Rheumy suggested any treatment changes . I was switched to a DMARD and have maintained on that

[Suzan62 in reply to Ritz02]

Haven seen a rheumatologist since my diagnosis. He gave me a tapering plan but it wasn’t as simplistic as it seemed. Thankfully I found this site as the advice I’ve received has been very helpful.

[PMRpro Ambassador]

You are never reducing relentlessly aiming for zero come what may. You are tapering the dose to identify the lowest effective dose that gives the same relief as the starting dose did. You find it by tapering until you get to a dose where the symptoms return 0 and go back to the previous dose. When that happens more than once at a similar dose - that is the sign you have arrived. I would say you have got there: 2mg. It is a really low dose, almost no adverse effects associated with it and you would be fine to remain there longterm. Prof Dasgupta, a top GCA expert, told us during a seminar during Covid that he often keeps patients ar 2-3mg longterm as it reduces the risk of relapses. Here in mainland Europe it is quite common for PMR patients to remain on such low doses for years - my own rheumy told me that and he is probably the top expert in PMR in the world.

Whatever some doctors will try to tell you, PMR doesn't last 2 years and poof, it is gone. In a very early study, 40% of patients were still on low doses of pred after 4 years. But that is probably also the study that gave people the idea it lasts 2 years as they say:

"Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. The data support the concept of two patient populations--one with limited disease and another requiring long-term therapy"

You are on a dose that is safe - there is no reason whatsoever to introduce another drug or be concerned at not being off pred, it is very common.

[Suzan62 in reply to PMRpro]

Thank you, that’s very reassuring to hear. I thought I might need tests as I’ve heard various ones mentioned but I wasn’t sure. I’ll go back up to 2mg and hopefully the aches will subside again. Many thanks.

[PMRpro Ambassador in reply to Suzan62]

If they don't, try a few days at 7mg before dropping straight back to 2mg and see how that works. That is the standard flare protocol.

[Suzan62 in reply to PMRpro]

Oh right ok. I will definitely try that if this doesn’t work. I was thinking of increasing a bit higher for a few days but wasn’t sure what to increase to or for how long. Was thinking maybe 5 mg for 5 days but will try 7 if that’s the standard flare protocol.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

This link contains usual advice for a flare-

healthunlocked.com/pmrgcauk...

[Suzan62 in reply to DorsetLady]

Thank you, that is very helpful information 🙂

[PMRpro Ambassador in reply to Suzan62]

That's just what is suggested - we find that a decent increase for a few days works better than creeping up or just adding a couple of mg, 5mg might well be enough - always difficult to forecast.

[Suzan62 in reply to PMRpro]

Ok great thanks 👍🏼

[Suzan62 in reply to PMRpro]

Hi again, I increased to 5mg for a couple of days but didn’t notice any difference so increased to 7mg yesterday. I know it’s only been 2 days but I’m not noticing any difference yet, arm’s, neck and shoulders still aching quite a lot. I’m wondering if I left it too long before I increased from the 1.5mg as I was on it for some time without realising my aches were due to PMR. I think I was ok on 2mg from recollection but I’m not absolutely certain as I thought the aches were due to lying with my arms under the pillow at night so I may have had the pains at 2mg too, I just can’t remember. Anyway, I’m wondering if I need to wait a couple of days now to see if the aches improve or whether to increase some more, and if I do increase, will it be a case of jump back down to 2 or 3mg after a couple of weeks or will I need to come back down slowly (.5mg at a time). Sorry for all the questions and thank you so much for all your help and advice 🙏

[PMRpro Ambassador in reply to Suzan62]

I hope you are just being impatient - a couple of days isn;t long and it is often harder to get things under control after a flare. But maybe a week at 10mg would be preferable to trying less for longer - it is the time rather than the dose that seems to be crucial.

[Suzan62 in reply to PMRpro]

Hi there, update on increase… had 3 days on 5mg and today is my 7th day on 7mg. There is some improvement but I’ve still got niggling aches and some stiffness although definitely not as bad. I’m not sure what to do now. I’m guessing I might need to increase a bit more but I’m not sure how it goes with tapering then. I know it says to stay on the higher dose for a few days then drop back down to just above where the flare started but I’m not sure what the maximum time is that I can stay on the higher dose and still be able to do that. Also the fact I’ve increased more than 5mg. do I still drop 5mg or however much I’ve increased by? I’m assuming that if you’re on a higher dose for over a certain length of time then you need to taper more slowly, is this right?

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

You can stay on higher doses for up to 14days, you still have a few to go.. so I’d go for that…

.. and maybe drop down in 2 or even 3 steps… for 5-7 days each step - then down to 3mg (no lower) and stay there for at least a month before you even think about restarting tapering proper.

