prednisolone withdrawal

[lennysmummy]

Hi I dropped from 7.5mg to 7 yesterday and by late afternoon tender area on scalp started. I know that it’s been said before that if this happens straight away it’s usually down to withdrawal and if it’s days later a flare. I can’t lay on that side, paracetamol hasn’t done anything and I’m awake at silly o clock. Should I stick it out for a few days or straight away admit defeat and take 7.5mg again this am? Had all bloods taken last Wednesday and again all come back normal. 😏🙏

[lennysmummy]

Anyone?

[DorsetLady PMRGCAuk volunteer]

usual advice in this link -

healthunlocked.com/pmrgcauk...

But if paracetamol hasn’t done anything and it doesn’t improve within the next few days then treat as flare as advised in link - and when you return to 7.5mg stay there…… for a couple of weeks.

[PMRpro Ambassador]

And bear in mind that your bloods were done at the higher dose!

Adding "anyone" as a reply won't speed up the reply from DL and me which you WILL get sooner or later! We read every post and reply so in the morning it does take us a while to clear the backlog from overnight!

[lennysmummy in reply to PMRpro]

I couldn’t see it added so wasn’t sure I had done it properly… it was 2am, that’s why I did it again! 🙈

[PMRpro Ambassador in reply to lennysmummy]

No problem - but you must have found it to add the question??? At 2am UK time there are only people in Canada and the USA around and there do seem to be fewer at present. Plus, not everyone feels able to answer that sort of question.

[lennysmummy in reply to PMRpro]

Unfortunately I’m not that computer savvy sometimes… I will refrain on asking anything in the future! Panic sets in sometimes and this forum is the only option for advice as it’s certainly not a&e. Thank you Dorset lady though. 🙏

[PMRpro Ambassador in reply to lennysmummy]

No - that isn't what I said. I meant you need to be a bit patient with us! Ask all you like but when you ask in the middle of the night, there simply isn't anyone around, we aren't ignoring you and you will get an answer.

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Please do continue to ask -but as PMRpro says it does take time for a reply -especially if you ask at certain times…

[lennysmummy in reply to DorsetLady]

Thank you. As I say it wasn’t the fact of being impatient, I thought there may have been a glitch and the question hadn’t gone through…I appreciate the responses that come through but really I don’t need to be chastised like I’m a child.. it’s a shame as it’s a great forum to be on. Thank you again though. 🙏

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

The system does have glitches, as those of us on here a lot know, and these last few weeks it seems to be more than usual...but you can always check your profile to see if your post has been accepted. Even it it has, the notifications to members aren't always spot on, and as the forum is used by members in many different countries, the time difference does have an influence...on when they are read and reply written.

[PMRpro Ambassador in reply to lennysmummy]

But we didn't know that - and all I did was explain why it took time to reply. We are all volunteers here and fit it in around life.

[oscarina]

havnt seen anyone getting chastised on this forum so from a retired psychologist's point of view it may be some hypersensitivity from the sense of urgency felt, even if not an emergency situation, some folks and myself included have at times greater vulnerability to perceiving catastrophe at hand when pain from flares , especially GCA, occurs. Any potentiality for losing ones vision is certainly alarming to say the least.

[Paulagcl in reply to oscarina]

I agree with this. The written word is tricky and easy to misunderstand -- no tone of voice to guide us. Even then, we can misinterpret. And when we are feeling vulnerable, at times all bets are off. We all mean the best for each other on this forum! I am six months into PMR and don't know what I'd done without the help I've received here. Most doctors don't have time for much any more except short visits. Their rate of unhappiness with how the system has gone here (USA) is super high and many are retiring early.