Flare at 5mg

[Bern435413]

Hi - sorry if this is answered already in this forum but I have been tapering well and got to 5mg, split 2.5 at 8am and 2.5 at 8pm. Started getting sore upper arms so visited GP who has arranged blood tests later this week. Over the weekend I started getting a great deal of pain in my shoulders and legs, almost as bad as when first diagnosed which I assume is a flare. I went back up to 6mg yesterday but still just as painful. Should I go higher or wait until blood tests are back? Thanks for your help as always. x

[SheffieldJane]

Hi Bern435413,

Splitting my dose has never worked for me. Have you tried taking your whole dose early in the morning with yoghurt?

It sounds like you are flaring though and the advice is to take an extra 5 mgs for a few days until it settles, then return to the last dose that you were comfortable at. I have pain at 5 mgs but it’s not bilateral and doesn’t seem to be getting worse and I suspect Osteoarthritis, but I’m guessing. So sticking with it for now.

[Bern435413 in reply to SheffieldJane]

Thank you, I will go to 10mg for a couple of days and return to 5.5mg where it seemed OK. I have tried taking the whole dose in the morning but couldn't get through the night without pain returning so find splitting it helps me. I may be getting it wrong at the lower dose though i.e. maybe take more in the morning and less in the evening? GP just downloads the same fact sheet about tapering when I ask.

[SheffieldJane in reply to Bern435413]

It pays to experiment I think, just when you think you’ve nailed it everything changes!

[DorsetLady PMRGCAuk volunteer in reply to Bern435413]

Hi,

We normally recommend a 2/3rd:1/3rd split in dose - largest amount in morning. Can't always get it exactly that, but might be better than 50/50 as you are doing at moment.

Plus as others have says, slow taper over a period of weeks as DSNS or this one and definitely only 0.5mg a time -

healthunlocked.com/pmrgcauk...

[Soraya_PMR]

I flared at 5.

I did 10,9,8,7,6 and stayed there.

I’ve flared again at 5 and am trying a different approach to keep within phys dose of pred, this time a few days at 7, then I shall drop to 6 again and stick there for my holiday.

[Bern435413 in reply to Soraya_PMR]

OK thanks, will try that and fingers crossed.

[Soraya_PMR in reply to Bern435413]

Only if your fingers are pain free 🤞😉

[YuliK]

Bern, sorry to read you are in trouble again. It's happened to me too and I'm stuck on 6mg for over 6 weeks. I still have the occasional pains, same as your described but I pop a couple of paracetamol and that does help.

Our bodies are trying to get the adrenal glands to kick in functioning again and we just have to take it easy.

PMRpro has advised even just reducing by half a mg when we are on low prednisone..

I'm following her recommendations and I'm sure it will be ok for us.

Feel well.

YuliK

[PMRpro Ambassador]

Gentle reminder again though: you are not reducing relentlessly to zero however you reduce. You are looking for the lowest dose that works as well as the starting dose did for you. The lower you get, the nearer you will be to that point and there is a very narrow border between enough to clear out the daily dollop of inflammation and not. Even a tiny amount left over will mount up over time - like a dripping tap into a bucket will fill it eventually.

And I would do a few days of 10mg until I felt OK and then go back to 6mg for a while. 5.5mg may work - but it may also be the point at which you were already hovering at the border.

[Bern435413 in reply to PMRpro]

Thank you. Yes I was tapering 0.5mg every two weeks and had a return of stiffness at 5.5mg but thought it was the tapering rather than the start of a flare so continued down to 5mg which in hindsight was a mistake. I will take 10mg today and tomorrow and if OK can I go straight to 6mg or come down 1mg per day to 6mg?

[PMRpro Ambassador in reply to Bern435413]

I'd stick at 10mg for 2 or 3 days and then drop back to 6mg which is fine - although it doesn't make a big difference which you do really.

And now I'd really stay at each new dose for 3 or 4 weeks. This is the stickiest stage. So many think it must get easier as you get lower but now there are 2 things to consider: you must be getting closer to the dose you need AND your adrenal function needs coaxing back to life. Either way - slow and steady is more likely to succeed.

[Soraya_PMR]

Are you using coated or plain pred?

[Bern435413 in reply to Soraya_PMR]

Hi - plain pred, my GP won't prescribe coated as I've asked.

[Soraya_PMR in reply to Bern435413]

They’re b*gg€r$ aren’t they?

