Tapering too quickly

[Bonsaigirl]

Diagnosed with PMR in December 2021, started on 30mg, now I have been tapering 1mg every two weeks from 10mg as instructed so did two weeks at 9mg and when I reached 8 after the two weeks I developed real pain in my neck and shoulder. As my PMR has only affected my legs this is new to me.

I spoke to the PMR group and they said that I had tapered much too quickly and this was a flare up. They recommended I go back to 10 for a month and then reduce 1 day at 9mg then 5 days at 10, then I day at 9 and then 4 days `at 10 and so on when down to 1 day at 9 and 1 day at 10 start at 2 days at 9 and 1 day at 10 and so on. They also said that only reduce by 10% in any one month as the lower you taper the higher the % will become. Today is my first day back on 10mg, so I am hoping the pain will improve quite quickly. Unfortunately paracetamol only takes the edge off so not really very effective in pain relief. I feel annoyed that I have had a flare up especially in a different place from my from my legs, I am wondering if this is normal. Can't get hold of my rheumatologist at the present time, the hospital is always on answer machine! I have been reading the posts on tapering and it would seem that the flare ups only happen when people are on a low dose 3-4mg. Well I will persevere and see what happens.

Maggie

[DorsetLady PMRGCAuk volunteer]

I have been reading the posts on tapering and it would seem that the flare ups only happen when people are on a low dose 3-4mg.

A flare can, and does, happen at any dose - it just means you have gone below the dose your illness actually needs on a daily basis... but it is probably more likely to happen on lower doses when the margin between plenty of pred, just enough pred and not enough pred is much finer..

This link gives usual advice on dealing with a flare -

healthunlocked.com/pmrgcauk...

..and have to say, I doubt that an increase of 2mg will sort it out [it may if you are lucky] - usual advice is add 5mg above dose you were last okay - in your case that could be 8mg, 9mg or even 10mg...difficult to tell as reduced so quickly.

As for tapering below 10mg - guidelines say -

1mg every 4-8 weeks - depending on disease activity and patients wishes... 1mg every 2 weeks is asking for trouble...

[Bonsaigirl in reply to DorsetLady]

Thank you so much for your help I realise now that I have been focussing on getting to zero and not listening to my body.

[DorsetLady PMRGCAuk volunteer in reply to Bonsaigirl]

The problem for many, is their doctors also are focussed on getting to zero -and that doesn’t help the patient.

No one wants to be on Pred longer than necessary, but you do need to be on enough to control your illness. It never fails to amaze me why some doctors don’t realise that -I guess they don’t really understand the illness enough

So yes, listen to your body -don’t necessarily go by the the date on the calendar, .. and good luck.

[Bonsaigirl in reply to DorsetLady]

Thanks. I have been looking at my diary notes and realise that My tapering has been quite erratic since first dose of 30mg in December 2021. Went down to 25 after one week and then 20 fir one week. After that was reduced and put back twice as blood tests showed an increase in inflamation. I never felt that good any of the time really but thought I should do what doctor advised. Which was to reduce by 1 mg every two weeks. Haven’t been in contact with her for over six months as I thought even though I was not feeling I was progressing I should stick with her plan.

But now I am taking your advice and tips from other people and have gone back to 15 mg to see how that goes.

[DorsetLady PMRGCAuk volunteer in reply to Bonsaigirl]

Even at higher dose you really need to be at each one for at least 2weeks -that how long it can take to know if that dose is okay before you reduce.

3-4 weeks is better -even longer at lower doses. 😊

Best of luck ..

[piglette]

Painkillers really are a bit of a waste of time with PMR. It is steroids you need. It may be a good idea to up by 5mg fir a week to knock the PMR on the head you can then drop back in say to goes quite quickly you do not need to taper if you drop with a fortnight. I would only drop every four weeks in the future, particularly under 10mg. Personally I would just reduce by 0.5mg a month but some people are more resilient than I am!

