Advice for Flare

[Greensleeves]

Hi lovely people.

I’ve been steady at 4.5 mg for some time , but have felt the pain , stiffness and fatigue slowly creeping back since a very stressful Christmas and now this lockdown.

I just tried 2 days at 10mg to try and knock it out , i felt much better, but going back to the low dose this morning, I feel wretched .

Should I give in and go up for a while and slowly taper down again , or try a further longer boost of Prednisilone and go back down.

I’ve had this since 2012 , life is never going to be simple, and I accept the PMR obviously hasn’t gone , and my adrenal glands haven’t awoken.

All advice greatly appreciated.

[PMRpro Ambassador]

The old dose was obviously slightly too low - we always say go back to the level above first. And you will be surprised how much difference 1mg makes - even 1/2mg can be noticeable! And maybe 5-7 days at 10mg ....

[Greensleeves in reply to PMRpro]

Thank you PMRpro , I’ve learned the difference just 1/2mg can make ....I feel so poorly. .....I’ll try 10mg for a week and then perhaps 5.5 /6. ..... GP is desperate to get me off , he said 4.5mg is better , as it’s below 5mg . I’d prefer to stay on a low dose than add extra medications . Once again thank you... I try to cope with it, but feel desperate at the moment.

[PMRpro Ambassador in reply to Greensleeves]

It MIGHT be better - if it were still enough to manage the inflammation! I'd rather a bit more and feel human!

[Greensleeves in reply to PMRpro]

I agree , it’s like the most wonderful luxury to feel human and not be in pain . I prefer that feeling and more Prednisilone than this .

[PMRpro Ambassador in reply to Greensleeves]

I wonder how we can convey that to them - I have 3 doctors here who all agree that QOL is all ...

[Greensleeves in reply to PMRpro]

Quality of life.... every time

[DorsetLady PMRGCAuk volunteer]

Hi

I would try 10mg for 5 days - gives its s not longer to get inflammation under control.

You can then drop back -but not to 4.5mg as that’s obviously not enough. Might be worth try 6mg for a week, then down to 5mg - and stay there until you are really sure everything is under control before you consider your tapering regime again.

[Greensleeves in reply to DorsetLady]

Thank you ever so much , I’ll go up to 10mg in the morning..... I wasn’t sure how long you could increase and then drop back down. I’ve got the 2.5 gastro resistant Prednisilone and some 1mg so I’ll manage with those . I really appreciate your advice.

[SheffieldJane]

I think that you have honestly answered your own question. Stop letting the pain of that Christmas hurt you. Two years ago, I had a horror. I know that I need to let go.

I think some anger and hurt just keeps the inflammation going. 🌈

[Greensleeves in reply to SheffieldJane]

Hi Jane , it’s still ongoing, it’s very difficult sometimes.

I do hope you manage to let it go .

I absolutely agree the anger and hurt keeps the inflammation going.

I think that’s what started it in the first place. Take care and thank you ever so much. 🌈💖

[SheffieldJane]

Yes. I sensed that we had something similar to contend with. 🌺

[PMRnewbie2017]

Remember that the ec tablets will take longer to get into your system, perhaps as long as 5hrs to exert an effect. The plain tablets half that time. I have found my symptoms are better controlled with 2am dosing of plain tablets but if ec tablets are used I take them at bedtime.

[Greensleeves in reply to PMRnewbie2017]

Thank you, good point.