PMRGCAuk

DL’s simple taper

Hi,

I seem to have included this in a response a few times this week, so thought if I put it out as a new post it might be easier to locate. -

1st week - Sun & Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

2nd week - Sun, Tues & Thurs new dose -Mon, Wed, Fri, Sat old dose

3rd week - Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose -Mon, Fri old dose

5th week - every day new dose

Note:

I usually found once I completed week 5, I was able to go straight into the next taper. But you can always stay an extra week or so, it entirely up to you. On a few occasions I stayed a bit longer - if I wasn’t 100% sure, or if I knew something a bit stressful was on the horizon (holidays, Xmas, visitors, etc).

As I’m always saying it’s only a plan, if you need to alter it, say to repeat a week then do so.

It’s easy enough to draw out on a piece of paper, but I do have it as an excel spreadsheet which updates the doses, so if anyone wants a copy please send email address to me on a PRIVATE MESSAGE - not the open forum.

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Many thanks for this DL. People want this most days.

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Thank you, always useful to have!

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Thank you DL , this one is easier to learn for numerically challenged people like me😶

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Another thing we have in common Gaijin 🙃 !

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Thank you so much DL. Think I'll give this a try when I'm ready to taper. Xxx

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Thank you Dorset Lady, going to try this plan for my tapering. My Rheumatologist wants me to try to reduce by 1mg each six weeks so this looks ideal for me. Suffering at the moment as just had a kidney stone and now got a flare of IBS so been advised not to start reduction until 1/11/17 from 20mg to 19mg. Thanks for reposting your plan. xxx

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No, don’t start reducing until you really have got over both problems. Good luck when you do.

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Thanks! I have had success with your plan and am at my lowest dose ever. 11.5 hurrah!!

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👍😊😄

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I've been following your reduction plan for my last two reductions and found it very simple to follow. Thank you. 8.5 is the next hurdle and one I understand could be critical because of waking up the sleeping beauties - aka adrenals.

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Hi can I just ask what can of drops mg were you making at the high, middle and low end?

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Hi Oliver,

I did this for someone else who asked same question. I’m not suggesting it works for everyone - it’s an agreement between you and your doctor and your circumstances, but it may give you an idea. For info I didn’t start using the tapering plan above routinely until I got down to about lower doses (well low for me that is!).

Start dose

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

14mg - 3 weeks

13mg - 4 weeks (1st 4 days @ 13.5mg)

12mg - 10 weeks (1st 4 days @ 12.5mg)

20mg - 2 weeks ***

17.5mg - 2 weeks***

15mg - 2 weeks ***

17.5mg - 4 weeks***

25mg - 3 weeks ***

20mg - 4 weeks (slow taper)

15mg - 6 weeks (slow taper) - changed surgeries

14mg - 2 weeks

13mg - 9 weeks (Xmas)

12mg - 10 weeks (slow taper from now on)

10mg - 3 weeks

9mg - 6 weeks

8mg - 6 weeks

7mg - 6 weeks

6.5mg - 6 weeks

6mg - 12 weeks (visit to NZ)

5.5mg - 6 weeks

5mg - 8 weeks

4.5mg - 6 weeks

4mg - 10 weeks (unexplained neck/back pain)

3.5mg - 5 weeks

3mg - 9 weeks

2.5mg - 6 weeks

2mg - 5 weeks

1.5mg - 6 weeks

1mg - 4 weeks

0.5mg - 16 weeks (couple of false starts, plus holiday)

Zero

*** Raised ESR, no flare, due to hubby being very ill, liver cancer diagnosed and subsequently dying.

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Thanks a million.

I have pulmonary fibrosis and was put on Deltacortril while cellcept kicking in.

Plan was to download down from 30 to 7.5 in 8 weeks.

Gp is certain I have Temporal Arthritis and is against the pulmonologist fast approach as is pharmacy.

Had a very bad time after going from 30 to 20

SOB very bad could hardly walk, lungs were under severe pressure

Gp/pharmacy advice went

17.5 10 days

Now 15 10 days

Was thinking of reducing by the ones when I get to 12.5

So your post is a god send.

I am having weekly bloods for cellcept tolerance and ESR

its cold here in southern ireland but no snow.

Best wishes

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Glad if it helps. But you obviously have other issues not just GCA as I did.

In NZ at present with daughter so different weather to yours - been in high 20s/low 30s since been here. Bit lower tomorrow, but not in your league.

Take care.

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Picked up the 1mg prednisalone from pharmacy ready for next taper, next week.

Enjoy your holiday and the warm weather.

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Really helpful, thank you. Just about to start reducing from 10mg having stayed for six weeks at that level, Christmas pretty exhausting so took its toll!

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Hi DL,

If the PMR is going to stay in the body for an allocated time of its choosing, then how do I know when to start tapering? I’m on 10.5 mg, having started at 15 last October, so I have come down. But I’m feeling ok at this level, but do I still continue to taper every 4 weeks or so?

Thanks, Sue

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Hi Sue,

Your initial dose of 15mg was higher than you would need on a day to day basis - but hopefully enough to get the accumulated inflammation well under control.

The aim then is to reduce to find the dose you actually need; that depends on a couple of things - how active your PMR actually is, and what actions you take to manage your illness. Unfortunately nobody can tell you that level, so you continue to taper much as you have already until you reach that point. Doing it on monthly basis is good - it gives you chance to know that each level is enough before you reduce again.

Most people find that reducing below 10mg becomes more difficult - you don’t have the excess of Pred in your body anymore as you get closer to YOUR dose and each reduction becomes bigger in percentage terms. That’s another reason why some try reducing by 0.5mg at a time. But so long as you feel okay then continue as you are.

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That was so useful to know, thank you. I understand the tapering idea much better. You are a wizard and thank you for being there. Sue.

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Just been there, that’s all!

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