PUZZLED

[joat]

GCA diagnosed 3 yrs ago. No flares. Got down to 5 1/2 in April but tried 5mgs and pain in bones at back of head and pressure both sides of face in front of ears. Rang Rheumy nurse Pred increased to 6mgs but still tenderness so I increased to 7mgs. The tenderness remained and now nurse says increase to 10mgs for fortnight then reduce at 1mg a month. Was this a flare, if so why?

[DorsetLady PMRGCAuk volunteer]

Hi,

Usually because you’ve gone below the level of Pred you need to keep the daily inflammation generated under control.

Can be as simple as that, but sometimes it’s because you’ve over-exerted yourself or have some other issue going on.

Hopefully the advice you’ve been given will get you back on track.

But at single figures, you need to taper very carefully, as you’ve found out, as even 0.5mg can make the difference between success and failure.

[joat in reply to DorsetLady]

Thank you,did not realise 1/2mg could make such a difference. Felt I had so much more energy and could have done too much?

[DorsetLady PMRGCAuk volunteer in reply to joat]

Easily done! But your PMR is still there, albeit maybe not as aggressive as previously, and as you reduce you are always on a bit of a tightrope, so even the smallest reduction can make a difference.

I don’t think we, as patients (until we get in that situation) realise that, and I’m sure many doctors don’t either.

Take care

[Soraya_PMR]

Pred too low? Overactivity? Stress? Infection? GCA activity increasing? (as it’s not a straight line reduction)

Hope you get on top of it quickly.

[joat in reply to Soraya_PMR]

Thank you.

[jinasc]

3 years with GCA and down to 5mg April this year.

Most of the people I know, who have or had GCA takes about 5 years to go into remission.

The three people I know who got through it in 3 years, where aged between 52 and 56 and all had been diagnosed quickly and luckily had good medics, who proceeded slowly.

Stick at that 10mg and then 1mg, but watch like a hawk, how you feel and if that 1mg feels too much try 0.5mg. I n the great scheme of things, slowly but surely is the way to go and always remember, both GCA and PMR have minds of their own, they come when they want and go when they want, we are just managing with pred.

[SheffieldJane]

You are at the “ tricky” stage, having done marvellously well. My management started to fray at this point. Due to Adrenal function and basically it’s just hard. Who knew the last lap would be so difficult? Patience is the name of the game now. I’d sit at 10 mgs until everything properly settled. You have been terribly ill and you are coming out of the woods.

[PMRpro Ambassador]

Impossible to know - but the signs were definitely there.

If it was a flare it was simply because you had gone to a pred dose that was too low to manage the inflammation being created daily. It may be because the GCA has been chugging along all along or it may be it had been quiet and had allowed you to reduce a bit further but has woken up again. The pred at the start cured nothing, just took you to a safer place with inflammation - and as jinasc says, a large proportion of people take 4 to 5 years to get to the haven of no inflammation. You will get there - just not just yet.