How long after reverting to higher dose does it take for symptoms to ease

[Jontie]

As per title really. I'm 2.5 years into pmr. Like many people I get stuck at 5mg, even when using the dead slow method. My most obvious symptom below 5mg is pain in the SI joints. I've lost count of how many times I've tapered down to 3mg before having to go back to 5 and start again. My consultant has just advised me to go back to 5 and then reduce 0.5 mg every 2 months. That will be the slowest reduction yet. Maybe it will work this time! Anyway, I digress. I've been on 5 mg for 8 days now and my si pain hadn't eased. I've forgotten how long it takes for the increased dose to have an impact. Can anyone tell me please?

[DorsetLady PMRGCAuk volunteer]

Hi,

First comment - what a sensible consultant! And yes hopefully it will work this time.

As for how long it takes for the higher dose to kick - depends a bit on the individual - as always - but certainly within a week.

Are you sure the SIJ pain is PMR and not something in the joint itself which only surfaces when you get below the Pred level which masks it? Arthritis maybe - perhaps worth an X-ray or visit to physio to get checked.

[Jontie in reply to DorsetLady]

Thanks for the reply. That's a good point. If it doesn't go soon maybe I'll contact them and ask about that.

[SnazzyD]

Hello. Are you sure the pain is PMR and not one of the problems one gets with chronic weakened muscle and lax ligaments/tendons? Do you get relief when you go up and at what dose? How often have you done this?

By comparison since 5mg I’ve reduced 0.5mg every 6-8 weeks and aches and pains have been a large feature and I don’t have PMR. It is at this lower stage that my musculoskeletal system has gone wonky and I pay for any postural misuse or strain.

[PMRpro Ambassador]

Relatively sensible yes - but however slowly you reduce you won't get below the dose you are aiming for: the lowest dose that manages the symptoms as well as the starting dose did. I'd say your body is telling you that you have found it - 5mg under current conditions. It doesn't mean you won't get lower, just not yet, but experience shows that the more often you yoyo the dose the harder it will get to get lower. 5mg is a very low dose - why is he pushing it so hard?

I also have SI joint problems and find I have to take quite a lot of oral pred to keep the pain suppressed. Luckily the pain unit here takes other measures for those more specific things and that lets me manage the PMR on a lower oral dose.

[YuliK]

Hi there Jontie

I'm on 5mg too, really I'm in no hurry at all to reduce .. If i have the occasional pains, then I pop a couple of 500mg paracetamols and voila I'm as right as rain.

Don't be afraid to stay on 5mg, it's been proven there are no lasting side effects.

[piglette]

Have you tried another painkiller to see if that helps with the SI joints? You may find that they are nothing to do with the PMR.

[Jontie]

Thanks everyone. Must admit I hadn't considered that the si thing could be unrelated to pmr. Nor had the consultant for that matter as he said it was a "classic" pmr symptom. If you're right though, perhaps it was unnecessary to increase the dose. Maybe I'll try nurofen and 3.5mg and see how it goes.

[PMRpro Ambassador in reply to Jontie]

They can be a classic symptom in PMR - but actually even more so in a patient who has ankylosing spondylitis which is presenting in a polymyalgic guise. So both sides are possible - part of PMR or something separate.

[YuliK in reply to Jontie]

My rheumatologist recommended paracetamol....it really works for me, give it a try. Good luck. Let us know how you're getting on 👍

🤞