2.5mgs less every 3 weeks....pouf!

[Sillydogsmum]

Looks like I'm not going to be able to do this. Reduced to 16.25mgs two weeks ago, after 5 weeks after diagnosis on 20mgs and 3 week's on 17.5mgs. Reduced to 15mgs( 10/5) 10 days,ago. Yesterday started to be achy shoulders and thighs and worse today.So..........obviously need to go slower but is best to do so by 1mg more often or 2.5mg every 5 weeks or so. I am assuming this is disease activity rather than steroid withdrawal effect?? Grateful for any advice please. I'm off for a crp and esr tomorrow .

[piglette]

I had a rheumatologist who said I had to reduce 5mg amount at the beginning and it was a total disaster. I said goodbye to that rheumatologist!

[Sillydogsmum in reply to piglette]

I decided to follow guideline because of my glaucoma. Rheumato and GP are cool about what I do, so far at any rate.

[piglette in reply to Sillydogsmum]

It is good you get on with your doctors

[DorsetLady PMRGCAuk volunteer]

I'd be inclined to go back to previous dose [amended from 15mg - see below ] - get rid of symptoms - and then reduce 1mg a time - and same period... doing it more quickly is likely to give same issues..

just for info - SW v Flare - I'd say current is flare - about right timewise from reduction -

healthunlocked.com/pmrgcauk...

..and be interesting to see if blood test replicate symptoms

[Sillydogsmum in reply to DorsetLady]

Thanks DL but Do you mean 17.5mggs

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Sorry, [misread the 10 days and 10/5 as reducing to 10!] - so yes back to previous dose - i.e. 17.5mg...

2.5mg might be recognised taper at this level but not achievable for all...

[PMRpro Ambassador]

Not go slower - go back up and wait a bit longer.

It is all very well wanting to get off pred for whatever reason - but if you flare again you will be back at 20mg and it will probably be even harder to reduce. And that will mean MORE pred not less.

Given what has happened, I would do 1mg at a time from 17.5mg. 2.5mg at a time is a recognosed taper but it simply doesn't work for everyone.

[Sillydogsmum]

Thanks for all your advice, I don't feel so great and I can't be doing with being off colour at all at the moment. At least the weather is going to cool down soon so the higher dose isn't going to be such a nuisance as the last week or two.

[PMRpro Ambassador in reply to Sillydogsmum]

" I can't be doing with being off colour at all at the moment"

That sounds as if you are attempting to cope with far too much. It isn't a matter of taking a pill and everything is back to normal - you must do your bit too, resting and pacing to give your body a chance to heal.

[Sillydogsmum]

Thanks for your advice and concern. You are correct, I am used to using physical activity as my primary stress buster; it stops one thinking too much 🙄 . Life's slings and arrows don't vaporise to order sadly. My trusty Calm app, 🐕🛥️ etc all help but the timing of the PMR is a real b...m..r!

[marionofnorwich in reply to Sillydogsmum]

Probably not a coincidence!

[Ann1A]

Hi, I only have my own experience to go on, plus what I've read here, but as a fellow sufferer I'd say yes go back to dose that was effective , give the pred enough time to do its magic on the symptoms ( but remember the condition is still there underneath) then reduce more slowly to avoid flares and set backs. I hear what you're saying about glaucoma and stress busting etc, but the alternative is worse so ... cuddle the dog, do other enrichment and cross fingers you have the shorter (2yr ish) version of PMR .

[Kiwisufferer2019]

I'm struggling to reduce .5mg over 5 weeks, the experts on this forum will tell you your reduction is much too fast. I've learnt by my mistakes, if you don't taper really slowly you will end up yoyoing up and down, more up than down. Good luck.

[Sandradsn]

I can only go by my history..it took me 5.5 years to get from 15mg to 0 pred.Slowly does it.

[Sillydogsmum]

Profuse thanks to all above, but it looks like I have made a major boop.Refilling my 20mg tab bottle this morning I noticed it contained some slightly smaller white pills. So for the past week it looks like it was a bit of a lottery whether I have taken 10 mgs or 2.5mgs🥶😱in the morning. Evening dose OK at 5mgs. No small wonder I don't feel too good. Proposing to follow sick day rules if I can find where I have saved the link DL sent me above.

[PMRpro Ambassador in reply to Sillydogsmum]

I'd just use flare rules: add 5mg to your usual dose for a few days and then go back to where your should be, Can I ask a silly question: why are you transferring tablets from one bottle to another? Always keep medicines in the original dispensing packaging except to transfer to a dosette box for the next day or week. Reduces the risk of errors.

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Totally agree with PMRpro-don’t mess about swapping tablets around unless into a dosette box -recipe for disaster -and could be dangerous 😳

[Sillydogsmum]

Eureka, 20mgs a day........what a muppet!

[Sillydogsmum]

I am of to the chemist this pm for very same, will enquire if they do new brains at same time! Accidently put 5mg tabs from foil into the 20mg bottle thinking they were 20's, minimal size difference. 20 mg ones came in bottle originally.

[Hidden in reply to Sillydogsmum]

It's easily done!💐 hope you feel much better soon

x

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

New brains?

Likely to be a long queue!

[Grammy80 in reply to Sillydogsmum]

Ah! You are truly a certified member of the Forum! It is great to have such company.💞

[PMRinUSA]

Hang in there! I know it is hard to figure out the right pace to reduce, and there will be some steps back. But it the progress will come! I am currently VERY slowly tapering between 1/4mg and 0! Hoping my success continues, and sending you strength and patience.

[Sillydogsmum]

In the ferry queue for Blighty, feeling so much better than I have all week, so thanks again to all. Smart new dosette in luggage, spare Pills, second stash of spare Pills , just in case.

Dahlias in the dark !

[Hidden in reply to Sillydogsmum]

Safe and happy journey 😊

[Sillydogsmum]

Update....just as got off ferry late last night i thought was getting a migraine, no rooms at any inns so slept in the car overnight rather than drive to friends house. Wretched migraine didn't materialise! This morning she rings to say has Covid and so cant stay with her anyway.......every cloud etc etc ! Currently horizontal in a Travelodge gazing at the delicacy that is a small deli pork pie; just to protect my stomach you understand.I'm in the UK for my uncles funeral on Monday and before you all comment as to the inadvisabilty of my travel schedule given all above; I couldn't go to my mother's due to Covid so sort of feel I'm making my farewell by proxy.

[PMRpro Ambassador in reply to Sillydogsmum]

It is an ill wind as they say!!