How quick on reduction can you experience a flare?

[Tui378]

Hi. I have 'presumptive' GCA - since April. Started at 60 mg in April. Have followed various Drs instructions to reduce but always got GCA symptoms back before 20mg. I have reduced today (12 hours ago) to 22.5mg prednisone from 25mg as per latest taper plan. Apart from more tiredness than usual in last couple days I have been feeling pretty good. My main issue today is a bad headache. I've been headache free for couple weeks maybe. This seems rather quick to be getting this if its a flare up but I have no idea. What are your thoughts?

[DorsetLady PMRGCAuk volunteer]

I’m a bit concerned that that the headache has returned so quickly...it could be steroid withdrawal, I found it only lasted a couple of days, although it can be longer.

With your issues getting lower than 25mg I think maybe you have to consider it could be a flare...although as you say a bit quick.

You have 2 choices really -

sit it out for 3-4 days hoping the headache subsides, or

go back to 25mg, get rid of headache, stay there for at least 2 weeks, but 4 would be better,

Whichever option you take, I think it might be sensible to reduce by 1mg in future.......you need to get stable - which you obviously haven't been recently.

[PMRpro Ambassador]

If you are just on the borderline of enough and not enough then symptoms can return very quickly after reducing below what you need. The fact you sound to have been yo-yoing the dose a bit makes it more difficult and can easily add to the time it takes to reduce successfully. Is it the same sort of headache you had before with the GCA. If you have only been GCA-headache free for a couple of weeks you would appear to be very much on the borderline re dose.

Have you tried ordinary pain killers for the headache? If it is reducing the pred then that would help - it won;t with GCA.

[TheMoaningViolet]

Hi, I always get withdrawal headache and it always responds to paracetamol (however I have PMR). During my last taper, there were days when I took 2 doses of paracetamol , but you could go up to 4 if required.

I do hope this is just a withdrawal pain and not a flare, but of course with GCA as an assumed diagnosis you need to be ultra vigilant.

[Telian]

You could be suffering withdrawal symptoms or it could be a flare.

As DL says you could sit it out for a few days when withdrawals usually go, or go back to the previous dose you were symptom free on before reducing again.

I would try a much slower reduction too from now on of 1mg. Listen to your body.

If the headaches don’t go on 25mg see your doctor.

If you get any sign of visual disturbance go straight to A&E.

I’m going through what you’re experiencing at a much lower dose. It’s my second time around and can only reduce by 0.5mg. I’m 6.7 years GCA and PMR.

Best wishes.

[Tui378]

Thanks everyone. The headaches responded partially to paracetamol but I did still feel awful independent of the headache in first couple days. I am feeling a lot better so I think it was a withdrawal effect. Will stay on 22.5mg at this stage for 3-4 weeks. All three docs involved are saying go down 2.5mg again but I have 1mg tabs so might just ignore them! They'll cope.