Tapering: some good days, some less good days ... how to assess disease activity when bloods are within normal range

[Dochaz]

How do you assess disease activity when bloods are within normal range but symptoms fluctuate? I have days when I feel that the condition is in or close to remission, and others when fatigue hits, shoulders stiffen and muscles feel weak. I am currently reducing slowly from 2.5 mg of Pred to 2 mg. I took my first dose of 2 mg this morning because I felt able to after a full month with very minimal discomfort, feeling fine to walk (no hills) a couple of hours every 2 or 3 days, do some weeding and planting about once a week and go to my Pilates class (plus the everyday chores). But now and then I have an off day when I feel too weak to do much and have to rest. Does the inflammation necessarily follow a steady downward curve over the course of the disease or is it to be expected that there will be good days and less good days. I am 1 and a half years in, GCA/LVV and PMR. No pressure from doctor to reduce more quickly, he is happy to let me manage things and prescribes enough Pred for me to do so. I don't feel the "off days" are flares. Just a signal that I need to do less and rest. But I'm curious as to the way the inflammation varies day to day over time and what can trigger it.

[PMRpro Ambassador]

No, I don't think that the disease activity is a smooth downward curve, it is more like a sine wave, waxing and waning so that you might manage well on a lower dose at one point but then it wakes up again and you don't do so well.

Do your poorer days come after good days? Do you maybe overdo things on the good days and then suffer for it? Does it coincide with weather changes? Stress - even admin stuff sends me for a wobbly!

You have actually done brilliantly well to be this low after only a year and a half. But your adrenal function is also likely to be a bit wobbly and it is said it can take a year to settle down fully even after getting off pred altogether.

[Dochaz in reply to PMRpro]

I definitely think some of the wobbly days are due to adrenals stuttering. Haven't done a test yet (although I have a prescription for it) but I know that only shows potential and not actual function. And yes, when I feel well I do tend to be over active and then pay the price afterwards, so guilty as charged!

[DorsetLady PMRGCAuk volunteer]

Would agree with PMRpro - a combination of your illness [18 months in it’s still quite active] and adrenals stuttering…..and there very often isn’t much rhyme nor reason to either. I know that, certainly in relation to adrenals…

[PMRnewbie2017]

Don't forget the 10% rule. Dropping from 2.5mg to 2mg even using a DSNS tapering regime is actually a 20% reduction. You need to be going very slow and steady from now onwards as it can be quite tricky differentiating between the effects of insufficient cortisol and under-dosing of Pred. You have done brilliantly to get this far so fast so steady up a bit.

[BarbB in reply to PMRnewbie2017]

Once I started tapering from 5mg downward I started thinking in terms of decreasing my total weekly dose rather than reducing my daily amount. Generally I reduced by 1 mg/week. I did this by reducing by 1/2 mg every 3rd day so by the end of the week I had taken 1 mg less. After I got comfortable at this level (2-3 weeks) I added two more days a week of 1/2 mg dose reduction (every other day lower dose). I kept track of my doses in a small pocket calendar and filled a 7 day pill box with the correct doses.

[BarbB]

I took 2 years to taper from 5 mg to zero. I definitely had good days and bad days. I had withdrawal symptoms every step of the way as my adrenals struggled to come back to life after complete suppression. It was a bumpy ride but I waited until things had settled down *for the most part* before proceeding to lower my dose again.

I’ve been off pred for a year now and still have occasional mini-flares of fatigue, muscle pain, and hip pain, but nothing that is disabling. I chalk this up to stress or poor sleep or overdoing things and my adrenals are still not operating at full force. I recover with extra rest and stress reduction. I had an adrenal stim test and my AM cortisol is lowish but normal as well as the rise in cortisol after the injection.

I will only go back on pred if symptoms become disabling again, as they were when I was diagnosed.

