A flare and cutting down

[Mumdadlove]

Hi All

Sorry to bother you all again but you have been so helpful to me this week, as advised I upped my steroid to 25mg I think this was on Sunday, sorry real brain fog now and my little book it at home in the Uk)

I came away with girlfriends on 10th Sept, I had felt a little anxious before so had upped from 15mg to 17 and a half, after my hectic few days felt awful and upped to 20mg 14th Sept, didn’t help headaches or neck pain so upped to 22 and half, after advice on here upped to 25mg, still there, much improved, have been taking pred about 4am(wide awake and seems to kick in for the morning)

I’m now totally confused as to if I can go down maybe to 17 and a half if not on 25mg for 2 weeks, or do I have to take into account the other increases and if over two weeks I have to taper again, sorry I hope this makes sense

I have an appointment booked for 7th Oct with Rod Hughes that will hopefully be able to get me back on track

The neck headaches seam to kick in during the night, also the eye pain, so still thinking could be neck muscle, I didn’t bring my neck collar with me and of course different pillows, or maybe I’m just looking for excuses for it not to be GCA

Thank you all again and hope this isn’t to jumbled

[DorsetLady PMRGCAuk volunteer]

This is what I said in last post-

I’d be inclined to try 25mg- but you need to give it time to work -you can give it another week without worrying about dropping back down. So long as you aren’t on increased dose for a total of more than 14 days it’s okay

Think it’s probably a combination of overdoing things… in fact everything you could do to cause an issue , you did! One or the other may well have cause a flare - but you really went for it! 🤦🏻‍♀️.

If the 14 days is up before you get advice from Prof Hughes, then maybe drop back to 20mg for a 5-7 days then to 15mg.”

As you went away on 10th did you originally increase before or after then?

If after then, you are just about reaching the 14days- if before then you’re over that.

To be on the safe side and taking into account you are still away from home I’d do -

To 20mg for 5-7 days -then see how you are and then decide whether you go to 17.5mg or try 15mg.

[Mumdadlove in reply to DorsetLady]

Perfect thank you, yes I increased before I came away, had been on 15mg for about 4 weeks, so the increase to 17and a half has pushed me over the two weeks, will cut down maybe Friday to 20mg and go from there, thank you just needed it confirmed, so helpful as always!

[PMRpro Ambassador]

It shouldn't actually be too much of a problem reducing the dose because you are well above 7mg which is about the normal adrenal function threshold. You were at 15mg beforehand weren't you and that is well above adrenal territory, they wouldn't be doing anything and there is no adrenal function to have upset with the few weeks at a higher dose. Do you get what I'm trying to say?

[Mumdadlove in reply to PMRpro]

Yes I understand, thank you, I will see how I feel by Friday and then reduce, if I make too much of a reduction would I get worse withdrawal symptoms, I always feel a bit odd for a few days but if that’s the only thing I can cope with that

Thank you!

[PMRpro Ambassador in reply to Mumdadlove]

Withdrawal symptoms tend to be worse when you have been on a dose longer - but I suppose you have to decide whether you prefer to do it all in one and get it over with or suffer for a bit longer!

[Mumdadlove in reply to PMRpro]

Thank you, will get home from hols and go from there, I’d rather get back down as I can already feel more side effects from the higher dose but will only do it if headaches etc gone, thank you so much

[PMRpro Ambassador in reply to Mumdadlove]

I wouldn't change dose again much until you are home - how long more is that? So difficult to say and I do get why you want to go back. But you are on holiday, out of your normal routine and you've had a flare. Adding another variable isn't a good idea.

[Mumdadlove]

I’m home next Monday evening so by then will have been on 25mg for about 8 days but had increased slowly from 15 since about the 8th Sept, I think the slightest amount of stress just really affects me, I will stay on 25mg until home and then maybe try 17 and a half or 20mg as of Tuesday, Rod Hughes on 7th Oct, I’ve just got myself in a bit of a pickle with all of this now, this morning I woke about 2.30am back of scull and eye pain, took my pred woke at 8 still had pain, took paracetomol and got up and now pain has gone, I seriously wonder if it’s the way I sleep, but it’s the worry of what if it’s not, thank you again for your help, have a lovely Thursday

[DorsetLady PMRGCAuk volunteer in reply to Mumdadlove]

Could be different bed... another reason why we say you are out of normal routine when on holiday.

Despite the fact you've been at higher dose longer than we might usually suggest, I agree with PMRpro - wait until you get home before you reduce.. and maybe still give it a day or two.

[PMRpro Ambassador in reply to Mumdadlove]

You can still reduce back to 15 relatively quickly despite adrenal concerns - they don't come into play until nearer 10mg although you might feel the steroid withdrawal effects that are just due to change of dose. The bed does sound a possibility - difficult on a plane but I used to take my pillow with me when we were away with a car!

[Mumdadlove in reply to PMRpro]

I need to remember when I go away neck time to take my sleep neck support, it’s only a 1hour 50 min flight home so that should be fine, I’m going to keep myself boosted with 25mg until Tuesday then try 15mg from there, thank you so much, sometimes you just need to have it written in black and white for it to sink in(well I do lol)