up, down, or stay on what level prednisolone

[456again]

the consultant I saw last month said take 10mgs a day for the next month, then 5mg a day for following 8 weeks. I was doing ok and even socialised away and partied for 3 days, then it came to change. The dose down last Monday and now I am in pain, neck, shoulders, hips. Can’t get thru to rheumatologist or doctors!

[DorsetLady PMRGCAuk volunteer]

No wonder you have issues……reducing from 10mg to 5mg in one step is bonkers…

When did you start Pred, and what was your starting dose…10mg or higher? I’m guessing 10mg, but maybe not.

Obviously 10mg put you in a good situation, but then reduction needs to be much smaller, a few can manage 7.5mg, but really it should be in 1mg steps…..and every 4-8 weeks depending on patient wishes and disease activity. That’s from national guidelines, so not sure where your consultant is getting his plan from!

Suggest you go back to 10mg until you can get an answer from either Rheumy Dept.or GP and a much more sensible taper regime going forward.

You might like to have a look through this for general info -

healthunlocked.com/pmrgcauk...

[456again in reply to DorsetLady]

Thanx, drs reception just called back, no appointments for 3 weeks, heard nothing back from rheumatology urgent help line! I will go back to 10mgs tomorrow morning, going away in the morning and doing the driving!

[Nextoneplease]

Hi 456again 😊

Oh dear! This reduction sounds far too fast, in fact it’s one of the fastest I’ve ever heard reported! I agree with DorsetLady - go back up to 10mg until you can get hold of rheumatology and review the situation.

All the best x

[456again in reply to Nextoneplease]

Thanx, drs reception just called back, no appointments for 3 weeks, heard nothing back from rheumatology urgent help line! I will go back to 10mgs tomorrow morning, going away in the morning and doing the driving!

[Seacat30]

I agree with the others but you do realise that you can't go back to normal life don't you? You have to rest a lot more. The 3 days partying may not have helped the situation. I hope you don't have to do a long drive tomorrow. If so, build in lots of breaks.

[456again in reply to Seacat30]

I must admit I thought I was back to normal life last week😮but realise now having gone back to sq1 this week that life is gonna be like a yo-yo , thanks for your reply, I am driving from Bexley to Sheffield Park, Sussex, not too far, but far enough for me to book overnight, can’t do out and back in one day anywhere.

[Nextoneplease]

Seacat makes a good point. Rest and pacing are essential to quality of life with this condition, and to eventual remission. Prednisolone helps to manage the pain, it does not cure the condition. You might be trying to do too much? Certainly far more than I could manage….

Look for details of pacing in FAQs if you haven’t already done this x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Pacing post is in my link….

[Nextoneplease in reply to DorsetLady]

Ah, of course it is, dear DorsetLady 👍😀x

[piglette]

My gosh, what on earth is your rheumatologist trying to do to you? You are on long term steroids. A fifty per cent reduction is going to cause you a lot of pain. I do wish some of these doctors would realise what they are doing to people through their ineptitude.

[Maisie1958]

I felt great on 10mg of prednisolone, not so good on 9mg and dreadful when dropped to 8mg after a month on each initially! Went back to 9mg then slow taper to 8.5mg and was fine 0.5mg drops doing DSNS taper for a long time. Rest time is important too. All good wishes

[456again]

👍

[PMRpro Ambassador]

Of course you are - whatever he is he isn't very good at PMR and tapering pred! What a crackers thing to tell anyone with PMR to do. ALL the recommended tapers say to go 1mg per month from 10mg. It is a totally different thing from using pred for flares in another condition until the DMARD medication is sorted - pred IS our DMARD and must be used as such.

Hope you have enough pred to go back to 10mg for as long as you need it.

Life need not be a yoyo, When you taper properly - i.e. the way we bang on about - you know when you get too low and can react quickly so you don't yoyo more than 1/2 to 1mgat any time.

[456again]

Thank you, yes, I have enough to go back up until I have a telephone appt with surgery,s. Pharmacist on wed pm! I am learning what it is like to go back into pain and what to do or not do!

[Smithie49]

No wonder we all get confused when almost everyone on here gas reported different pred regimes as recommended by their med teams!! I was down to 5mg when i saw my rheum. Was getting very stiff in neck and groin/hips. She put me up to 20 mg, 15 then 10 each for 10 days then reducing 1 mg per month unless symptoms recurred in which case I was to go back. I'm now struggling a bit on 6mg so might gave to go back to 7. Not keen as I'm a bit anxious about my bone density. - still waiting for a dexa scan.

[PMRpro Ambassador in reply to Smithie49]

See, we don't think that is needed - had she added 5mg to the dose for a week it would almost certainly have worked just as well and saved a load of pred. and you'd have been back at the dose above where you flares sooner. So many doctors over-react - though that is better than not reacting at all!!

[456again]

It seems I am part of a minefield since this diagnosis😱

[Pippah45]

This great group saved me from idiot medics who wanted me to reduce too fast stew years back. Probably 74 then. Slowly slowly is absolutely key. My sister has been yo yoing as she believes everything doctors tell her. This is for the long haul so don't rush it. Good luck.

[Ps99s]

Drop too fast ! Below 10 my Rheumatologists have advised drop 1 mg per month until down to 2 then try off. But it can be tricky even then. I followed and got off for nearly 10 months before a flare.

[PMRpro Ambassador in reply to Ps99s]

I'd have my doubts about any rheumy who suggested stopping from 2mg! Even 1mg can be enough to manage PMR inflammation.