Headaches. GCA.

[alvertta]

I reduced to 20 mg last week from 25. Plan to stay on 20 for a month. I have a daily headache. Does that mean 20 is not enough? Eyes are ok.

[fmkkm]

Hi alvertta,

Sounds like too steep of drop. It’s been a week and the headache is persisting so maybe best to go back to 25 and do a more controlled taper. DL just reposted hers a day or so ago and most people have success with it.

[DorsetLady PMRGCAuk volunteer]

As forwardmotion says, probably too big a drop. More sensible would have been to 22.5mg. You could try that initially for a few days and see if it’s enough, if not then maybe only option is to 25mg. Get things on track and then try again, but not 25- 20!

Remember the mantra - do not reduce more than 10% of existing dose!

[PMRpro Ambassador]

No reduction in a taper should be more that 10% of the current dose - your 5mg drop was double that. When you change the dose too much your body objects - and the steroid withdrawal symptoms are very similar to the illness for which you are taking the pred.

If it were me, unless that headache is improving now, I would go back to 25g and then drop by 2.5mg each time as far as 15mg - then, at the very latest, you need to switch to 1mg steps.

[alvertta in reply to PMRpro]

Thank you. 🙏🙏

[alvertta in reply to PMRpro]

How long do you think I need to go back to 25?

[PMRpro Ambassador in reply to alvertta]

Until you are sure the headache is improved,

[alvertta in reply to PMRpro]

Thanks. Back on 25 as of now.

[Hidden in reply to PMRpro]

Your reply is helpful to me too. Rheumy just wants to hurry it up for me and I keep having setbacks. 6 mos in and she’s talking about adding Actemra or MTX at this point. Is that common? Oct 2018 Started at 60, then up & down to 22.5. Then flashing lights in 1 good eye, jaw, scalp tenderness, temples. She said go up 2.5. I opted for 40 as worried about sight I have left. Needed to go to 50 to relieve symptoms. Dropped back quickly, now at 35. Jaw pressure comes & goes. Now what?

[Hidden in reply to Hidden]

Oh...last quick drops due to it’s been 2 weeks since flashing lights & increase.

[alvertta in reply to Hidden]

I made a schedule of mg for the next two years. Based on the Edinburgh journal study. Plan to amend that to the 10% rule. Not sure how long to stay on each level.

[PMRpro Ambassador in reply to alvertta]

Don't plan that far in advance - take it month by month. It saves disappointment.

[alvertta in reply to PMRpro]

I am a big planner.

Lol. Lifelong habit. We are going to Norway on July 17. Planning to be down a bit by then. Thank you!!

[Hidden in reply to alvertta]

I stay at each level until i feel at least as good as the previous dose - pmr wise. I tend to deal with what's immediately in front of me - i have social goals- A bit of a weekend away, time with family and friends, watch a film etc. But i wouldnt want to deal with the stress if being so goal oriented in a tapering plan. I do what my body tells me to do. You may be someone who likes a good plan, gets motivated and feels in control of where you are going and how you will get there. But be prepared to be disappointed sometimes!🌻

[alvertta in reply to Hidden]

Thank you. This is the first time a reduction had lead to headaches. So I am back up for a week. Then I will see. My sed and protein blood test this week was good.

[Hidden in reply to alvertta]

But they are "good" because pred is controlling the inflammation at the dose you were on. Not because you are "better" than you were....yet. thats why staying at a stable dose for a while helps us understand the picture more than a rollercoaster ride...you never know which dose was working! Obviously at ghe 40plus i can understand trying to reduce but you need the amount of pred you need.

[alvertta in reply to Hidden]

I was at 20 from April 1. So I guess it was not enough.

[PMRpro Ambassador in reply to Hidden]

More haste less speed ...

I am left to wonder if they get bonuses for getting patients onto Actemra...

[Hidden in reply to Hidden]

It would be nice to see if staying at a good dose for just a short while pred stablises the symptoms you are getting. Thats only 6months ! Surely a bit of a stutter would occur with this regime in all cases. I would be sitting where i had fewest symptoms and manageable pred effects.

[Cyclegirl54]

I’m on 25 mg presently and dropping to 22.5 in a few days time. Slowly does it! All the best .