tapering advice needed

[icecreamlover50]

Further to my previous post, after my recent flare I was put on 12.5 mg prednisolone for 3 weeks which end at the end of this week. I am now feeling much better apart from the usual side effects, brain fog, hair loss and breakage, weakened immune system etc. (I am at present trying to recover from a chest infection) and she has advised that I lower the pred by 0.5mg to 12.0mg for three weeks and then lower by 1.0 every 3 weeks.

I personally think that this is a bit too quick but I do want to come off the pred and don't want any more flares. I stated that this may be a bit too rapid but she was taking advice from her screen and did not seem very interested in my views.

Any opinions or advice would be useful.

[Mikeysaab]

I understand your concern totally. I have had a flare , first major one in 5 years. The first time I tapered very very slowly and thankfully have gone this long. My doctor is very supportive but nhs guidance is flawed. Reluctantly and with persuasion on my part he put me in 10mg for one week then straight down to 5mg and 0 after 4 weeks. I feel better already of course as magic pred does its job but obviously I share your concerns at how hard the brakes are applied. I do wish the wonderful tapering advice we have all benefitted from on this forum was adopted universally for PMR.

[PMRpro Ambassador in reply to Mikeysaab]

Is this a flare after being on zero pred for a long time?

[Mikeysaab in reply to PMRpro]

Pretty much . I’ve had minor flares but didn’t go back on pred. This was the first time I experienced the more intense symptoms of PMR since pre my first diagnosis.

[DorsetLady PMRGCAuk volunteer]

Looking at previous posts -I’d be inclined to stick with 0.5mg reductions from now on -and on a monthly basis rather than 3 weekly..

[PMRpro Ambassador]

" I do want to come off the pred and don't want any more flares"

Remember the PMR is in charge, not whether you want to get off pred - and at present that is a long way away. You do need to try to get to a lower dose - and slowly. The 1/2mg for 3 weeks is fairish - although I wouldn't try it until the chest infection is better. 1mg ever 3 weeks seems fair compared with most tapers at this level but given your problems, I'd aim for 1mg per month.

[icecreamlover50 in reply to PMRpro]

Thanks for the informative advice, I will stay on 12.5mg for another and then depending on state of chest infection, I will drop to 12.0mg for 4 weeks, then 11.5 for next 4 weeks.

The only problem is my lowest dose is 1,0mg and they do not have a line to make it easy to cut in half, I have tried using my cat's pill cutting gadget but it came out a bit crumbly! I believe that 0.5mg is difficult to get hold of and I don't think that the nurse who prescribed is going to be very pleased with my tapering plan!

Also, I'm having issues with exhaustion, absolutely shattered after completing a few lightweight household tasks! I know the answer will be rest but I find it difficult ignoring the mess especially now the days are getting brighter and longer and everything is showing up more and as for gardening, forget it! I would like it concreted over but may regret it at a later date when I feel better.

[PMRpro Ambassador in reply to icecreamlover50]

0.5mg tablets are megapricey too! Crumbly doesn;t really matter - it is being less than 1mg that matters.

Practice helps with a pill cutter and cutting a 5mg to get 2.5 and making up with 1mgs is an easier way of getting 1/2mg steps. As for the nurse - it isn't her body!

Break up your sets of tasks, identify what isn't important - dust is very patient, it will always wait! Ironing is mostly unnecessary! I have a cleaner for one hour a week to do the things I can't cope with - vacuuming and bed linen mostly. She vacuums and does one thing I can't each week. But pacing is essential - don't keep going to the end, rest before you have to.

Same with the garden - there are things that make it easier without turning it into a carpark! Look for some help.

[DorsetLady PMRGCAuk volunteer in reply to icecreamlover50]

Most of us have or are managing with cutting a 1mg in half..just takes practice.. and doesn't have to be exact...just approx... swings and roundabouts. and smallware than previous dose.