[Suzan62 in reply to DorsetLady]

So go up to 8mg maybe for a few days then come down say 2mg at a time?

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

If you go to 8mg then either come down as follows-

3 steps, - 6mg, 4mg, 3mg.…

or 2 steps - 5mg, 3mg.whatever you feel happiest doing…

[Suzan62 in reply to DorsetLady]

Thank you, I’ll give that a go…

[Suzan62 in reply to DorsetLady]

I’m just wondering what happens if the pains haven’t gone by day 14? I’ve taken 8mg today and only have another 3 days to go. It’s an odd sensation that I’m experiencing. Twinges in the muscles in my upper back and neck. Presume it’s the pred attacking the inflammation. Just not sure it will clear by day 14 and what to do if it doesn’t?

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Who knows what will happen in 3 days... if still the same then you can stay on higher dose... but that may mean you cannot reduce as quickly as we normally suggest - and/or get medical advice.

[Suzan62 in reply to DorsetLady]

Hi there, so I went from 1.5mg. to 2, 5, 7 and 8 in the space of 2 weeks. It made a noticeable difference but didn’t clear it completely. I was still getting niggles at 8mg. The last 2 days I have come down to 6mg and I’m feeling more pain in my shoulders so I’m guessing I might need to go back up to 9 or 10 and stay there until the pain goes and then start a slower taper? I’ve made an appointment to see my GP but can’t get until week after next.

[PMRpro Ambassador in reply to Suzan62]

I'm honestly not convinced it is PMR flaring alone - you can have muscle spasms for other reasons and pred often doesn't make any difference to them.

[Suzan62 in reply to PMRpro]

I’m not sure what else it could be and it does feel like PMR pain. It’s not in one spot, it moves around and feels worse in the mornings. I think maybe if I’d increased to 10 for a few days like you said I might have got on top of the pain. I stuck at 7 for 7 days which was a mistake. The only other thing I can do is carry on at 6mg for a few days and see how I go. I don’t seem as bad when I’m busy, it’s the mornings that seem worse.

[PMRpro Ambassador in reply to Suzan62]

It NEVER works well creeping up the dose and you end up needing more in the end. What time do you take the pred? I'm sure you will have seen us talking about 2am being the ideal time to take it, the new inflammation doesn't get to take hold at all, It starts from about 4-4.30am so the sooner after that you take the pred the quicker it will work and the sooner you will be symptom-free.

[Suzan62 in reply to PMRpro]

Creeping up the dose is what I’ve done but 7mg was 5mg more than what I was on so as that’s the standard increase for a flare I thought it might do the trick. I’ve always taken them in the morning with breakfast so that my stomach isn’t empty. I’ll carry on with 6mg. I’m not in agony it’s just there. Sounds odd but it feels like the muscles are bubbling 😄

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Like PMRpro it does sound as if there is something else going on.

Have you tried ordinary painkillers or topical gel for shoulders to see if that helps.

[Suzan62 in reply to DorsetLady]

My gut is saying it was a flare that was coming on for some time but because it was only in my shoulders and I had no hip or leg pain like before I didn’t suspect PMR. I was using gel but it didn’t do much. It does feel like PMR but I can’t be certain obviously. The back pain has gone now it’s just in the neck and shoulders and worse in the mornings. I’ll continue the pattern 6, 4 and 3 for now and see how I go.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Okay - but obviously if it gets worse again then you’ll need to rethink things.

[PMRpro Ambassador in reply to Suzan62]

Have you changed your bedding/pillows recently? Or do they maybe need to be changed? Sleeping position can have a lot to do with how you are in the morning - me too, but I can't identify why one morning I can get out of bed without any pain and the next I can't!!!

[PMRpro Ambassador in reply to Suzan62]

It COULD be spasmed muscle - happens with PMR sometimes but pred doesn't always help. More targeted treaments often do though.

[Suzan62 in reply to PMRpro]

That’s interesting. It’s like a fluttering sensation in my shoulders and neck. I wouldn’t say it’s painful just uncomfortable. I probably will reduce in a day or 2 and see what happens.

[PMRpro Ambassador in reply to Suzan62]

I agree with DL ...

