Tapering from 10mg with GCA

[Janeval]

What is the best way to taper from 10mg Pred with GCA- would it be by 1mg at a time? My Rheumy said by 2.5mg every 2 weeks - I know for certain I am not going to do that! At present I am tapering from 12.5 to 10 with the DS method so it will be a few weeks until I get to 10mg anyway & I'm having a few random 'temple' pains already, although nothing which lasts. Advice needed please.Thank you

[DorsetLady PMRGCAuk volunteer]

Definitely not as Rheumy suggested… I commenced at 1mg per step at around 15mg until I got to 7mg and then changed to 0.5mg per time [adrenals were faffing about at that stage].

However would suggest you don’t reduce whilst you still have the ‘temple’ pains no matter how random- in fact I’d be inclined to go back to 12.5mg, make sure they’re gone , and then 1mg or 1.25mg [if splitting 2.5mg tabs] to 10mg.

You have got to a low dose very quickly… so time to ease up… and despite what your Rheumy may think, still prone to a flare.

[SnazzyD]

Goodness, so you’ve been going what, 8/9 months? So it looks like they want you off Pred after about 10/12 months 🤨.

I did 0.5mg over anything from 4-6 weeks but getting much slower under 5mg. The longest period was 14 weeks, mainly due to slow adrenal function and domestic stresses. I had to dig my heels in all the way with doctors stating that their paper schedule didn’t account for life’s booby traps. That in itself was stressful.

Watch your symptoms but also since you have such a lot of stress, look up sternokleidomastoid muscle pain as tension there can mimic some GCA symptoms. I came close to taking some emergency Pred but was pulled back from the brink by a Bowen therapist on a few occasions.

[Janeval in reply to SnazzyD]

Yes, my Rheumy wants me to go much faster than I am & every time I go he tries to get me on Methotrexate - which I refuse. With everything I have going on at the moment (divorce- husband left me, having to sell the house & numerous other family issues)I do not want the possible side effects of MTX too. I have never had so much to deal with emotionally all at the same time in all my life, so I am going to go slowly as you've all suggested & not at the pace my Rheumy is trying to make me do. I'm living one day at a time & trying my very best to keep sane & calm amidst the mayhem in my life. I'm doing my Yoga for 20/30 mins every day & cycle 10 miles or more a few times a week. Just hope I can get through all this without a relapse or a flare.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

🌸 hope so too…

[PMRpro Ambassador]

The lower the slower!!! Honestly - the man is crackers!!! This is a difficult bit, not only must the GCA inflammation be kept quiet as it could still be there but the adrenal glands need to be brought out of hibernation and that just doesn't happen overnight!

But above all - it is well known (at least I thought it was) that GCA is very prone to flaring up in the first 18 months or so. The pred cured nothing - it is a management strategy and nothing more. And if you have got to 10mg, adding MTX seems a bit superfluous. If they weren't in such a tearing hurry they would get far better results.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

it is well known (at least I thought it was) that GCA is very prone to flaring up in the first 18 months or so

To us - yes, but to those who you would hope know - obviously not !

[PMRpro Ambassador in reply to DorsetLady]

What I mean is - it IS in the literature and the how-to sites. They could actually LEARN about their job!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true…

[piglette]

Oh that your rheumy got GCA or PMR. I wonder if they would follow their own guidance?

[Janeval]

Thank you to you all for your advice & comments. I shall 'go slow', very slow from now on - I am trying to avoid going to see my Rheumy as I know he will be pushing the MTX which he does every time I go & every time I refuse to take it, but he doesn't give up, he just wants to fast forward me to 0 mg & I know & feel that it's not going to happen!

[PMRpro Ambassador in reply to Janeval]

They must learn it doesn't work like that except for a small cohort of patients. Who were very probably misdiagnosed in the first place!

[Janeval]

Yes, I've learnt so much about how to manage this through this forum, I dread to think what state of be in if I'd just followed my Rheumys advice, I'd probably have been back to square one!