Not again

[Lovesport]

I do not post here very much- only once so far because I do feel I am getting sound advice from my rheumatologist . However I avidly read every day as I- like so many others- am trying to understand what on earth is happening in my body.

i dropped from 1.5 mgs to 1 on Monday and am suddenly back into intense pain. Shoulders back chest wall. To say I am disappointed is a massive understatement but I know it has been said here before .5 mgs can make a difference. It has just been so sudden and so complete. I am thinking I should go up to 2 mgs immediately. As PMRPro has said - there is no use in being on too low a dose as inflammation just builds up.

I would so welcome thoughts on way forward though. Is it enough to go up to 2mgs or should it be higher. And then what?

Thank you all really so so much as this forum has kept me from feeling so isolated through this.

[DorsetLady PMRGCAuk volunteer]

it might be enough… but you won’t know until you try. Maybe try for a few days -and if it doesn’t work then try the flare protocol -reducing back to 1.5mg or even 2mg

healthunlocked.com/pmrgcauk...

Once back on track would suggest a slower tapering plan -really beneficial at such low doses even if you haven’t needed one before. As you get lower each reduction gets potentially more difficult as it’s a bigger percentage of your previous dose.

Choice of slower plans here -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

How long had you been on 1.5mg? You might find going back to 2mg is plenty - but impossible to say. But the sooner you do it, the more likely it is to work.

[Lovesport in reply to PMRpro]

I had been at 1.5 for 2 weeks. But had been at 4, 3 and 2 for 4 weeks each time. I have taken 2 today. But also happy that I can go up to 7 and then straight back to 2 after 2 weeks. Can I take ibuprofen with my steroids or should it be parscetamol?

[PMRpro Ambassador in reply to Lovesport]

Paracetamol is preferable - both NSAIDs and pred can irritate the stomach.

That is a VERY speedy taper. Below 5mg we would say go 1/2mg at a time and preferably have longer between drops - like the difference between 1/2 and 1mg. the slower the taper the better your body comes to grips with the changes. At every 4 weeks, your poor body is just catching up with itself and you move the goal posts again!!

[Lovesport in reply to PMRpro]

One more question please. I’ve taken 2 mgs as recommended and pain is better for sure but not gone. Would you advise I went up to 7mg or try and stay at 2 a bit longer? I wish I didn’t feel so uncertain about how to proceed! May I thank you in advance for your help?

[DorsetLady PMRGCAuk volunteer in reply to Lovesport]

You could try 2mg for a couple more days to see if things improve-but as said previously if after a few days there isn’t a significant change then treat as a flare…

Sometimes you have to be bold to get back on track..and the increase is only for a short time.

[PMRpro Ambassador in reply to Lovesport]

As DL says - sometimes it is simply better to deal with it firmly by treating it as a flare - you might only need a few days and then back to 2mg and all sorted. It isn't a longterm increase.

[Lovesport in reply to PMRpro]

I will definitely do that. It does feel the right course. I don’t know how to thank you.

[somerby in reply to PMRpro]

Hi PMRpro, I am a long way from needing small doses yet but I am curious about the way you get 1.2mg for example. Do you use a pill cutter?

[PMRpro Ambassador in reply to somerby]

It was a typo!!!! Hit the full stop key instead of the forward slash key to write 1/2!!!

[somerby in reply to PMRpro]

Ah!, ok. But you still use a pill cutter for halves?

[DorsetLady PMRGCAuk volunteer in reply to somerby]

Yes - readily available from pharmacies or online…this is brand I used for years

Pillcutter

[somerby in reply to DorsetLady]

Thanks.

[PMRpro Ambassador in reply to somerby]

Personally? No, can't cut my tablets.

There was someone who got a precision scales to be able to get tiny changes in dose!

[somerby in reply to PMRpro]

Ok, thanks.