[Charlie1boy in reply to piglette]

Hi Piglette,

i wasn’t more resilient than you, and I am male!,

My advice would definitely be to reduce, when below 10mg, by a half mg - probably every four weeks, but only on condition that the symptoms feel ok. Sometimes I stayed at a dose for much longer than four weeks.

Your advice is sound in my opinion.

Paddy

[piglette in reply to Charlie1boy]

I am a tender little flower when it comes to reducing!

[Charlie1boy in reply to piglette]

That I don’t believe! Your posts are filled with common sense, with a recognition that we are all very different in how pmr manifests itself.

Paddy

[piglette in reply to Charlie1boy]

Common Sense. That is a term that seems to have disappeared from day to day life!

[Bcol in reply to piglette]

I must be a very tender flower, I work on 0.5mg every five weeks and even then only start the next taper if all feels good.

[piglette in reply to Bcol]

Being a tender flower is good in my opinion! 🌺🌸🌼

[Mayadill]

I have been reading the posts on tapering and it would seem that the flare ups only happen when people are on a low dose 3-4mg.

As DorsetLady has said, no: I flared at 10 mg (straightforward having gone too low) and also at 13 mg (mixed up with Moderna jab, not sure what went on there, but am sure the flare was pure PMR, went up to 18 mg to hack it)

[DorsetLady PMRGCAuk volunteer in reply to Mayadill]

Bonsaigirl

..and people with GCA flare much higher....20s, 30s, 40s...

[PMRpro Ambassador]

" it would seem that the flare ups only happen when people are on a low dose 3-4mg"

I really don't know what you've been reading - plenty on here who have had flares at all sorts of doses! And some have flared when told to reduce from the starting dose.

From 10mg ALL the guidelines say to taper 1mg per MONTH, not every 2 weeks. If you reduced after 2 weeks you hadn't been on a dose long enough to know it was still enough. Tapering at more than 1mg per month is predictive of flare. Many people find even 1mg per month hard going.

[LemonZest11]

As others have said, low dose flares are one thing but I have flared at 7 and 10mgs. First was at 4 but the others were higher. Here's a tip, taper by .5mg from 10 - 3, then go by .25mg. It takes a while but you're not in a hurry. And to be really cautious, do it in 6 weekly drops. 🤞

[Greensleeves]

It is extremely frustrating, I feel you’ve tapered too quickly and the inflammation in your body is protesting. An increase will help and a much slower tapering regime.

I’ve been getting by on 8mg , just about, but a long day of overseas travel yesterday , culminating with a recent extremely emotional time , has resulted in me taking another 5mg this morning plus the need for a nap . Believe me Bonsai , even if you drop 0.5mg per week, it’s progress .

Hope your pain eases soon. New painful areas do appear .

I’m so fed up with myself but we have to keep going. Sending hugs 🤗

[Gossiplady in reply to Greensleeves]

hi Greensleeves! Please do not be fed up with yourself! Slow but sure will get us all at the winning post. We must listen to our own bodies and not calendar dates or quite a few doctors. When I look back and on two occasions I rang my daughter to say I just could not carry on with this mess, but sensible thinking and remembering how much I had improved since the initial weeks of agony, put hope in my heart. We will get there! Keep strong!

[Greensleeves in reply to Gossiplady]

Thank you so very much for your kindness and thoughtful words Gossiplady.

You speak such sense, it’s a panic sometimes when you wonder how long is this going to be , one step forward and 2 back.

The answer is we will get there in the end , to listen to our poor bodies , not pushing to the extreme , and take the extra Pred if necessary. We can’t run on empty. Take care and big hugs xx

[Colleen1974]

Bonsai - yes I flared at 10 and took me a couple of months to taper again. I now am at 7.5 and only taper .5 mg every 6 weeks. But I was just saying to my husband I have morning stiffness in my hands and behind my knees that I never had before. This stuff definitely moves around. Every day is a surprise!

[DorsetLady PMRGCAuk volunteer in reply to Colleen1974]

Maybe hang fire at 7.5mg for longer than usual and see if it recedes…, you might just be on the cusp of “enough Pred/not quite enough”. You don’t want to fall into the “definitely not enough”!