What to do when I need up my dose.

[Merrybell11]

Three times I’ve tried to go down ,succeeded once to go down to nil. After about five days got very I’ll again ,went up to five, spoke to specialist,he told me to godown slowly by one every two months,had got down to two, but got very painful flare again,went back up to four a few days ago ,slightly better, painkillers useless, can’t take codeine or ibuprofen,paracetamol doesn’t work. So tired of battling with pain,I live alone and need to look after the home. Finding more and more difficult,get painful after a few Iight tasks, I did overdo it a week ago am still paying for it I get very little sleep. I have to up my dose or else I can’t carry on.

Thank you for being there,

I

[PMRpro Ambassador]

In PMR you are NEVER reducing relentlessly to zero - you are titrating your dose to find the lowest effective dose for YOU and YOUR disease. That is the lowest dose that gives the same relief from symptoms as you achieved with your starting dose - it may not be 100% freedom from pain but it is bearable and doesn't increase over time.

You need to identify that dose - by going back to the dose where you know you were last free from pain and then tapering it VERY slowly, not more than 1/2mg per month to find the lowest dose that works. Once you have flared and inflammation has built up to a level it causes symptoms, you need a bit of a springclean first, a week or so at that dose plus 5mg before dropping straight back to that dose (no need to taper so slowly there). But you need to stay at any new dose long enough to know it is enough before trying the next step down. And the more you yoyo the dose as you have already done, the harder it becomes to control the symptoms and the more pred you may need to do so. It sounds as if maybe 3mg is your target for now, maybe a bit more. These are low doses where you can stop worrying as much - your rheumy has the idea, he just missed out the crucial point: stop while the going is good!

[Merrybell11 in reply to PMRpro]

Thank you to hear that, I’ve been on steroids for about seven years, what with all the trying to reduce,I know 5 mg is perfect as I can lead a normal life and without pain. Doctors are so keen to get you down they don’t think how much it makes you suffer. And make you feel you must do it. You have made me feel much better that I can do what I can to stop the pain. A big thank you.❤️

[PMRpro Ambassador in reply to Merrybell11]

Prof Sarah Mackie was saying just the other day that it is really important we dispose of the "PMR lasts 2 years" myth. In fact, in much of the rest of Europe they accept that PMR lasts a LOT longer than 2 years - and many patients manage to get to does in single figures but then are stuck there for much longer. A few of us, me included, get stuck at higher doses but we are unusual.

[Longtimer in reply to Merrybell11]

My Rheumatologist said to me recently, if I get down to 5 mg, I may need to stay there if that's where I feel ok....and it won't be a problem......I will try to lower when the time comes, but would stay at 5 mg of I feel better on that dose....QOL......

[Hidden in reply to Longtimer]

That’s what my rheumatologist said. I’m on 5mg. Will sit here for two months. Can try lower but probably will be there permanently. Definitely QOL.

[Sharitone]

Sorry that it's tough for you at the moment, and I hope you will soon find a dose that works for you. In the meantime, have you considered getting paid help with your housework? Bet wishes,❤️❤️

[Merrybell11 in reply to Sharitone]

Thank you for your speedy reply,indeed I wanted household help for ages, but impossible to find in my area, I can find a comfortable dose, but doctors are not happy with you upping the dose. I will see the doctor next week and see what help they can offer ,but I wouldn’t bank on it.❤️

[PMRpro Ambassador in reply to Merrybell11]

They may not LIKE upping the dose - but if they have reduced the dose too far, it is their fault and the only solution is to go back to the right dose.