Taper step to flare time?

[somerby]

My doctor is following his guidelines of 15, 12.5, 10 and then 1mg per month steps. Today I took my first 9mg dose. So far so good. What I would like to know please is when during the month is the most likely time for a flare? I realise that we are all different and it will depend on activity levels and possibly diet but is there a time I should be particularly careful? Going from 12.5 to 10 I did feel a bit odd about a week in and then things settled down.

[DorsetLady PMRGCAuk volunteer]

This explains the difference in the timeline between a flare and the more usual steroid withdrawal [although not everyone gets that] -

healthunlocked.com/pmrgcauk...

Would just say the feeling a bit odd a week in could be either… so maybe take more notice this time around. As you get lower on Pred there is less spare sloshing around the system, so the likelihood of a flare becomes more probable. Just make sure any ‘odd’ feeling doesn’t escalate.

[PMRpro Ambassador]

There is no specific time for a flare to manifest - depends on you, your PMR, and a load of other factors, Immediate strange feeling are more likely to be steroid withdrawal and your body not liking the change and they should improve, aches that appear after several days are more likely to be inflammation that isn't being managed, especially if it worsens over time.

[Obscureclouds]

I was thinking of posting about tapering guidelines so hope you don't mind me piggy backing yours as there is some correlation. When I saw my consultant at the end of January I had been on 15mg for over 3 weeks so when in the following week I emailed him to say I had decided not to take MTX, I said I was intending to taper down to 10mg by early March. When, sometime later, I had his followup letter from the consultation there was a note at the bottom acknowledging my decision and giving me a tapering plan which said 15 mg Feb, 12.5 March, 10mg in April and 9 in June. I'm currently already on 12 mg and feeling fine so am thinking I will go down to 11 mid month and 10 in April He added a note saying that if I took MTX I could taper faster (which I know is the purpose of a sparing agent). I was expecting a lower taper after 10mg however initially it does feel like a particularly slow taper as unlike your plan he says to continue to reduce by 1 mg every two months thereafter. If I don't experience any issues of symptoms returning I'm now wondering if I could consider reducing to 9 in May as your Doctor seems happy with that in your plan I know we are all different but I would listen to my body and had thought my consultant wanted me to get down to a lower dose ( but seemingly not unless I take MTX). Strangely he repeatedly ignored my requests for further guidance when i was concerned that continuing to follow the tapering schedule he set out when I was first diagnosed would take me to 10mg in October (I became very ill dropping from 30 to 20 and made my own decision to increase to 25mg for a week and then taper more slowly) I hope your taper plan works well for you with no flare ups . I would also welcome some words of wisdom from Dorset Lady and/or PMR Pro (I was diagnosed with GCA in July but since Sept now referred to as LVV)

[PMRpro Ambassador in reply to Obscureclouds]

"He added a note saying that if I took MTX I could taper faster (which I know is the purpose of a sparing agent)"

Not necessarily at all - even in studies they found it took up to a year to see a significant difference in cumulative dose of pred. It doesn't work for anything like everyone and can take 3-6 months before patients feel any effect. I would want documantation from him backing that statement.

Just because it is going well NOW, even 1/2mg can be the difference between OK and not OK, even at present when you are likely to be well above the dose you will need longer term.

Just because a doctor suggests a taper schedule doesn't mean it will work for YOU. You have to try it, be watchful and NOT in denial that you have got to a dose that is too low for YOUR disease at THIS point in time.

[Obscureclouds in reply to PMRpro]

Thanks I appreciate what you are saying but if I tried going down to 9mg in May instead of June, and it didn’t have any ill effects and my blood test elements all remained stable, How would I know if my dose was too low for my disease? Obviously I don’t want to get into a situation of Yo-yo doses but disappointing that Somerby is advised to taper by 1mg per month when I’ve got told every 2 months even at 10 mg.

[PMRpro Ambassador in reply to Obscureclouds]

You get symptoms again - but our point is that it isn't a good idea to rush at the start, keep it slow. Some doctors think it is a race to zero - it is never a race and mostly not to zero - you are looking for the lowest effective dose. And then, as your dose gets lower - we say the lower the slower. These doctors have rarely done it themselves - 1mg a month is the fastest - any fastest is predictive of flare. And believe us - we have seen a lot of tapers, a lot of flares and a lot of tears!

[Obscureclouds in reply to PMRpro]

Thanks I was trying to say what if I didn’t get any symptoms if I dropped sooner but I’ll do as I’m told and stay on 10mg for the 2 months. I will accept that for once he’s got my best interests in mind (and not trying to make a point)

[PMRpro Ambassador in reply to Obscureclouds]

There is a paper with a tapering regimen for PMR and GCA which was actually written by a lady who is now a Prof of Rheumatology specialising in GCA and is a Trustee of the charity. This schedule kept patients at 10mg for a year. The result was that the rate of flares fell from 3 in 5 to 1 in 5. I am sure this was because there is a pause in tapering during a period where it is very easy to overreach the taper and takes away the stress of wondering whether you are OK at this new dose. A patient of Prof quick told us she still recommends this taper - because it works.

