Trouble tapering from 5mg

[Sandyowl]

Hi.

I have tried twice to reduce down slowly. I dropped from 5mg daily to 2.5mg once a week with 5mg the remaining days. Wasn’t too much worse after about 3 weeks so 2 weeks ago I took the 2.5mg on 2 days of the week.

So for 2 weeks I’ve had stiffness/discomfort for most of the day, with a few hours in the afternoon feeling alright then stiffening up again by bedtime. I got so low and tearful that I’ve had to give in and will take 10 mg for a few days and then return to 5mg daily. I didn’t want to give in but couldn’t carry on. This is the second time in the last year I’ve tried reducing, so disappointing. My consultant has talked about adding in a steroid sparing drug but I am not keen to submit to regular blood tests and further side effects etc. I just want this flipping PMR to burn out. Feel a bit better now after my moan, so cheers 🙂

[Mary63]

I would try reducing by far less an amount. The perceived wisdom is no more than 10% of previous dose. You were doing a 50% reduction which I would suggest is doomed. Have you tried going from 5mg to 4.5mg? That is far more likely to work.

[Sandyowl in reply to Mary63]

I only have 5 and 2.5 mg tablets currently. Thanks I’ll ask about smaller dose tablets.

[Sandyowl in reply to Mary63]

With only 5mg and 2.5 mg tablets. Can’t do? They are enteric coated, can’t chop into two either.

[DorsetLady PMRGCAuk volunteer]

As suggested by Mary63 try reducing by a much smaller amount….and also maybe use a slower tapering method if you cannot get 1mg tablets….just one example attached, there are others -

healthunlocked.com/pmrgcauk...

As you have only had PMR for less than 2 years it’s no wonder you cannot reduce…both you and your doctor need to be a little more patient -

[Sandyowl in reply to DorsetLady]

Thanks for that. Think I need a chat about the speed of tapering and the possibility of a lower amount tablet.

[DorsetLady PMRGCAuk volunteer in reply to Sandyowl]

See you’re on enteric tablets, they come in 1mg as well - so with the 2.5mg size you can mixed and match to enable 0..5mg tapers …..can’t do 1.5mg or 0.5mg…but that low you could probably introduce the 1mg plain uncoated ones if necessary…without causing issues.

[Sandyowl in reply to DorsetLady]

Useful info. I will raise this at my next appointment.

[Koalajane]

I struggled to get from 4.5mg to 4mg so instead dropped by .25mg. It is not a race to zero

[Sandyowl in reply to Koalajane]

I know. They are so keen to reduce that it’s easy to forget yourself that current health and pain levels are more important!

[Koalajane in reply to Sandyowl]

I am lucky in that my doctor leaves it up to me

[scrambledegg]

Sorry to hear you are feeling so low. Many of us have been there so you are not alone.5mg to 2.5mg is a huge 50% reduction in one go. Even if it’s done as a DSNS taper it’s still a yo-yo of 50% one way and 100% the other every time you change the dose. I think anything under 10mg daily it is recommended that there should only be a maximum of 10% reduction/change daily. The experts will be along shortly but I would say you should try 1mg or even half mg each time. I’m on 10mg daily and can’t make it to 9mg after 3 attempts so am trying 9.5mg this time and 🤞it’s working so far.

Hope you feel better soon and please wait for the experts’ advice. This is just my personal opinion through experience and many hours of reading and learning through this wonderful site.

[Sandyowl in reply to scrambledegg]

Definitely a bonus to have a 1mg tablet. My consultant seems to think the 1 day a week 2.5mg and a gradual addition of a second day after a few weeks is slow. Apparently my body says. “No, it’s not!”

[Marijo1951]

A week ago I reduced from 5 mg per day to 4.5 mg and, so far, all is fine. I had been on 5 mg for about 8 weeks, previously I was on 5.5 for a similar period.

Like others here, I would recommend reducing at a much slower rate.

[Sandyowl in reply to Marijo1951]

Thanks for that

[PMRpro Ambassador]

You are not reducing relentlessly to zero - you are tapering the dose to find the lowest effective dose at any time -and since you have got a bit stuck at 5mg twice - that would appear to be the dose you need now. One particulalry good rheumy likes to keep his patients at 5mg for up to 9 months before trying to continue the downward trend and it seems to help. Another group keep patients at 10mg for a year before reducing further and finds that also reduces flares a lot. Prof Dasgupta even told us he keeps patients at2-3mg indefinitely to reduce the risk of relapses. All are similar approaches that reduce later flares - and they make sense when you realise that only a third of patients are off pred in 2 years. Half of us require a low dose of pred for more than 6 years. PMR is NOT a banal problem that is gone in 2 years as a lot of doctors would have us believe.

5mg is what is called a physiological dose - similar to the amount of cortisol that your body requires to function and which is made daily by the body in the form of cortisol. The associated adverse effects are low - found in a study to be similar in incidence to those found in an age-matched population who don't have PMR and aren't on pred. At this point and after 2 years there is no justification in adding in a so-called "steroid sparing drug" that may not work to reduce the pred more than a mg or two, suppresses your immune system even more (hardly advisable currently) and has its own layer of adverse effects. A third of patients who start methotrexate and a half who start leflunomide discontinue the because of adverse effects.

practicalpainmanagement.com...

the link to the original paper is at the end of the text.

Even if you can only get 5mg tablets it is possible to cut then to get just over 1mg bits - try that rather than 2.5mg at a time. But do try to get 1mg tablets - managing a 10% max reduction is hard below 5mg otherwise.

[Sandyowl in reply to PMRpro]

Really helpful advice and info. I’m really not keen to start on the steroid sparing drug on a 5mg regime.

[PMRpro Ambassador in reply to Sandyowl]

I certainly wouldn't be - not least because time is required just to get adrenal function back up and running and the methotrexate only influences that IF it keeps you at a lower dose for the PMR - and in my experience the problems with the MTX made doing without the pred harder!

[piglette]

Why are you trying to reduce from 5mg to 2.5mg in one go? You say that you were on 6.25mg on your write up. Why can't you just drop 0.5mg rather than 2.5mg at a time?

[Sandyowl in reply to piglette]

I was only gradually introducing one and after a few weeks then two days at 2.5mg with the hope of ever increasing with the lower dose, I have only been given 5mg and 2.5 mg tablets

[piglette in reply to Sandyowl]

Can you cut the tablets or are they coated? If they are coated can you get 1mg ones too, alternatively can you get 1mg uncoated? Otherwise I think you are going to have trouble reducing by 50%. I had trouble going from 15mg to 12.5mg!

[PMRpro Ambassador in reply to Sandyowl]

What sort of tablets have you got? Are you on coated or uncoated tablets or the ridiculous mix some doctors seem to think is fine?

[Sandyowl in reply to PMRpro]

Coated

[PMRpro Ambassador in reply to Sandyowl]

Then you really should get a bit demanding and ask for 1mg tablets - and before anyone tells you they don't exist, yes they do. There was a shortage last autumn but it is all sorted out again.