PMRGCAuk
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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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Thank you

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Thank you

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Thanks for this I am currently on 15mg and am seeing my doctor this week and I know she will be looking to reduce my dose. If I go down say to12.5 mg should i follow this plan or is this for when I get down below 10mg?

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Depends - it helps make a reduction more comfortable at any level. If you can do 15 to 12.5 in one go that is fair enough - some people can. The only way is to try and see how you get on. If it doesn't work, all you do is go back to 15mg (don't wait too long though) and then do it the slow way.

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Ok thanks I’ll see what doctor says and may show her this post. Bit nervous as I’ve felt so good on 15mg but know I can’t stay on it

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Hi

I found I didn’t need it until I got to around 7mg, but every one is different.

But when I got to 15mg (obviously started much higher -GCA not PMR) I only reduced 1mg at a time.

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Hi I saw Doctor today and she’s told me to reduce to 14mg for 2 weeks then by 1mg every two weeks until I’m down to 10mg then go for another blood test does this sound ok to you? Thanks Janet

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Hi Janet,

The 1mg reduction sounds okay, but not 100% sure of every two weeks. Many doctors recommended this approcah, but I always think every 4 weeks is better.

However you can but try, but if at the end of any 2 week period you don’t feel well, then stick on that dose for another week.

You may be perfectly okay, but unfortunately you won’t know until you try.

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Thanks I will see how it goes i thought every two weeks was a bit much but will have to try it and see. Thanks for your quick response

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You’re welcome. The first couple of reductions should be okay, but just be aware of those later. As I said you may be fine, but just be aware , and if in doubt then hold fire for a while!

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Thanks I’ll discuss with doctor it’s good to have some information to show her

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Many thanks. I am seeing GP tomorrow will discuss. Much appreciated. Regards Mary

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Thank you for all your information, I only found the web sight this week and have learned so much and don't feel so alone anymore. Thanks again. Mary

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Good,

I did it because, like you, I felt isolated at the beginning - something most of us go through.

You may be able to find a local support group, if you want to, have a look at the PMRGCAuk web site, they have a list of groups, or just write a post asking if anyone is near by. Don’t give too much info on public site but from your name I guess you still live in Bury. So just ask if there is anyone in that locality.

I find it helps so much just to talk to others who are going through same or have been through it.

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Thank you DL for all your info, much appreciated.

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