Flare has subsided--now what?

[judyb100]

Thanks to all your good advice, I went up to 12.5 mg of pred after a flare at 7.5. I've been on 12.5 for almost a week, and I feel good and have hardly any stiffness--even in the morning.

After the flare at 7.5, I went for 2 weeks trying out various doses from 8.0 up to 10.5 but none of them helped. Before then, I'd tapered down to 7.5 and had felt pretty good (tired but only a little stiff). Then I caught a bad cold and the PMR came roaring back with all its stiffness.

Coming from 12.5, can I drop all the way down to 7.5 or 8 or 9, or do I need to start over again with the DSNS?

I've had PMR since 11/2016. Started at 20 mg. I've reduced to 7.5 three times and have always had a flare at that level. I thought I could do it this time because I've generally been feeling a lot better. But my friend PMR had other plans for me.

Thanks for any advice!

Judy

[PMRpro Ambassador]

Well it definitely sounds as if 7.5mg is a step (or two) too far - if you have repeatedly flared at 7.5mg that is your body pointing out quite firmly that it is too low. Reduce to 7.5mg and you will almost certainly flare again. You've only had PMR for 18 months, this is still very early days and to be at 8mg is not bad going. In GCA it is very common to have flares in the first 18 months - and the same probably applies to PMR as they are, to all intents and purposes, the same disorder but manifesting a bit differently. PMR has a median duration of 5.9 years - less than 20% of patients are off pred in 2 years. The dose you are likely to end up on is low, a physiological dose (about the same amount of corticosteroid as your body produces naturally in the form of cortisol) and unlikely to cause significant problems:

practicalpainmanagement.com...

If it were me I would try dropping back to 10mg and see how that goes. And if it is OK, DSNS to 9mg. Then go in 0.5mg steps to 8mg. But no further. And if you have any niggles, back to the previous dose.

This isn't a race. You have done very well to get here and 1mg here or there is peanuts compared to what will happen if you try to force it again. That supposed advantage of the 1mg less is negated very quickly when you have to go back to a higher dose because of a flare - and it can become increasingly difficult with each flare.

It doesn't mean you won't get lower - just not yet. And I'd give it a few months before trying again.

[judyb100 in reply to PMRpro]

Thanks again, PMRPro. Your advice is worth its weight in gold. I'll try dropping to 10mg and see what happens. If I'm feeling pretty good at 10 mg. how long should I stay on it before DSNSing?

I'm going to try to avoid another flare. And also I'm going to avoid the advice from my rheumy, who wants me to reduce as fast as possible.

I read the interesting article you attached about steroid side effects. Very timely for me, since my cataracts did indeed get much worse with prednisone. Yesterday I had my first cataract surgery, and I'm in awe of how much better I can see!

[Telian in reply to judyb100]

Just want to agree with you that the Two Ladies are spot on again I/we know that detail but cannot articulate the way they do, maybe just become lazy as know they'll be coming along.....

I was pleased to hear your catatact surgery was a success as I'm going for the same in a few months - once my current flare has settled.

[PMRpro Ambassador in reply to Telian]

9 years of practice saying much the same thing in my case...

[Telian in reply to PMRpro]

...and you know what they say practice makes perfect, could if I had to but why when it is in both your capable hands - it hurts my brain too much at the moment, I can't even spell words I've always known and get my words back to front often, yet have always been good at English! Is it the pred?

[PMRpro Ambassador in reply to Telian]

Probably - although the autoimmune part of the PMR can produce a good brain fog!

[Telian in reply to PMRpro]

Didn't know that, Prof D is now saying he doesn't think I've got PMR as US showed OA in the shoulders, which I knew anyway I've got it in the upper body, it's just the pain gets really bad just the same as PMR, how do I know the difference I'd like to know?

[PMRpro Ambassador in reply to Telian]

You don't - and nor does he! You can have both.

[judyb100 in reply to Telian]

I don't know what we'd do without the Two Ladies (and everyone else on this forum)!

The cataract surgery has been really amazing. I had the surgery two days ago and my vision is so much better (and I haven't even had the second eye done yet). My eye is still somewhat swollen and I have to take eye drops for a long time, but I'm not complaining. It's a miracle to suddenly have vision like when I was a child!

[Telian in reply to judyb100]

Hear hear...

I am so pleased to hear the op went well, I am quite squeamish where eyes are concerned....

[PMRpro Ambassador in reply to judyb100]

If you feel OK - you can try a small and careful DSNS. Except I would wait until you are properly over the cataract op - when is the second to be done? However simple it felt - you will have been stressed. No point spoiling the ship for a ha'p'worth of tar...

[judyb100 in reply to PMRpro]

My second operation is 2 weeks from how. So maybe I should stay at 12.5 until after that. As my doctor said, the incision is very tiny but there's still some inflammation from the surgery.

[PMRpro Ambassador in reply to judyb100]

I wouldn't rock any boats until the other is done.

So jealous!!!!!

[judyb100 in reply to PMRpro]

Thanks again. I'll stick with 12.5 mg until after my second eye is done. I wasn't sure if I should have this surgery now along with my PMR, but the prednisone has made my cataracts much worse than before. Friends and relatives who've had cataract surgery have been so positive about it, and now I see what they mean.

[DorsetLady PMRGCAuk volunteer]

Good advice from PMRpro - nothing to add!

[judyb100 in reply to DorsetLady]

Thanks, DorsetLady. I'm on the right track for sure when both PMRPro and DorsetLady agree!

[DorsetLady PMRGCAuk volunteer in reply to judyb100]

Oh....we always agree! It’s the others we have problems with 😳

[PMRpro Ambassador in reply to DorsetLady]

[Hirwaen]

Could anyone describe what they mean by a 'flare'. I am alternating between 7/12 and 8mgs each day but have pain across neck and shoulders most days after being more or less pain free on 8mgs. When I was diagnosed with PMR I was barely able to move and thought a flare would mean I would back to square one but perhaps it doesn't need to be that bad to be considered a flair. Sorry for the long message!!

[Rugger in reply to Hirwaen]

If I had been more or less pain-free and then developed pains in my shoulders and neck (and I have!) then that is what I would call a flare. I would stop reducing, but consider increasing my pred, as judyb100 has done. I would discuss with my GP too. The sooner you nip a flare in the bud, the better. There could be another cause for your pains, such as doing too much in the garden or house, or lifting something awkwardly, but generally we know if we've done that, I think.

I have had 2 flares and neither of them were the same as the presenting symptoms at diagnosis. The first flare was bursitis in both hips and both shoulder joints. The second was more as you describe - pains and stiffness in shoulders and neck, but not as severe as when undiagnosed / untreated.

I increased my pred from 5.5mg to 8mg at Easter this year and am just ready to start tapering down again, at 0.5mg / month DSNS. My GP and Rheumy both agree this was a flare and that 8mg is a suitable dose, by the way. I do wonder if I would have got on top of it sooner if I'd increased to 10mg, but it's all trial and error.

Don't apologise for length of your message - my reply is longer!

Me: PMR 2 years. Lowest pred 4mg, now on 8mg (see above)

[Hirwaen in reply to Rugger]

Thankyou, that has really helped,I shall return to 8mgs daily and see if soreness subsides and if it doesn't I will increase a little more. I have had PMR since March 2017 so need to learn not to rush things at this stage!!!