Advice on increasing preds

[notnice]

Hi there

I have GCA and just decreased my press from 25mg to 22.5mg three days ago, everything has been fine then I got head pain during the night and all day today, would anyone know if I should increase back to 25mg or how long I should wait before doing so, or should I just stay on 22.5mg and see how things go?

[DorsetLady PMRGCAuk volunteer]

Hi notnice,

You don't say how long you were on 25mg, if for only a short time you may not have got everything under control sufficiently to decrease. 25mg may have been just on the borderline, and going below has brought back the pain.

Or it could just be that the drop is enough for a wobble, I always used to feel grotty for a few days after reductions when I was on higher doses, but although I have GCA didn't get head aches/pains. So you could give it another couple of days to see what happens, and if you still have head pain, then go back up to 25mg.

I would also suggest you don't do an "overnight" drop even at higher levels. You don't have to do the very slow reduction plan if you don't want to, you could try the following:

1st week, 5 days at higher dose, 2 at lower (not consecutive)

2nd week, 3 days higher, 4 days lower,

3rd week, 2 days higher, 5 days lower,

4th week, 7 days lower

Much better to go slowly, than yo--yoing up and down. Not good for you, or your morale! And as somebody else always says - it's not a race.

[notnice in reply to DorsetLady]

Thanks for the reply plus advice it sounds good to me . I was on 25mg 2weeks 5days of which the last 7 days my head was very nice and clear which was why I reduced.

[PMRpro Ambassador in reply to notnice]

Not only spread the reduction as DL says - just do 1mg at a time. 2.5mg at one go is a lot.

And you might find this interesting (it does work)

healthunlocked.com/pmrgcauk...

[notnice in reply to PMRpro]

Thanks for that, it was my rhumie that told me to drop from 25mg to 20mg but I had a flare up last time I tried this so this time I thought to drop to 22.5mg. I was only diagnosed with GCA at the end of Feb so things are still new at the moment and I must say that the advice given on this forum is very good. I will not be seeing my rhumie until November but I can phone him about the reduction If am unsure I will give him a ring next week if I cannot get sorted and ask him about the reduction plan as he writes to my doc so I get the right amount of preds.

[notnice in reply to DorsetLady]

Hi DorsetLady

Can I ask? When I have finished the 4th week of reductions is there a length of time to stay on the lower dose or do I go back to the 1st week and start reducing again?

[notnice in reply to DorsetLady]

Hi DorsetLady,

I saw that you had just returned from holiday but cannot find your post again, I just wanted to say it is nice to see you back and hope you had a good time on holiday.

Sue

[DorsetLady PMRGCAuk volunteer in reply to notnice]

Hi. Yes had great time thanks. Can't say I'm too impressed with British weather at the moment, but it looks good for weekend! DL

[DorsetLady PMRGCAuk volunteer]

Hi notnice,

A couple of things about the reductions - you still need to be sure that the doses are controlling the inflammation, so, if you get a "wobble" anywhen through the process you can go back to the original dose that you were okay at. That's why you need to be stable before you start a reduction.

Therefore, if you're going to try the 4 week one I suggested, I would suggest you stay on the reduced dosage for a couple of weeks before you start the plan again, BUT only if you are sure everything is okay.

Once I reached 15mg I started on the slow plan recommended by PMRPro, and find that I can keep it rolling without having to plateau out. The only exceptions I made was when I went to NZ for 6 weeks, stayed on 6mg and this Easter when I went to my son, stayed on same dose for 10 days.

Also, consider reducing by 1mg as suggested by PMRPro (and by 1/2 when you get to single figures) - the small difference and the slow reduction does seem to stop your body reacting adversely.

It may sound a long process, but if it stops the blips, which it does for me - on the previously "overnight" drops I had a couple of bad reactions - it's worth it.

We all want to be off Pred, and hopefully most of us will be at sometime, but as I said before it's not a race to get there, it all about controlling the inflammation. Goid luck, DL

[notnice in reply to DorsetLady]

Hi Dorsetlad

Thank you very much for that information it helps me a lot, my head has not been clear for the second day so I am going back to 25mg tomorrow, get stable then try your method of reduction. Thanks again.