[Boss302Fan]

I don’t pay much mind to the inflammation markers except for a factor in initial diagnosis. I can only speak to PMR as I had no other diseases to complicate things. My Rheumy checked the markers just prior to each visit (90 days) and they were normal. He attempted to increase my rate of taper and I semi-diplomatically told him to pound sand. If not feeling any pain then it is logical to think the inflammation is under control and the Pred dose is => disease activity, wouldn’t expect the markers to be above normal.🤷🏼‍♂️

I used DorsetLady’s 5wk Simple Taper beginning at 20 mg/d (I was started at 80 mg/d in the ER - don’t get me started…) I hadn’t learned about it until about 6 months in. Starting at 10 mg I used the 10% rule, and I mean literally. And when I got to 3 mg/d I started using 0.25 mg decreases every 5 weeks. No shortcuts…well, very few, once I got to 1 mg/d I skipped week 5 and went to the next 0.25mg decrease.

Now, here’s a key piece. Typically, if I was going to have a flare in was on Day 4 of week 3. Don’t know why, it’s just how it worked out. Regardless, my approach was if I felt even a tinge of pain due to PMR I immediately made up the difference from the new dose back to the old dose, in other words if I was tapering to 4.5 mg/d, the day I felt the tinge I made sure I totaled 5 mg and stayed there for 1-2 weeks before trying to taper to 4.5 mg again. (After having PMR for a least a year you know the difference between pain from PMR or due to something else. Not sure, take Acetaminophen & Ibuprofen together and if the pain dissipates it’s not due to PMR).

Another thing, learn your limits and don’t push them. I found I could do about 60% of an amount of work each day versus pre-PMR and I quit when I got to that point. Do not push it thinking you’ll take the next day easy. That’s a mistake. I was able to do the exact same things before I got PMR, just not as intense or for as long. I learned early on when to call it quits each day, and did so.

PMR isn’t linear. Oh, you’ll get a linear section, but then you’ll find your slope was a bit to steep and it will bite you with a flare, that’s why you go back to the previous dose for a while, to catch up with the inflammation, and try again with a 1/2step to attempt to figure out where the activity is. You’ll find with the smaller steps that the flare is less intense, you can counter it quickly and not wait as long to try again. You get impatient and it’s going to bite you. In my humble opinion 0.5 mg steps from 2 mg are too steep. I guess you can try bouncing around up and down, but to me it makes much more sense to do 5 wk taper schedule with 2, 1.75, 1.5, 1.25, 1, 0.75, 0.5, 0.25, 0 steps as oppose to daily up and down. I know, that’s over 9 months, so? The gradual 10% taper also reduces the risk of experiencing AI.

Again, I don’t know how having GCA/lVV impacts dealing with PMR. All of the above could be a moot point in your case. But I know for PMR alone it worked perfectly for me.

[Dochaz in reply to Boss302Fan]

Lots of useful information in your reply. Many thanks. I generally find it takes a couple of weeks after each new dose for everything to settle down and then I stay there for at least another 2 weeks or until I feel comfortable enough to continue with the tapering.I had mini flares when reducing from 7 mg, and again from 3 mg, but after a week or so following the flare advice given by DL I got back on track.

The 60% of previous activity sounds about right for me too. Lots of rest time too. I've become a scrabble fan, playing against the droid in Classic Words on my phone! Time flies! Playing in French to try to keep my language skills up to scratch as most of the time I read in English.

Best of luck to you. Is your PMR in remission now?

[Boss302Fan]

Are you using DL’s 5wk Simple taper:

Old Dose for days not indicated. Days shown is the new “target” dose. Sun = start of week

Wk1: Sn, Th

Wk2: Sn, Tu, Th

Wk3: Sn, Tu, W, Th

Wk4: Sn, Tu, W, Th, Sa

Wk5: New dose every day M thru Sa

Wk6: Optional, same as Wk5

Wk7: Optional, same as Wk6

After Wk5, 6, or 7 drop dose by 10% and return to week 1.

If feel any pain on any given day, make up the difference in that day’s dose, if any, to equal old dose and stay at old dose until have no pain for at least a week, or two before trying again at same step decrease or 1/2 step.