Just wondering if you’re missing the boat with your timings?

I take coated between 10 and 12 midnight, catches the cytokines lovely around 4+ hours later. I did try plain at the same time, complete disaster, missed everything!

I suppose if you’re a 1-2 hours absorber of plain pred, you’d be best trying for a 2am dose. But even moving it back from 8pm to 10pm or a bit later if you can manage might help hit the spot?

I was just on 5mg at night, but now having gone back to 7, I’m taking the extra 2 at 8am to ease the evenings. If I can ever get 2.5s from my GP I might try splitting them again.

As Jane says, always worth a little experimentation to see what works for you. For me more at bedtime and the dregs at breakfast works better.

[Bern435413 in reply to Soraya_PMR]

Think I'll try 10pm tonight and see if that helps. Might also try when tapering, reducing the morning dose rather than the evening one. Thanks so much for everyone's advice - I don't know what I'd do without it.

[Soraya_PMR in reply to Bern435413]

We can only pass on stuff that worked for us. Different bodies, different solutions; and annoyingly sometimes different solutions at different stages of the journey.

Good luck.

[GOOD_GRIEF]

Your inflammation tap has been open a while, so it's going to take some time to empty that scrub bucket.

Give it a few days at 7.5 or 10 to get comfortable, then reduce S L O W L Y, and not more than 0.5mg at a time. If it were me, I'd sit at each 0.5mg drop at least a week or 10 days before I'd move lower, and if that goes well, use a DSNS pattern to try moving below the last place I felt well before the flare.

I've split my dose at 50/50 almost since the beginning, and once I reached 10mg/day, I reduced the morning dose by 0.5mg until it was eliminated.

I'm sitting at 6mg now, and have been there for the last month. Looking at 5.5mg next week if all remains the same as it's been.

It could be that you're not ready to reduce further, yet. No one passes out medals for taking less pred. The disease needs the level of medication it needs to keep it in check. At these levels, 1mg or 0.5mg is really negligible as related to side effects, but can make a huge difference in inflammation and how you feel.

The turtles win this race.

[Soraya_PMR in reply to GOOD_GRIEF]

“I'd sit at each 0.5mg drop at least a week or 10 days before I'd move lower,”

Do you experience steroid withdrawal when you drop back by a week at each dose?

I always think I will, which is why I give it a quick blast, then get down to last good level before my body gets ‘dependent’ on the higher doses.

[Bern435413 in reply to Soraya_PMR]

Yes I am sensitive to steroid withdrawal, I think I will try two days at 10mg (today being my second day and feeling the benefit already) and then down to 6mg where I know I was comfortable and then try the dead slow taper.

[Soraya_PMR in reply to Bern435413]

Glad it’s having the desired effect.

I had intended to drop from 7 to 6 today, but looking like a busy day, so will drop tomorrow when I can rest a bit. 5th day at 7 has perked me up no end 😁

[GOOD_GRIEF]

Withdrawal pain increases over time, because it builds as the inflammation builds. Sometimes I've felt ache-y on day 3-4-5 of a drop, and if I can't relate it to weather (I'm sensitive to fluctuations in the barometer) or extra activity or something else identifiable, I wait it out. If it's getting worse, I take a step or two back. If it's abating, I'll wait until I feel settled before moving on. But what we're talking about here is backtracking to kill a flare (or avoid one when you've picked up some nasty germ and need to deal with that. I've sometimes gone back up 1mg or 2 mg when there's a big snow storm approaching (lots of extra activity until it melts) when I feel a cold or some other infection coming on, when I've got a pressure-filled deadline at work, or some extra-stressful event is looming. Being proactive is just part of who I am.

At the levels we're at now, for a normal drop, I sit still for 4-5-6-7-8 weeks depending on the lay of the land and how I feel. Dropping from 7 to 6.5 to 6, for instance, took a really long time because of the cold and wet spring we had this year. I've been at 6 for about 4 weeks now, and am feeling pretty well, especially since the temperature have risen into normal spring range in the last week or so.

So next week, barring the unforeseen, I'm going to 5.5 and probably staying there until after the 4th of July weekend is over. (Lots of parties and I'm hoping not to skip any this year.) We'll see how it goes.

I learned early on - and the hard way - not to let a flare take hold. And this is how I've been able to avoid having a second flare.

Your mileage may vary.