Tapering advice

[40abba]

Tapering advice please. I was diagnosed with PMR aged 55 feb 2020. I’ve been taking pred starting at 15mg for 1 year... had to increase after reaching 1mg (Dec 20).. I’m now on 3mg daily.. would it be prudent to reduce to 2.5mg daily?? I’m desperate to get off pred. GP wanted me increase to 5mg initially (I refused) and has referred me back to rheumatologist. That was 3 weeks ago and I’ve not had a response yet but not surprised during a pandemic! Last blood test all normal with CRP = 8. Any advice gratefully received.

[DorsetLady PMRGCAuk volunteer]

Why are you desperate to get off Pred?

We’d all like to be off Pred, but you have to acknowledge that if your PMR is still active - which obviously yours is, or you probably wouldn’t have flared - then you do need some medication.

How are you at 3mg - truthfully? All symptoms gone or not?

Personally I would stick there a bit longer, and then maybe go down to 2,5mg rather than 2mg.

If you and your GP “expect” you to be off Pred in under a year....that is extremely optimistic.

[40abba in reply to DorsetLady]

I am also awaiting a spinal fusion operation and I’m not sure if some of my back/leg issues are that?? And truthfully I do have some symptoms/stiffness when getting out of bed in morning. Funnily enough the GP just phoned and the rheumatologist wants me at 2.5mg until all symptoms settled.. then reduce by 1mg every 2 months. So I guess I’m in it for the long haul 🙄... just really frustrating as I took early retirement from PE teaching and BAM 💥 this happened!! Thanks for replying

[DorsetLady PMRGCAuk volunteer in reply to 40abba]

Well the vibes worked on GP front!As you say spine could be causing some if it.....but the morning stiffness sounds suspiciously like PMR, so do monitor that...and check with GP if necessary.

If you have 1mg plain uncoated tablets that can be cut might be easier to reduce 1/2mg per month...same end result, but better on you and illness.

Good luck with op.....and very frustrating on the PMR front, but not usual unfortunately....previous stress probably the last straw!

[Koalajane]

Hi, you have tapered very fast. You don’t say if you still have PMR symptoms, do you?

[SheffieldJane]

The trouble is, if you race off Pred too soon, gradually all the symptoms will come back and you may have to start again. If 3 mgs is keeping you well it would be sensible to stay there. It is a dose that is negligible for side effects. Professor Dasgupta keeps his patients on this sort of dose as a treatment strategy to prevent flares. 5.6 years is the median period for PMR.

[PMRpro Ambassador]

How are your symptoms? They are what count. I realise you want to be off pred, but as you have found out already, PMR is in charge. Only 1 in 5 patients are able to get off pred in a year - PMR has a median duration of pred management of just under 6 years, that is the time for half to get off pred. It isn't unusual to find 1 or 2mg keeps it under wraps - but if you stop and the underlying autoimmune disorder is still active, you run the risk of being back where you started.

You shouldn't rush off the pred because of anticipated surgery - your adrenal function is compromised after a year of pred anyway. DL has said the rest.

[strawclutching in reply to PMRpro]

Sorry for the daft question but I'm still learning - If your adrenal function is compromised after a year of prednisolone, are its chances of kicking back in pretty remote, or is that just a matter of luck? And if we get lucky, do we have to be forever watching our stress levels in case it gets out of hand again?

[PMRpro Ambassador in reply to strawclutching]

It is only compromised because you have been taking more pred than the body needs so the set-up gets a bit rusty having not had to do anything much. Once you are down to about 6 or 7mg it should be starting to stir and do something again. If you go slowly enough it keeps up and you feel fairly good but you might feel extra tired. After a year on pred you shouldn't have too much trouble - the longer it is the harder it is for it to sort itself out and it may be harder for much older patients as adrenal function does fall away a bit with age too. I don't know if you can say it is luck - it is a physiological/biological thing that should adjust itself. But in the sense you don't know in advance I suppose you could say luck. No, I don't think it is a permanent thing once you are off pred - though you may have to watch out for up to a year until it is properly back in training and working reliably. Most people I know who got off pred, even after 4 to 6 years, have been fine however old they are.

No daft questions - if you ask it is because you don't know. Not everyone did training courses for work that discussed medical stuff

[strawclutching in reply to PMRpro]

Thanks so much! I'd like to clone your brain please.

[Grammy80]

All I can add to what has been said is I have come to accept that this autoimmune disease is the BOSS and I'm but a vessel. Today I will begin my fourth attempt at getting out of double digits. The doctors and I would like to get it down to 7-8 mg (plus TCZ weekly)...and I'm on board. I'm in no rush to get off pred and it has been almost 18 months. My hope is to keep the flares away.

Like many, I take meds for other chronic conditions, and if I have to take some pred to maintain...I'm good with that. I don't feel it is a choice for me with GCA. Hopefully, you will find a 'place' that is safe for you and maximizes your good days.💖

[HeronNS]

I think you have done brilliantly to have tapered as you did in one year. It's really good that your doctors have encouraged you to stay at your current low dose for a while and when you resume taper to proceed very slowly, although I think it should be left to you to tweak the method of taper, and maybe even stop for much longer at each level if you find symptoms starting again. It could well be that you will need 1 or 2 mg for a long time. I tapered to 3 in one year (starting June 2015), it took another year to get to 1.5 mg and to be honest most of the last five years I've been at or around 2 mg, with a minimum of side effects. It has been "nearly" as good as being off pred!

[thewalkingcyclist]

I was first diagnosed with PMR in 2010 at the age of 61 and it took me 3 years to get off Pred! my symptoms returned 3 1/2 years ago and I was put back on 15mg. Just over a year ago I'd got down to 1mg but symptoms began to return so I went back up to 5mg and felt good, I was able to carry on doing what I normally do, Cycling, playing badminton and going to the gym (until lockdown) I am now trying again to reduce the Pred so we will see how it goes.My GP did say that some people have to stay on Pred for life! but as long as it is 5mg or less it won't be a problem, and I might be one of those people! I must admit I feel quite normal on 5mg, I had a new hip at the end of Sept last year and was back cycling after my 6 week checkup, so if I have to stay on 5mg I won't be to unhappy.

[strawclutching in reply to thewalkingcyclist]

You've done really well to stay so active. At 5mgs, do you have to take acid blockers as well or are they not needed any more?

[thewalkingcyclist in reply to strawclutching]

I am still taking 70mg Alendronic acid once a week and Adcal tabs twice a day.I'm going to try reducing my prednisolone again next week, so we will see how it goes!

[strawclutching in reply to thewalkingcyclist]

Good luck!