[DorsetLady PMRGCAuk volunteer in reply to Obscureclouds]

The guidelines do state following - but as we know they are only guidelines, and some doctors don’t seem to read them or follow them -

The suggested regimen is:

. Daily prednisolone 15 mg for 3 weeks

. Then 12.5mg for 3 weeks

. Then 10mg for 4–6 weeks

. Then reduction by 1 mg every 4–8 weeks or alternate

day reductions (e.g. 10/7.5mg alternate days, etc.)

The most important bit in my mind, and often the most overlooked is this-

*However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

as for how do you know your dose is too low for your disease… simple answer is usually a build up of inflammation signalled by a return of symptoms… but with LVV symptoms aren’t as obvious as with PMR and GCA so maybe a bit more difficult to know..

[Obscureclouds in reply to DorsetLady]

Thanks to you and PMRpro that much clearer for me now.

[Perigrina in reply to Obscureclouds]

I went from diagnosis and prescription of pred to zero pred in 4 months, with no other medication, not even pain killers. I set some 'rules' for myself. Each dose for a minimum of 7 days of which there had to be too good consecutive days before dropping. The shortest time on a dose was 7 days, the longest 18; most were 7-10 days. Lower than 10 was harder and lower than 7.5 harder still. I followed a very strict antiinflam diet and exercise from day 1 (and still do). I still have PMR I am not in remission but doing well.

[Obscureclouds in reply to Perigrina]

Glad to hear that has worked for you. I think my diet and exercise regime is generally very good so, apart from a period when on 30 to 20 mgs where I kept having cravings to eat not so healthy foods between meals, I’ve been ok and definitely think that helps. I think LVV may be different from PMR in terms of steroid doses needed for management but it’s always helpful to hear about the experiences of others. After my blip through following the consultants plan of dropping by 10mg at a time , as from 20mg I had also adopted a strategy of dropping by 1mg for a week or so rather doing 5mg in one hit which worked well for me. However from this point I’m going to follow the consultants new taper plan and see how it goes. Many thanks for your reply, I hope you continue keep well

[sidra1968 in reply to Obscureclouds]

I just wrote to my rheumy Friday that I decided not to take Methotrexate after researching and consulting with my GP. Boy I can't wait to see his response..lol..probably not good, but I don't care anymore, going with my gut instinct/research.

[Obscureclouds in reply to sidra1968]

Seems we’re minded. I think mine went into a bit of a sulk as he’s quite arrogant in his approach so I suspect he’s used to elder ladies just agreeing to what he says. He sent a rather unhelpful letter which did nothing to change my view. It concluded with “ I’m not going to compel you to undertake a treatment you do not wish to have” and referred me to the dose reduction he had set out as a postscript to his consultation follow up letter. I don’t think this will do anything to improve our relationship but as you say you have to go with your gut instinct/ research

[sidra1968 in reply to Obscureclouds]

well stated, couldn't agree more.

[MiniSpec in reply to Obscureclouds]

Have you thought about reducing by 1/2mg per month instead of 1mg per 2 month period? The effect is the same over the same time period, but you move down a shallower slope than by a 1mg reduction at the end of 2 monhts. Buy a pill cutter from your chemist (they cost less than a fiver) and you can easily alter your dose per day to see how you get on.

The lower you go the slower you go is the mantra to adopt, and once at 10mg consider trying to keep your reduction to less than 10% of your previous dose. So at 10mg, you would reduce by a maximum of 1mg or less (preferrably less), until you get to 5mg per day, at which point you definitely reduce at no more than 1/2 an mg in order to keep within the 10%.

That way you will hopefully reach your bottom limit (which may not be zero, but somewhere above) without any flares.

[Obscureclouds in reply to MiniSpec]

Thanks - yes I had thought following previous posts received I would stay on the 10 for the 2 months then try half a mg per month taper as I think psychologically it will make me feel better and easier to adjust if I start feeling unwell. Worth a try .

[Potter100]

This is the dosage my doctor is giving. Every month reducing by 1mg after the intial 15 (which was a miracle, all upper arm pains instantly gone), then 12.5; 10. Got as low as 2mg & then pains returned plus hip pain. He has now put me up a dose to 7mg & all but some arm pain has gone. When I see him in a month I assume I will try reducing 1mg again.

Good luck with your tapering toward ground zero, but it is not a given,