[Suzan62 in reply to PMRpro]

Hi there, just an update as you kindly replied to my earlier messages. I have seen doctor who listened to me ramble on about my aches etc. I’m none the wiser now though really. I’m on 5mg at the moment and it’s better than it was but not controlled completely. He said there’s the option to go up to 10 with a slow decrease. I mentioned going to 10 for 2 weeks and then a quicker decrease but he didn’t seem to agree or disagree with that. Basically it’s up to me if I stick where I am and hope it gets easier in time. I’m not in a great deal of pain after all, it’s just there. Some days worse than others. Or if I go to 10 for 2 weeks then come down in bigger stages ie 8, 6, 5 or 4. He seemed more concerned that I’m not taking Alendronic Acid to protect my bones but I’ve never wanted to because of the possible side effects. I came away none the wiser and thought maybe I should have requested a Dexa scan as it’s been a few years. Maybe I will request that and just see how the shoulders go for now and try the increase to 10 for 2 weeks if it gets much worse. He did the inflammation marker test and that came back 2 but as we know it’s more a case of how you feel.

[PMRpro Ambassador in reply to Suzan62]

Since he suggested a higher dose - why not try the flare protocol which should show if it is in need of a bit more pred which it does seem likely but get you back to where you are if it doesn't improve it more so the best of both worlds.

And yes - request a dexascan to see if AA makes sense. I always said I would take something if it was shown I needed it.

Any chance of a sports physio opinion about the shoulder muscles? I find them more switched on than the average NHS physio who is pressed for time and more focussed on post op rehab.

[Suzan62 in reply to PMRpro]

Yes that sounds like the best idea. So would that be 10, 8, 6 for 2 weeks each dose, then 5 and 2.5 measures after that?

I was having massages but they didn’t help, that was before I realised it was a flare and once I increased the steroids it helped a lot.

Some days it’s worse than others and definitely worse if I feel stressed about anything like today after seeing the doctor 😄

I’ll definitely request a Dexa scan and I agree about only taking something if it’s shown to be needed.

Thanks once again for your guidance.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

The flare protocol is included here [although was linked previously - if you want to try that again, but using 5mg as base figure... and returning to 6mg.

healthunlocked.com/pmrgcauk...

If you find that doesnt work [but it does for most] then try it your away. .. but once you get to below 5mg much slower tapering... 0.5mg or even 0.25mg a time. You aren't he first, nor I doubt will be that last to struggle with your illness and adrenals at such low doses.

[Suzan62 in reply to DorsetLady]

Thank you. Yes you did send it before sorry. I struggle to get my head around things sometimes unless they’re set out easy for me to understand. So if I stay on 10 for 2 weeks, then 8, 6 for 5-7 days, then slowly after that? Does that sound about right?

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

All you can do is give it a go -fingers crossed it does. 🌸

[PMRpro Ambassador in reply to Suzan62]

No - nothing like a long drawn out as that. And I see that while I've been faffing about looking for the link, DL has provided it! She is organised, unlike me!!!

That it is worse when stressed does suggest there is also an element of tension in the upper back and shoulders - they tighten up like a bit of elastic!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not in the least.. but we know where things are, when we know where things are!

[Suzan62 in reply to PMRpro]

Yes you’re probably right re tension! 😄

[Suzan62 in reply to PMRpro]

Doesn’t seem my doctors are aware of the flare protocol. I’ve requested some 5mg Prednisolone (I’m on 5mg at the moment but need to increase to 10mg I think) I crept up to 8mg before from 2mg then came down to 5mg even though it hadn’t cleared and so I think I need to go straight to 10mg this time. The doctors say to stay on 10mg for a month then 9mg for a month, 8mg for a month and so on. I wonder if they’ve even heard of the flare protocol. I’m going to try 10mg for 2 weeks anyway, then 8mg for a week, 6mg for a week (or maybe longer at 6mg if need be) then slowly down from 5mg. She was reeling off all the side effects and issues that can occur with steroids and said I need to have a plan with doctor re dosage etc. and maybe even an appointment with a rheumatologist as there’s steroid alternatives. Anyway I’ve been referred for a Dexa scan and have the 5mg tablets so I’ll try the flare protocol first. I’ve been on them for years so I think I’m aware of all the facts. I must admit the doctors make me feel worse instead of better! 😐

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Doesn’t seem my doctors are aware of the flare protocol.

Probably not, most guidelines just say - go back to previous dose…and as we know that’s not always enough. Fine if it is, but it depends on what your last dose was - and that can vary a lot whether you have GCA or PMR- and where you are in the progression of your illness.

Most of us [quite naturally] know our illnesses a lot better than the doctors. .. and even some of the enlightened ones recognise that fact!

[PMRpro Ambassador in reply to Suzan62]

There AREN'T steroid "alternatives" when it comes to PMR -they are add-ons and don't necessarily work to get you off pred entirely so you are adding anpther drug with pretty hefty adverse effects if you are unlucky.

