Very low dose steroids pain returning

[alysonkerry-]

After 11 months and gradually reducing prednisone from 30 mg a day to 2mg as well as now taking methotrexate and symptoms of PMR all but disappeared I am now getting pain back in my wrist/thumb and shoulders is this common and is it directly related to steroid reduction would appreciate people’s thoughts Thankyou

[DorsetLady PMRGCAuk volunteer]

Most definitely I would say, and particularly as less than a year on medication. Your illness us still very active - and the MTX is not taking over from the steroids - it’s just helping you reduce more quickly. A tad too quickly it would appear!

You probably need to increase a little - can you recall last dose you were on when there were no symptoms? If so, go back to that, get stable, and then reduce more slowly.

Getting from 30 to 2mg in 11 months is not gradual.

[alysonkerry- in reply to DorsetLady]

Thankyou so much for your advice. My reduction has been instructed by my consultant and I really didn’t understand that MTX was prescribed to allow me to reduce steroids quicker.

The last dose I had no symptoms with was 4mg a day if I renewer correctly.

Thanks again for your help

[DorsetLady PMRGCAuk volunteer in reply to alysonkerry-]

Yes I assumed it was Rheumy’s plan. .., and I know why they add in MTX. But if your illness is still active - which it’s likely to be at under a year you still need the Pred (a some level) - so I do wonder why they rush patients.

Try going back to 4mg and see if things improve.

[alysonkerry- in reply to DorsetLady]

Will do thanks so much

[Arflane97G]

My rheumatologist told me to be very careful at low doses of Pred as symptoms of Pred withdrawal can mimic those of a flare and the only way to know for sure is to have a blood test.

[alysonkerry- in reply to Arflane97G]

Thankyou for your reply I wasn’t aware of that fact

[tangocharlie in reply to Arflane97G]

How would a blood test show the difference? Which blood test?

[alysonkerry- in reply to tangocharlie]

I assume Arflane 97G was referring to a blood test to check your inflammatory markers ?

[Arflane97G in reply to alysonkerry-]

Yup

[tangocharlie in reply to alysonkerry-]

But that would only work if you could see a change in inflammation levels before and after the reduction and it's not that accurate to be able to conclude anything. Many people say that if it's withdrawal pains it should go away by taking paracetemol or similar pain killer, but it wouldn't if it was a flare.

[PMRpro Ambassador in reply to tangocharlie]

Or withdrawal pain improves over the following couple of weeks - while a flare gets worse.

[alysonkerry- in reply to PMRpro]

Pain is eased with paracetamol so maybe it is just withdrawal pain ? Thanks again everyone for your replies & support

[PMRpro Ambassador in reply to alysonkerry-]

That or something else that was improved by the pred - like osteoarthritis where pred can make a difference.

[Rokerman]

That does sound like a rapid taper - it’s taken me over 4yrs to get to 0.5mg/day (albeit with no flares), having followed the ‘dead slow, nearly stop’ tapering plan. Over the last 3-4mths, I have been experiencing some pain in the hands - it usually gets better after a couple of hours after waking.

[alysonkerry- in reply to Rokerman]

Thankyou I have a telephone appointment with my rheumatologist next week so will discuss what all you lovely people have said on here thanks again

[tangocharlie in reply to Rokerman]

I had the same, very stiff hands on waking, my doc says it wasn't related to PMR but I think it was

[Rokerman in reply to tangocharlie]

It’s not just me then?! Thing is - I’m 4yrs older than when this all started... you’re just not sure what to think now - but I tend to agree with you!

[tangocharlie in reply to Rokerman]

Well they sent me for all sorts of other tests like Carpel tunnel and it wasn't that. My totally unproven theory is it was inflammation in the shoulders impinging on nerves etc

[PMRpro Ambassador in reply to tangocharlie]

They have a fixation that PMR doesn't affect feet and hands. It does - I mentioned it to Sarah and they were doing a study. Ask her. But if the patient has RS3PE syndrome it goes for hands and feet and is recognised now as part of PMR.

[tangocharlie in reply to PMRpro]

I had terrible feet problems - it was treated as plantar fasciitis with steroid injections but maybe it was 'just' PMR. I still get swollen feet. You've taught SM a lot - I like to think I have done a little bit too with my perseverance to get diagnosed and treated for PMR against a system that was convinced I was too young to have PMR.

[PMRpro Ambassador]

You have gone to too low a dose of pred - mtx doesn't replace pred, it may get you to a lower dose of pred than without it but it rarely works for PMR on its own. You are never reducing relentlessly to zero - whatever any doctor tries to tell you. You are looking for the lowest dose that manages the symptoms as well as the starting dose did. You have gone past it. You will probably get lower - just not yet.

[alysonkerry- in reply to PMRpro]

Thankyou much appreciated will speak to rheumatologist