Is management of a 'flare' different to from 'going too low'?

[Lovebikes]

Since going from 3mg to 2.5mg the hip and shoulder stiffness seems to have wracked up, when I bend down and stand up, and lasts all morning . The trigeminy ectopic heart beats that preceded my PMR diagnosis have come and gone but they have been relentless the last couple of months. My CRP that has been <1 or 1 since getting on to pred has gone up to a 'whopping for me' 3 (!) (5 weeks after the dose change). So I think 2.5mg is too little pred and 3mg is probably the right dose for now.

(As another thing to throw in I find that when I drop my dose it takes a couple of weeks for extra twinges and stiffness to go away and I attribute it to waiting for my adrenals to rise to the challenge now that I am on these low doses.)

Since getting a doctor to talk to now seems nigh on impossible I plan to take matters into my own hands.

The NICE, EULAR etc guidelines seem to say that for 'relapsing symptoms' to go back up to the dose that worked; so 3mg. There is often talk on here about adding 5mg for a 'flare' and then dropping back down to the dose that worked. Is the extra 5mg suggested when you have just gone a bit too low, or is it for when the disease activity has kicked off again due to some unspecified trigger (my interpretation of a 'flare')? I'm trying to work out whether I just go back to 3mg or whether I need a mopping up operation first. I've just only ever seen the extra 5mg discussed on this site - which is where I know so much experience lies.

[PMRpro Ambassador]

Have you forgetten that the aim of tapering is not a relentless journey to zero come what may but that you are seeking the lowest effective dose that achieves the same level of symptoms control as the starting dose did? It sounds as if you have arrived - 3mg.

I always find that my arrythmia problems increase if I am on slightly too low a dose - even within days of starting to try a reduction at 15mg.

It is easy in some ways: try 3mg again and see if you feel better, as good as you did at 4mg before. It may be enough if you have caught it quickly. If not, take 5mg for a few days and then go back to 3mg and see if that works. If it does it was due to an overshoot - if it doesn't, you may have to consider it is the other reason for a flare, increased disease activity. If it is that you can't know what dose you will settle at - that is an unknown.

[Lovebikes in reply to PMRpro]

Thank you. Makes sense

[Devonspinner in reply to Lovebikes]

Wow, what a coincidence! I have been at 3 mg for a couple of months so reduced to 2.5mg and within a matter of days I had aches and pains across my shoulders, up my neck to my head, my headache started to come back, so I tried going back up to 3 mg and felt better! I am amazed that a 0.5 mg can make so much difference!

[PMRpro Ambassador in reply to Devonspinner]

About 9+ years ago I wrote a post on another forum called "What a difference 1/2mg makes!" - and that was 1/2mg over 2 days!18mg over 2 days was fine - 17.5mg was not!

[1Unknown12]

I know it doesn't really help but I sympathise. I have GCA and the the tapering is terrible. made worse that the Pred. steroids have not agreed with me. So like you it takes 3/ 4 weeks for my body to readjust. 3.5mg at the moment tapered 8 days ago from 4.5mg.

If I'm honest feeling ----- but hanging in, felt I needed the WD40 yesterday.

There is no real answer you have to find what works for you. Thank goodness for this site your not alone.

[PMRpro Ambassador in reply to 1Unknown12]

Does that mean you are tapering 1mg at a time? And are you using a slowed taper approach?

[1Unknown12 in reply to PMRpro]

Yes every two months. The plan is to come off the pred. if I can and revaluate the situation. Its then finding a suitable replacement for the pred.

[PMRpro Ambassador in reply to 1Unknown12]

I was meaning your reaction to the change in dose - it is less noticeable if you make the changes smaller, 10% of the current dose maximum. And the slowed tapers get you to the same place in the same time but usually with less pain.

healthunlocked.com/pmrgcauk...

is just one of a few.

If it is PMR you have - the only effective alternative is Actemra. If it is something else - maybe there is something.

[1Unknown12 in reply to PMRpro]

Thanks on both counts. You read the advice you give to others and sometimes forget it applies to you too. Thank you.