GCA flare

[jeannette65]

Hi all some advice needed please. Just had my first flare, was 6th week at 4 mg all ok then pains in my head again. Put pred up to 10 mg have taken 3 days pain gone. How do l now get back to 4mg? Thanks jeannettex

[Celtic PMRGCAuk volunteer]

Jeannette, if the pain has only just resolved after 3 days on 10mg, then perhaps you would be wise to remain there a little longer to ensure the inflammation is under control and has stabilised before reducing.

In a similar situation, I remained at 10mg for 2 weeks, followed by 7.5mg for 2 weeks, followed by alternate days of 7.5 and 5mgs for 2 weeks, then 5mgs. However, if this proves successful, and I so hope it does, don't be tempted to reduce back down as far as 4mg at this stage. Around the 5mg level can prove a sticking point for many of us, probably due to our adrenal glands trying to get up to speed again having been suppressed by the long term steroids. Look upon 5mg as being your maintenance dose for a while - in my case, my rheumy kept me there for many months. I baulked at the idea at first but, with hindsight, it was great advice because I then successfully managed to reach remission and zero Pred, albeit at a snail's pace, in just half mg reductions.

I hope that works and wish you success.

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

Snap! Great minds at all that!

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Snap! indeed, and hopefully it must be reassuring to Jeannette to read that we're on the same wave-length! Our third partner-in-crime must be having a lie in today!

[PMRpro Ambassador in reply to Celtic]

No, she went out for a walk about the time you posted! I did have a minor lie-in beforehand as it is a public holiday here but despite seriously black clouds we went for our usual walk.

Nevertheless - I agree too. Just for the record.

[DorsetLady PMRGCAuk volunteer]

Hi Jeannette,

What a pain - having got so low, you must be really miffed!

Can't give you personal advice, fortunately never had a flare at a low dose, been very much tortoise-like in my reductions!

However, if it were me I'd try staying at 10mg for a couple of weeks, and then try 1mg drops. Maybe every 2 weeks until you get to 5mg, but you do need to ensure that you feel ok at each level before you reduce again. Then stay at 5mg for at least a month, and then maybe try 0.5mg drops, and using a slow plan. Don't know whether you have done so far - but as 4mg may be your sticking point that may help.

You also have to remember that not everybody can get to zero, you may have to stay at a dose that's good for you. But from personal experience, I would say the slower you do it, the better the outcome. It is very frustrating at times, and you feel you are going to be on Pred forever, but in my mind a drop of 0.5mg every five or six weeks is better than going too fast and risking a flare. Plus, of course, the lower you get, each 1mg drop is bigger in percentage terms, so the effect on your body is greater.

Sure others will come along with their advice, take care and good luck.

[jeannette65]

Thanks ladies I knew you could put me right and I will take your advice. Yes I was miffed at the flare but I would rather put up pred than have that pain. Worse things in life than upping your pred lol x

[Polywotsit PMRGCAuk team member]

Have you let your doctor know?

[jeannette65 in reply to Polywotsit]

Yes I rang and told him what I had done and he just said ok. Don't know why I bothered really x

[Polywotsit PMRGCAuk team member in reply to jeannette65]

Only so he can't turn round and have a go at you for self-medicating!

[Suex2015]

Some great tips and advice Jeanette so thanks to others that have commented.

I had a flare up of temple pain plus double and blurred vision in my right eye, so went from 15 mg of Preds to 60 mg, now down to 25 mg, however flare up kicked in after one week at 15mg. Need to take advice of others and reduce more slowly. Keep the advice/tips & comments coming in guys to help & support one another 😊