What is the typical interval between a dose taper and a resulting PMR flare?

[ARNEMRRM]

I am wondering how many days after a specific dose taper until one might conclude that the taper was successful and they are eligible for a further taper? Put in other words, if a steroid taper is to induce a flare, what is the typical interval between these two events? Perhaps those of you have suffered post taper flares might tell the rest of us how long after the taper you became ill? I'm guessing the numbers will be all over the place, but it will be informative to see what is typical, and what are the short and long ranges...

[DorsetLady PMRGCAuk volunteer]

Hi,

Bit like - how long is a piece of string? Probably as many answers are there are patients!

Can’t really help as I never had a flare, but for a semi educated guess I would say that if you have tapered and after a fortnight you have had no return of symptoms then it’s fairly safe (although not guaranteed) to assume you are okay. However I always left a month to make sure when I did an “overnight” drop. As I got lower and started using my own slow taper, I normally went straight from one to the next.

If you are going to flare, then it may happen within 4 or 5 days, it really depends how well your previous dose was controlling the inflammation.

Not a lot of help really 🤷🏻‍♀️. Plus of course what works for me, may not work for you, nor anyone else on this forum. As we all know, neither PMR nor GCA conform to the rules, and it would seem neither do the patients! But interesting question.

[Hollyseden in reply to DorsetLady]

Interesting to read that you never had a flare, Dorsetlady. Maybe that's proof how effective your dead slow taper is. When I saw that question, it got me wondering how many folks are lucky enough not to suffer flares. I'm new to tapering, so I'm curious.

[DorsetLady PMRGCAuk volunteer in reply to Hollyseden]

I don’t know, maybe with PMR you are more likely to get a flare than GCA, although I do know a couple of ladies who have GCA and are having problem with flaring.

I always think because I started way above the usual starting dose (for reasons you know) my inflammation was really hammered hard in the first few weeks. Mind you it had been building for 18months so I guess there was plenty to control! My reduction from 80mg down to 20mg was done at either 2weekly, 3weekly but mainly 4weekly intervals, always after a ‘good” blood test and me confirming I felt okay.

Because it was diagnosed in hospital by an Ophthamologist, after the first weeks when they were happy about my remaining eye I was referred back to GP - not to a Rheumatologist. The GP and I discussed a plan, which got amended along the way, as all good plans should be, and because of the situation she was ultra cautious about tapering, so never rushed me, which obviously helped. I did see a Rheumy once, but he wasn’t really interested, and said plan with GP was okay, so I didn’t bother to see him again.

From the twenties down to about 11mg I stayed on the monthly reduction scenario. I then changed GP surgeries, and after a couple of months he said he’d leave me to my own devices with access to him as I needed, arrange own blood tests etc. Once I got to about 7mg I started by taper and also 0.5mg reduction.

I always find it strange that in the guidelines there’s a mention of patient’s flaring and how to treat it, so why don’t they recommend a slower tapering regime in the first place.

[Hidden]

When I was originally tapering from 15mg at 1mg a month I found that for four days I had a sore shoulder which then calmed. When I hit 10mg, therefore 3 months or so in to taper, the pain in my thighs returned in second week of drop from 10 to 9mg. Then more gradually my arms andshoulders bilatetally and the dreaded fatigue and woollyhead started to return during the next 2 to 3 weeks. At 8mg full symptoms back and inflammatory markers above those at dx.

I think my shoulder pain was steroid withdrawal and thighs etc PMR flaring. Went back up to 12mg on gp say so and was on that for 3 months when got rheumy appt and he put up to 15mg again. As DL says Every One will have their own experience. It's learning to distinguish what symptom indicates what for you. Been on 10mg for about 6 weeks now waiting to drop to 9mg after a holiday. I am taking mycophenolate but waiting to drop until holiday over. Don't know if this helps. But basically if symptoms start returning and continue to get worse at next drop them possible flare I would say...again for me.

[PMRpro Ambassador]

There really isn't an answer other than how long is a piece of string!

We usually advise a month at each new dose - of you went straight from every day old to every day new dose. If you use the Dead Slow approach

healthunlocked.com/pmrgcauk...

many find they can just start on the next drop once they have completed the last - but some still like a couple of weeks to stbilise.

It is never a race - more haste less speed all too often. Steroid withdrawal usually happens immediately after you drop the dose and then improves. A flare typically takes a while - but how long is impossible to say because it really depends on how much too low your new dose is.

