Tapering/flare?

[NewPMR53]

morning

Have not posted for a while but read regularly.

I’ve been tapering and had successfully gone from 20mg to 12.5.

Now trying 10mg (rheumatologist wanted me to go straight from 15 to 10 but I refused and gp agreed with me). And it is not pleasant.

I’m not sleeping, am having waterfall hot flushes, pain is back in shoulders, buttocks and feet. Though not at pre diagnosis levels. The worrying thing though is a daily headache. It is not constant but is about 60% of the day. My eyes hurt as I move sight direction if that makes sense? But I’m exhausted so could that be the cause?

Ive done 10mg Fri and sat. Did 12.5 Sunday. Back to 10 mon and tues and today.

Is this all normal as in it’s just too much reduction in one go so I’m flaring or should I be being cautious because of the headache and eyes issue? I don’t want to be a drama queen but TA/GCA worries are in my head.

Thanks in advance you lovely people. 😊

[DorsetLady PMRGCAuk volunteer]

Would say too big a drop.. and as for Rheumy’s suggestion - absolute bonkers.

Sometimes it is difficult first few days to know if its steroid withdrawal or a flare - but it’d be inclined to go back to 12.5mg.

Stay there for a week, and see if things settle, then maybe try a smaller drop - your 2.5mg tablets can be cut provided they are not the coated ones..or request 1mg from your GP, who seems to be be much more sensible than Rheumy.

Many of the symptoms you describe would indicate you have gone too low, but do monitor the headaches - are you sure it’s not a virus or tension? But you probably do need to mention to GP if going back to previous dose doesn’t help.

[NewPMR53 in reply to DorsetLady]

Thank you DorsetLady. Will email GP now re smaller tablets. And will pop another 2.5mg now. Your advice is hugely appreciated.

[PMRpro Ambassador]

Was none of that present at 12.5mg? If that is the case - I would go back to 12,5mg and stabilise again. Then try 1mg reduction and see what happens.

And googling it - pain when moving eyes does elicit warnings to seek medical advice. The most common cause is eye strain and that can also cause headache but who knows. And the other symptoms do suggest you have gone to too low a dose.

[piglette]

Unfortunately steroids do have side effects. One being the waterfall effect. I used to tell people I had been swimming! It goes away around 10mg, in my case anyway. The sleeplessness is something that often happens too. I learnt to love the BBC World Service. As the others say it sounds as if you have reduced too quickly. I had a rheumatologist who wanted me to reduce like that and the result was a nightmare for me. I gave up the rheumatologist.