Lead time for steroids to work

[MOG62]

Hi, joined this group last week. Had PMR when 50,12 years ago, treated with steroids, went away. 4 months ago it reoccurred but slightly different symptoms, now back on steroids . I do suffer from osteoarthritis of the spine which clouds things. I have a couple of questions I need help with ,

1. my gp put me on 15 mg of pred less than 2 weeks ago, but didn’t seem to to improve much, upped to 20 and whilst better still getting symptoms (worse v early morning). I’ve read usually it takes 2-4 weeks before noticeable impact, is that true or should I speak with gp again?

2. With my last occurrence, I was symptomless after 6 months, I’m guessing it varies withage?.

Many thanks for your help.

[DorsetLady PMRGCAuk volunteer]

No necessarily with age -more on a personal level and also how the PMR affects you.. we aren’t all the same.

You should expect a decent response within 4 weeks (at least a 70% improvement-if not then you probably do need to speak to GP to make sure it is PMR..

Most people say second or subsequent bouts can be different from first -and if it’s resurfaced after 4 months maybe it never went away… but would have expected a better response.

[MOG62 in reply to DorsetLady]

Thank you , sorry if I confused, it 1st occurred 12 years ago and came back 4 months ago. I’ll wait another couple of weeks…

[DorsetLady PMRGCAuk volunteer in reply to MOG62]

Sorry I misread that- how long did you have it last time? Maybe give Pred a bit more time to work.

[MOG62 in reply to DorsetLady]

It was about 6 months but as it was 12 years ago, I can’t remember how quickly it improved, If I give it another couple of weeks then have a blood test the ESR count should fall from 97 , fingers crossed.

[PMRpro Ambassador]

Hi and welcome!

You may be someone who now needs 25 to get a dramatic result - every episode of PMR is said by the unfortunates who have had it more than once to be totally different in every way! Some people get relief in hours - like me, less than 6 hours to be able to walk down and back up stairs that I'd stomped down like a toddler and crawled up on hands and knees in the morning. That was 15mg but it was a few months before all pain had gone.

But it doesn't often work that fast, mostly it is a week or so, some need more, but the higher doses work faster - obviously. Lower doses and faster are probably related to size/muscle bulk. There are a few on the forum who had similar experiences - a couple needed 30mg to get a significant change. If you need a lot and then struggle to taper the sode, it MAY suggest it is not PMR but an atypcal presentation of something else.

Were you off pred in 6 months first time round? That is VERY fast for PMR, about 1 in 5 patients take 1-2 years so really a minority. I don't think it is age-related and a very short episode is thought by some experts to suggest not PMR but a polymyalgic presentation of something else. You say the symptoms are a bit different - in what way?

[MOG62 in reply to PMRpro]

Hi, thanks for your response. My first episode was 12 years ago so it’s difficult to remember the symptoms and recovery. It was diagnosed by a consultant rheumatologist at the time and looking back at his letter to my gp i started on pred 20mg, next month was 17.5, the third month 15, then reduce by 1mg each month thereafter so maybe it was 12-18 months not 6.

The symptoms are slightly different same random aches in the shoulders torso & thighs but I’m last time I couldn’t raise my arms above my head . The situation is complicated by the fact that I have osteoarthritis of the spine/hips which occasionally leads to sciatica. My daughter is a qualified physiotherapist and give me stretches which along with painkillers help temporarily but it is most disruptive at night - leading to broken sleep etc. 2 weeks ago I remembered my previous bout and contacted my GP, blood test showed ESR raised at 97 (in 2012 it was 84). They started me on 15 mg on Xmas day but 5 days later I had the worst episode and couldn’t walk. I contacted them again and moved to 20mg daily and that’s been a week now and I can’t say the pain has lessened much but it is so random it’s really hard to evaluate (sometimes better sometimes not) . They did say the dosage is trial and error and I can contact them again to up it (but I didn’t know how much time I should allow for each dosage?). One thing I’m trying to do is some light fitness training, just stretching & 30-40 walk and I’m wondering if that’s not helping at the moment. I’m also going to the far east in < 4 weeks and would really like to in less discomfort then. Apologies for the long reply and any further advice you can offer would be greatly appreciated. Thanks

[PMRpro Ambassador in reply to MOG62]

Yes, I definitely think a bit less stretching and the walking is a good idea for the moment. I think you DO need another 5mg if you haven't noticed a difference yet. At least they are receptive to that - many are not.

Keeping moving is good, but too much exercise of any sort can make the muscle aches worse - the pred cures nothing but combats the inflammation created by an underlying autoimmune process that is attacking soft tissues and creating inflammation. The stretching is probably pulling on the attachments of muscles and tendons/ligaments where the inflamamtion is seated - remember your mother telling you it would never get better if you picked at it??? It's like having flu that goes on and on.

I think you probably need to be a bit more proactive - you have a deadline and you need to be mobile by then. And a sore point - if this started after you took out insurance for the trip it will be covered but have you declared EVERYTHING that might be relevant?

[MOG62 in reply to PMRpro]

Thanks again, yes I’ll stop the exercise for now and contact the gp tomorrow to increase to 25mg. Insurance I took out in August but don’t want to declare just yet until it comes under control, hopefully it’ll just be a premium increase rather than cover cancellation.

Will keep you updated.

[PMRpro Ambassador in reply to MOG62]

If there was no sign of the whatever it is in August - there should be NO excess premium to pay. Just be sure you told them everything pre-August.

Don't apologise for a long reply - far better than us having to winkle it out of you with a load of questions!!

[MOG62 in reply to PMRpro]

One additional question, is it normal to still have to take painkillers (cocodamol, paracetamol, naproxen) whilst on pred ?

[PMRpro Ambassador in reply to MOG62]

No. Painkillers are pretty useless in PMR and if your pain responds to painkillers then that does cast some doubt as to whether it really is PMR. Pred acts as your painkiller by combatting the inflammation which underlies the symptoms. If the dose of pred is not high enough to do that fully, the inflammation will build up again and the symptoms return. However - painkillers may help for pain due to steroid withdrawal as you change the dose or due to osteoarthritis or DOMS (delayed onset muscle soreness). But you shouldn't need them for PMR pain.

[MOG62 in reply to PMRpro]

Do you have to take the pred in one go in the morning ?. Just wondering if I split the daily dose morning & evening would it ease the symptoms at 4-6am ?

[PMRpro Ambassador in reply to MOG62]

No, that is the recommended time because it is supposed to mimic release of the natural cortisol but in PMR that is immaterial, cortisol will be suppressed after a couple of months anyway. Doesn't have to be morning and evening - you can take abut 2/3 of the dose with breakfast and the rest sufficiently later to extend the antiinflammatory effect to the morning. It not lasting the full 24 hours is not uncommon - so splitting like that often works without that later dose affecting sleep too much.

[MOG62 in reply to PMRpro]

I suffer from osteoarthritis and previously it was controlled but I’ve had 2 temporary bouts of sciatica.,, just wondering if pmr can trigger this ? Thanks

[PMRpro Ambassador in reply to MOG62]

Sciatica can be caused by a variety of things including tight muscles. Piriformis syndrome is often seen alongside PMR and although I don't have sciatica, I do have myofascial pain syndrome (MPS) and that can also involve piriformis syndrome - and PMR makes the MPS worse.