[SheffieldJane]

Hi Arnie, I am flirting with 6 mgs at the moment, I take 7 mgs. three days this week (4 days 6 mgs) My body doesn't like the 6 mgs days and begins to protest with headaches, awful fatigue and stiffening up. I feel this within hours of my early morning dose. Today it felt like it was becoming flare- like so I took 1 mg in the afternoon. Every symptom improved within a couple of hours. The trouble is that I now feel wired and it's bedtime. I think this means that I ought to stay at 7 mgs for a week and then try going down by 0.5. My worry is that one of my doctors would say that's nonsense and I should be getting off Pred faster, the spectre of Methotrexate will be raised again and yet I feel as if I know what I am doing. I have reduced from 20 mgs over a 19 month period with very few sticking points quite steadily using a version of dead slow nearly stop. This bit is the hardest.

[-LJ-]

I am so lucky to have found this forum even before I was diagnosed and medicated!! The minute I read this PMR might go away, I felt so lucky...if I had to have something...this would be ok. My next biggest concern (other than the dreaded prednisone (which is now my miracle drug), was the dreaded FLARE I was reading so much about!! I pretty much decided I would go SLOW and do everything I could to avoid such FLARE! It became a mission!

I started in oct, 2016 with 15....still sore in a few weeks, so went to 20. Stayed for about a month, then started my tapers. Dropped to 15, 12.5, 10, then usually 1mg a month, but stayed longer much of the time because of travel, etc. seems like about 6 weeks was my norm. I was always very aware for about 5 days....if I still felt ok, I would not go back. Now, one year later I am at 5 with no flares. I am reducing by .5 now, just in case.

Maybe it is just luck, as everyone is so different with PMR. But I think if you just listen to your body (and these wonderful people, of course), and don't be afraid to stay on a dose longer than the Drs recommend (seems most want you to reduce quicker), be as pain free as possible with your dose, you will have a better quality of life with this bugger disease! Control it....don't let it control you!!

[marigoldb]

Hi Sheffield Jane,

I know just what you mean by saying your body picks up on the taper I do a very slow taper, takes 5 weeks to get down to the lower dose. I’m trying to get from 5 to 4, but the symptoms all came back, and so this past week I’m back on the 5 again. Really fed up, as have significant osteoporosis, can’t wait to get off prednisolone. Had full blood count yesterday, so wait and see? Sometimes it’s hard to be positive isn’t it?

Yes just a bit of feeling sorry for myself! But I do have a lot to be thankful for, so I’ll buck up and carry on carrying on as they say!

[PMRpro Ambassador in reply to marigoldb]

You'll be at an even greater risk of osteoporosis is you don't stay at the dose of pred you need. Immobility is a major risk factor for osteoporosis!

Your body is telling you it needs 5mg - not 4mg. Try to force it and you will end up with a proper flare and needing to go back to 10mg or even more.

[podo]

Good question ARNEMRRM. In my case(s), I got right off Pred for 19 months first time, 5 months second time, 4 months third time and 3 months fourth time. Next time I got to 2mg for over a year and then got a flare. So, is this a case of one disease course or several unrelated events?

[PMRpro Ambassador in reply to podo]

I'd say it is now like me - a long-standing problem that keeps flaring.

[daworm]

thankfully my Dr. even though not experienced at all with a patient with PMR, listens to me, when I thought I should go up to 20 from 15 at first, he said sure lets try it, now we are going from 20 to 15 and he must understand sloooow because we went to 17.5 for now...3 weeks then to 15....so far no problems...glad I didn't have to fire him.....

[daworm in reply to daworm]

by the way, I get almost all my info and tips about flares, tapers, dosing, from right here on this forum...he just smiled when I told him about it...

[Hidden]

Diagnosed in December 2017; started on 60 mg. Rheumatologist tried tapering me by 5 mg every 7 days. Got to 45 mg, crashed and burned! Am now on 80mg and reducing by 5 mg every 10 days till end of March. Then we will try reduction of 5 mg every 30 days. Fingers crossed! Good luck,

[Rosedail]

Hello: Just wondering how your PMR journey is going. If I remember correctly you were doing a low carb fasting diet and I was wondering if that worked well for you over time. Best to you!

[ARNEMRRM]

Hey all. The ketogenic/one meal a day diet has been beneficial in my opinion. I’ve lost 43 lbs from 205 to 162, my waist has dropped from 38 in to 33. I believe it’s a good anti inflammatory measure as visceral fat clearly promotes inflammation (releases IL 6 which is elevated in our disorders anyway), and the diet approach, especially the one daily meal, also minimizes insulin release. I’m gradually improving from my PMR, now down to 8 mg of Prednisone but with transient reappearance of symptoms after each 0.5 mg taper. Physically active and happy. I feel lucky and know full well many of you have had a tough time of it, and a similar course of illness may still lie ahead for me. So fingers crossed full steam ahead.

Happy Easter everyone.