The flare protocol is actually used by some rheumies but many know no better than going back to a higher dose and then starting the taper again means a considerable increase in cumulative pred dosage - exactly what they are lecturing you about! It only works when you overshot the dose you need - if it is a real relapse of the underlying autoimmune disorder it may not. But if going up 5mg works you do know you need something between and can aim the titration at that.

[Suzan62 in reply to PMRpro]

Yes indeed. Thank you both. I always feel a lot calmer after hearing from you. I’m surprised just how little doctors seem to know about the condition. It’s frustrating as they think they know best but that’s not always the case.

[Suzan62 in reply to PMRpro]

So I’ve been on 10mg now for a week. The original stiffness in the shoulder blades seems to have eased but I’m getting other weird twinges which I’m not sure is because the dosage isn’t quite enough to control the symptoms or if it’s a reaction to the steroids. Sometimes it feels like there are tiny pins being stuck in me. I’m just keeping busy and trying not to focus on it but it’s always there in the background.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

You might need longer on the 10mg to get things properly controlled -but tingling is a side effect of Pred -could it be that?

Give it a few more days and see what happens.

[Suzan62 in reply to DorsetLady]

Yes I’m going to stay on 10mg for another week. Yes it could be that, I did think it might be a reaction to the pred. I’ll persevere and hope for the best 🤞🏼

[PMRpro Ambassador in reply to Suzan62]

Or PMR - it can cause stabby irritation at times.

[Suzan62 in reply to PMRpro]

Bit of both I think to be honest. It feels like it did when I increased to 8mg the last time. I can tell it’s doing something but it’s not going away completely. My concern is that come Wednesday (2weeks from increase) that I’ll be in the same position and will have to start reducing again or stay put. Hoping things will improve in next few days but I’m not feeling too confident.

[Suzan62 in reply to Suzan62]

Hi again, just a quick update. I stayed on 10mg for 2 weeks and experienced various odd sensations which made me wonder how successful it would be but I came down to 8mg after 2 weeks and actually felt ok. Few twinges now and again and a bit fuzzy headed but better than expected. I’ve had 6 days on 8mg now so going to drop to 6mg from tomorrow and hope I continue to feel ok 🤞🏼

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Okay-hope it works … but if after a few days you feel worse then back to 8mg. Hope that’s not necessary.

[Suzan62 in reply to DorsetLady]

Hi again, I went down to 6mg and feel ok. It’s been 6 days tomorrow and wondering do I go down to 5mg or 4mg. I’d say the flare protocol is working. The pains have gone from my back and shoulder blades. Few twingy stabby feelings here and there, bones mainly, thinking it’s steroid related so keen to reduce but not sure how much.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

I’d give it another week on 6mg, and then try 4mg provided you feel confident.

[Suzan62 in reply to DorsetLady]

I was hoping to reduce today, maybe 5 if 4 is too big a drop and 4 next week if I’m ok? I could go back to 6 if I feel worse after a few days. I’ve done 2 weeks at 10, 6 days at 8 and 6 days at 6 so far.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Okay -give it a try and see how things go .. 👍

[Floridafan]

You sound exactly like me at the moment. I’ve been on 2mg for over a year now trying to reduce using every method I know but keep having to go back up to 2 mg.

This last time I decided to stick it out and continue reducing very slowly, hoping my muscle aches were due to my adrenals. Unfortunately, the pain in my shoulders, neck and back have just got worse and worse so I’ve upped my dose by an extra 5 mg and within 24 hours the pains are gone. I shall stay on 7mg for 5 days then try again in a few weeks. It is what it is…….so I’ll just keep trying and fingers crossed one day I’ll succeed hopefully 😀

[PMRpro Ambassador in reply to Floridafan]

Your body is telling you pretty clearly that you NEED 2mg at present because the PMR is still there at a lowish level that needs 2mg pred to manage. It is better to NOT force the taper because every time symptoms flare it can be harder to get it under control again. And you might well find it means you end up going the wrong way on dose and needing more. Even slightly too low a dose will result in the excess inflammation building up slowly over time and you could end up back at the very beginning where you were before pred.

[Suzan62 in reply to Floridafan]

Fingers crossed for you. I didn’t realise my pains were due to pmr as they were only in my shoulders and not in my legs and hips as they were before. Eventually after weeks of gradually getting worse I realised it was pmr. Going back to 2mg where I was ok for a while didn’t work. I tried 5mg for a couple of days but no joy. I’m on 7mg now for last 2 days but still got aching arms, neck and shoulders so I think I left it too late and might need to increase even more. Wishing you all the best 🤞