Once again… flare or no flare?

[Burroughs123]

Hello wonderful people.

In March/April I posted saying that I wasn’t sure I was flaring and I’m back to the same question again.

I have developed aches in my upper/under arms (bilateral) that are slowly and steadily getting worse. Last time I experienced this - and after consulting you lovely lot - I went up from 5.75mg to 12mg for 10 days and then dropped down to 7mg and started slowly tapering again. I wasn’t sure if a vigorous massage had set it off or if I was overdoing the exercise and had aggravated my cervical spondylitis. My markers showed nothing up (they haven't since starting on pred) and I wasn’t experiencing stiffness or aching first thing in the morning.

I usually drop 0.25mg every 4-6 weeks and have done that from 9mg downwards with a few rests on a dose here and there. I have been on pred for just over 4yrs.

In March/April, the aches eventually went away after a month or so. I took naproxen (with lansoprazole) for a few weeks at that time and that really seemed to help so part of me thought that it couldn’t be PMR related if I was responding well to naproxen and consequently put it down to cervical spondylitis and continued to taper.

I have tapered down to 6.5mg and have felt a few minor tweaks now and again which I dismissed as “other stuff”. I dropped to 6.25mg 2 weeks ago and the aches have increased. They are slightly worse than they were in March. I definitely don’t wake up aching or stiff but as the day goes on, the aches increase. They come on when I move my arms but are “quiet” when I’m resting. I have tried paracetamol today but that hasn’t really helped. I might try naproxen tomorrow and see if that makes any difference.

I spoke to my Rheumy about the symptoms in March and she suspected that either the massage or a possible virus may have brought them on. She was happy for me to follow your suggested flare protocol and to see how it goes. My next appt with her is in early Sept.

I just can’t seem to get below 6.5mg! I feel fine in myself, in fact I have felt really really great recently. My HbA1c has fallen from 41 to 40 and my blood pressure is back to normal.

I’m off for a 5 day break abroad next week and have got a busy schedule for the next 3 weeks with my kids. I’m meant be having my typhoid vaccination tomorrow (off to Kenya in Sept) but think I should postpone that until the aches are under control.

The question is do I increase to 12mg again and repeat the same protocol or wait it out and see if the naproxen deals with the aches and proves it’s the cervical spondylitis??

As always - many thanks in advance for your support and advice.

[PMRpro Ambassador]

If you flare repeatedly at a similar dose - 6,5mg for you - that is your body telling you that you have reached you interim destination of the lowest effective dose. You aren't tapering relentlessly to zero - you are titrating the dose to find that lowest effective dose, the lowest dose that gives the same symptom relief that the starting dose did. It doesn't mean you won;t get lower - just not yet. And when you try to force it to get lower and a flare happens, each time risks making getting things under control again harder.

I would IMMEDIATELY go back to the last dose where you were fine - it may be that is enough. But if it isn't you know what to do - bearing in mind what you are planning for the next few weeks. And next time, take the hint and don't set off on a taper straight away.

[Burroughs123 in reply to PMRpro]

Thanks Pro. I will take on your words of wisdom and go up to 12mg for a week or so and then see if I can drop back to 8mg. I’ll try and bury my frustration.

[DorsetLady PMRGCAuk volunteer]

I just can’t seem to get below 6.5mg!

Then as PMR-has said … that is your limit for time being….and agree with her advice.