Real problems getting back on track with tapering

[Laineydee]

I’m 2 years into my PMR journey and recently got down to 5.5 mg pred using one of the slow tapering methods. About 6 weeks ago I had a significant flare and on GP advice combined with info from this site, I upped my dose to 10 mg for 10 days, then reduced back to 5.5. This didn’t work and within a few days I was in extreme pain. Blood tests were raised to ESR 40. I went back up to 10mg for 12 days, intending to drop to 1 mg above the flare dose, ie 6.5mg as recommended on this site. I was not confident dropping back after the earlier pain so decided to do it in stages. I have therefore been on 7.5 now for 8 days. I still have some discomfort, which only clears completely by evening. My question is - can I drop to 6.5 in the next couple of days or should I start the slow tapering process again. At the moment I have early morning hand pain and fluey-type aching in my buttocks - steroid withdrawal? My GP is expecting me to have dropped to 6.5 by now but I’m nervous about setting off another flare.

As always, many thanks for any advice from you helpful, understanding people.

[piglette]

From bitter experience if you are having any pain DON’T reduce, the PMR will come back and bite you. Personally I would take it slowly even though it is frustrating, it will pay off in the end though.

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to stay at 7.5mg - get things fully under control, before you even consider restarting your tapering regime.

It may be disappointing, but trying to rush things with what’s happened just recently is likely to keep you in the yo-yo situation. You need to stop that, and pronto … so take a deep breath and accept it is what it is… and you are only 2 years in.

You will get lower, but not just now.

[Laineydee in reply to DorsetLady]

Thank you. I’ll stick at 7.5 for a week or two longer. So disappointing when I thought I’d got things under control,

[DorsetLady PMRGCAuk volunteer in reply to Laineydee]

It is disappointing but these things happen -think it’s called life! 😊

[Laineydee in reply to DorsetLady]

And we all know life can be a b***h don’t we!

[PMRpro Ambassador in reply to Laineydee]

It has to happen though really - otherwise you don't know where you need to be

[PMRpro Ambassador]

There are two reasons for a flare of symptoms: one is overshooting the dose you need and the other is an increase in disease activity which results in more inflammation and requires an increase in dose. It may be you are experiencing the second.

Don't taper if you are in pain - and the symptoms you are describing are common in a flare. It is immaterial what dose the GP expects you to be at - go too low and you will be back where you started.

[papadapadoo in reply to PMRpro]

In the second case ("an increase in disease activity"), is it likely to be an increase that continues over time, or a single inflammatory storm? If the latter, could it be treated with a single major dose (50mg?) and the taper continued? When I had a flare of allergic contact dermatits a one-time jolt fixed it, but I know PMR is a different beast. I am just 4 months into PMR and have not had a flare as I tapered from 20 to 10mg. Not yet!

[PMRpro Ambassador in reply to papadapadoo]

Depends what it is. The most common cause of a flare is reducing your dose of pred to too low to manage the inflammation. If you reduce the dose too often or by too much it makes it difficult to know. If it is that, add 5mg to where you flared for a week to 10 days and drop straight back to the last dose where you were good, generally the dose before the last taper step.

It might be because you have an infection or are under a lot of stress - that might be short lived but if you are flaring it is rarely a one-day event whatever is causing it. And adding 5mg to the dose where you are flaring is often enough - absolutely no need to go OTT and add 50mg, that is overkill. PMR is a chronic disorder, not something you can hit over the head and kill it off and go back to a much lower dose. That 50mg would be far better applied as +5mg per day for a week or so,

[Laineydee]

Many thanks. Will stay at 7.5 for longer until pain subsides.

[alangg]

I would stay at 7.5 for at least 4 weeks - even if the pain subsides and you think that you are ready to reduce again. Then drop to 7 rather than 6.5 and do that with a very slow taper. Then stay there again for 4 weeks unless you need to go back up. A 1mg drop from 7.5mg is a 13.3% reduction and the advice gained from this forum suggests 10% maximum.

'Slowly, slowly, catchee monkey' as my very patient and thoughtful Dad used to say.

[Laineydee in reply to alangg]

Sounds like sound advice. Thank you. 😊

[Flivoless]

I'm at about the same stage as you over the same time period and whilst I do get some aches and pains but, luckily so far, not PMR pain. I do have stiff hands most mornings, but not every morning, and I find this simple exercise helps a lot. Start by bending just the tips of your fingers a few times then also bend the rest of your fingers into a fist. Do this routine as many times as you can and finish with also bending your wrists up and down. Do this routine whenever you think about during the day.

[Thelmarina in reply to Flivoless]

Thanks - I’m in the same boat! 👍

[Laineydee in reply to Flivoless]

Thanks for the tip. I’m already trying this now!

[seamaid]

Hi your letter is echoing me as well. I know it is so frustrating I guess we will both have to carry on plodding on 😇 Summer is coming which will always cheer us up ,so keep smiling .All very best wishes

[Laineydee in reply to seamaid]

Thanks for your good wishes. It helps to know one’s frustration is shared and understood.

[Pippah45]

It helped me to know that the average life of PMR is somewhere between 4 - 6 years. I had unpleasant flares in my rush to be off Pred but when I realised it's easier to go slower it has been a much better journey. I am coming up for my 3 year anniversary and am on 5.5 pred. I only manage .25 reductions now and am just about to go to 5.25.

[Laineydee in reply to Pippah45]

This makes so much sense. The “2 year “ expectation does put pressure on your tapering regime. Thank you for your wise words.

[Pippah45]

I am glad it resonated So many doctors seem to put the pressure on to reduce as quickly as they think which isn't very helpful. I was against steroids for years but to save my eyesight I had to change my view!