Flare treatment

[Body_bonkers]

Have had a ‘good’ run from 30 to 7mg but been feeling rotten of late. It’s like my steroids, HRT snd Levothyroxine have all suddenly stopped working and my mood has plummeted. Suspect it might be adrenal glands but now have a PMR flare to deal with. I had a dose of cold couple of months ago and some extra stress. I stayed on 7mg an extra fortnight but perhaps should have left it longer.

At week 3 of tapering down to 6mg, I had nasty pain in the shoulders, neck and head which did not respond to paracetamol. It only lasted a few days so just assumed it was a steroid withdrawl reaction. Nocturnal pain in hips, mild fever and evening sholulder inflammation returned followed by swollen feet and by week 5, it became an effort to get out of bed etc.

I’ve therefore increased my dose to 7mg for the last ten days but it’s only partly worked and the stiffness is no better, I’m going to increase to 12mg for a week or two but not tried this method before. If it works, not sure what to do thereafter - is it back to 8mg for at least a month ?

[DorsetLady PMRGCAuk volunteer]

This contains usual advice for dealing with a flare - and yes back to 8mg - and reduce after that by only 0.5mg a time - that will help your adrenals as well. Also attached a link re them.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Body_bonkers in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

Best approach is to add 5mg to the dose at which you flared for up to 10-14 days. Then drop back to the last dose at which you were good - the flare protocol DL linked.

Just edging up the dose rarely works well - you have to springclean before you can go back to dusting daily!

[Body_bonkers in reply to PMRpro]

I’ve had a roller coaster start but this dose level is not one I want to mess about with - felt like I was dying. Thanks PMRPro

[Louisa1840 in reply to PMRpro]

Love this analogy Pro even though I don't really relate to housework examples ( I know you're not hot on it either!). This one really works and it's these lively little analogies that can become mantras for us on our PMR travels like the "dripping tap" one of yours.....

[PMRpro Ambassador in reply to Louisa1840]

Housework is fine as long as I don't have to do it ... I have neighbours who love doing it - must be mad!!!

[KASHMIRI1 in reply to PMRpro]

Its a waste of our one precious life. Especially when there the glories of nature just outside the door.

[Sophiestree in reply to PMRpro]

you have to springclean before you can go back to dusting daily!

great description!

[Twopies]

nothing to add except best wishes on your recovery; just wanted to say I love your user name; wish I had thought of it!

[Body_bonkers in reply to Twopies]

Thank you - name just sums up how I feel !

[Tealblue2]

hi - can I just ask please because I’m very new to this! The combination of steroids and thyroxine I have only learnt this week can massively affect each other - especially when taken at the same time. I wish someone would have told me this a year ago when I was first put on steroids. Do you have any further advice/ information please?

[PMRpro Ambassador in reply to Tealblue2]

If you want a reply from more than the author of the threa, DL and me, then you need to start a new thread so everyone sees it. Few other than those 3 will see it here in the middle of an existing thread.

There is some dispute of how much pred interferes with thyroid problems. In some patients pred will suppress TSH which doctors then misread as there being a lower requirement for thyroxine medication. But there are no listed interactions between pred and thyroxine - other than you shouldn't take ANYTHING at the same time as thyroxine to ensure optimum absorption. Taking thyroxine at night is a good option to reduce the clash of timing.

[KASHMIRI1 in reply to PMRpro]

Thanks for that info, I didnt realise that and take my thyroxine and blood pressure meds at the same time as soon as I wake up. Then wait an hour before taking stomach meds etc. etc. I have taken then this morning. I suppose I could go to taking thyroxine before bedtime about 9 o'clock

[DorsetLady PMRGCAuk volunteer in reply to Tealblue2]

As PMRpro has said, probably best to raise a new post.. there are quite a few on here who take both Pred and thyroxine so you get plenty of replies - and related posts to view.

[Body_bonkers in reply to Tealblue2]

Hi Tealblue2 - I had no guidance either but been taking thyroxine before and steroids after breckfast over the last year and don’t feel there has been an impact

[Bcol in reply to Tealblue2]

One possibility for this could be to take your Pred around 02:00ish which is the optimum time as it is then in your system before the nasties/inflammation come out to play at around 04:00-04:30 and then take your Thyroxine at breakfast, with nothing else, as usual.

[Tealblue2]

thank you 🙂