flare

[Mumdadlove]

Hi All

I know that stress or a shock can trigger a flare, I am away in Spain at the moment completely chilled, last Friday I reduced from 15mg pred to 13 and a half, felt fine, out yesterday and had a lovely day, late afternoon had a bit of a shock that sent me into complete worry mode, I went to bed and surprisingly slept but during the night had back of scull/neck pain slight temple and forehead, headache quite bad, this morning took 15mg and paracetomol and slept, feeling better but sort of a bruised feeling, I still have the worry and will do for a while yet but could this have caused a flare and so quickly? I was diagnosed with GCA in Dec 22, and have struggled below 15mg, I see Rod Hughes so under good care and will arrange to see him when I get home, I’m here in Spain for another 4 weeks, I did try to reduce about 6 weeks ago to 11mg but had to go back to 15mg, Rod Hughes tapper was 15, 12 and half then 10mg so have actually gone slower

[PMRpro Ambassador]

It is possible yes - but there is also the fact that we all have a degree of adrenal insufficiency once we are on pred long term. At the higher doses of pred that is less important because there is enough corticosteroid, albeit artificial, to provide for the ongoing needs of everyday life. But when we have an emergency, of whatever sort, normally the body would respond with a big spike of cortisol to help with the stress in the fight or flight response, When you are on longterm pred the feedback system can't respond in the same way and that spike doesn't happen. And then your body may react in the way yours has done in response to this shock yesterday.

And we would always say not to taper during a holiday or if you do, do it in VERY small steps. A holiday is still stressful, even though it may be pleasurable it is still different rhythms, different weather and more activity than you think sometimes, And now you have another, obviously less pleasant stressor on top. One and half mg is a fairly big step and you say you struggle below 15mg anyway - I would try 1/2mg steps instead. It isn't slow when it works and for some people it needs to be that slow even above 10mg. I see why you want to taper while away as it is a long trip - but maybe you aren't up to it yet.

[DorsetLady PMRGCAuk volunteer]

Further to PMRpro’s comments, and it too late now, but I never reduced just before or during a holiday - even when on a 6 weeks one in NZ… it really not advisable.

Although holidays are usually very pleasurable [if you an ignore the getting there and back] you are still out if your normal routine, and it doesn’t take much to upset the applecart.

I’d be inclined to return to previous dose, and forget about tapering until you are home…

[Mumdadlove in reply to DorsetLady]

Thank you to you both, I will stay where I am and wait till I get home, I think I just thought everything was stable and im so relaxed here more than at home, I was ready for withdrawal but not this, I also suffer with my neck which can give head pain and I will be having steroids injections when home so it is also quite difficult to deflect between the two🤷‍♀️many thanks again

[DorsetLady PMRGCAuk volunteer in reply to Mumdadlove]

Enjoy rest of holiday…

[PMRpro Ambassador]

Enjoy the rest of your holiday and do try to put the shock on the back burner - I know you probably can't but try. Worrying won't change anything - mind you, at a completely different level. you should see the state I get in doing my Italian tax return, it's a shock every year and I panic and can't sleep. A real shock can be so much worse. Hugs

[Mumdadlove in reply to PMRpro]

Thank you both again, life eh🙄x