Anyone got advice please

[Maggie1313]

Hello Can someone help or advise me. I was Prescribed 15 mg of Pred a day on 25th November 2020 and it was like a wonder drug with in 3 days I felt great and could move so freely. On 18th December 2020 26days later my Dr reduced the dose from 15mg to 12.5mg and within 5 days I was in a full flare up . My Dr then told me to go back up to 15mg which did no good and then said to go up to 17.5mgs which has only helped a little, I am wondering if I took 20mg for a time would it help and then reduce really slowly over a longer time. Please can anyone help 🙏

[PMRpro Ambassador]

Probably - that's what almost all of us would advise you try. If you have a flare like that because of reducing the dose too far/too soon/ in too big steps. it can be a problem getting things under control again.

However - I do have to ask: did you also rest and avoid normal activity for a while? Feeling great with pred is a false friend, the illness is still there and working away in the background, attacking your muscles and making them intolerant of too much activity. Then there was the excitement of xmas even if it was less than usual. You are ill - give your body a chance and REST!

And a warning: PMR symptoms can be the first sign of GCA developing and sometimes if that is happening it may mean that the original starting dose is no longer enough to manage the inflammation. Do you have any extra symptoms or is it just worsening PMR?

[Maggie1313 in reply to PMRpro]

Thank you for you reply. You are right I did not rest up as was so excited when the pain had subsided , and yes was under a lot of stress at Xmas all caused by myself. Do you think it might help if i was to up to 20mg and see if it brings me back to when I was first on 15mg and got relief and then I would know to taper the dose more slower next time 🙏

[PMRpro Ambassador in reply to Maggie1313]

I think it would be a good start - but do speak to the GP first, admitting what happened too! You may need longer on the starting dose to get all the existing inflammation cleared out - if you don't then you are at a higher baseline, only a small bit of extra inflammation can be enough to leave you in pain again. And bear in mind, mornings are likely to be worse until the pred kicks in, that isn't entirely a flare unless it is getting worse, it can often be dealt with by more judicious timing of the dose.

[Maggie1313 in reply to PMRpro]

Mornings are bad but when up and get pills pain eases up some. Would have a lot of anxiety and panic since on the tablets Will be talking to Dr on Tuesday and ask about going up to 20mg Thank you so much for taking the time to reply sad as it is to say it’s good to know I’m not alone with this terrible thing 🙏

[PMRpro Ambassador in reply to Maggie1313]

We used to suggest setting the alarm for a couple of hours before you intend to get up, take the tablets and settle down for another couple of hours so that by the time you get up they are starting to work.

[Maggie1313 in reply to PMRpro]

Will give that a try 🤔😊

[HeronNS in reply to Maggie1313]

Remember to eat something when you do. People often keep a little pot of yoghurt ready, or a banana, or something like that to line the stomach.

[Maggie1313 in reply to HeronNS]

Thank you will do 👍

[DorsetLady PMRGCAuk volunteer]

Hi nd welcome,

PMRpro has covered all I would, so won’t repeat ...however you might like to read through this before speaking to doctor - might make things a bit clearer for you.,,

healthunlocked.com/pmrgcauk...

[Maggie1313 in reply to DorsetLady]

Thank you so much 😊