Help please;Pred tapering plan: I know the answer... - PMRGCAuk

PMRGCAuk

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Help please;Pred tapering plan

Hidden
Hidden

I know the answer to this has been posted, but I just can't find the post I read a few weeks back. Sorry to ask for it to be repeated.

Started 15mg pred in July, then to 12.5 after 2 weeks, then 10 after another 2 weeks and was due to drop to 7.5 and remain on that for a month before dropping by 1mg a month. Symptoms started to return, albeit very mild, at 10mg drop and over 10 days were getting worse. So on day 11, I increased to 12.5 and guess what, everything improved. No pain, just fatigue. So I've concluded, as suggested on forum, that tapering plan was too fast. GP has put pred on repeat monthly repeat of 5mg and 2.5mg pred. So I can mess with dose that manages symptoms.

My question is: what's the plan now? I'm thinking 12.5 for a month and towards the end maybe alternating 12.5 and 10 for a week or so before trying 10 for a month. Happy to be the tortoise rather than the hare if it works!

I'm so lucky to have found this forum and experienced the valuable support and information right at the start of treatment. I have a better idea what to expect and know when somethings not right, regardless of the medic's view. Thank you.

19 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Personally I would ask for 1mg to be put on repeat prescription, you will need them more than the 2.5mg in future.

As for now, you might find the drop from 12.5 to 10mg too much - many do! If you can cut the 2.5mg in half (so long as they are plain uncoated) that might be easier for you.

Certainly once you get to 10mg you only want to be reducing by 1mg at a time and preferably on a monthly basis - assuming no return of symptoms etc.

This taper may help as well -

healthunlocked.com/pmrgcauk...

You are only in early days as yet, so the slower the better for your illness. No rush, it’s going to be around for some time!

Hidden
Hidden in reply to DorsetLady

Thanks DL, I've copied that for future ref. I'll check out 1mg prescription at next renewal; that makes sense. I'm bearing in mind your advice about the size of the drop. Thank you so much.

PMRpro
PMRproAmbassador

Ask the GP for 1mg tablets too - I'm assuming if you have 2.5mg tablets you have enteric coated? You will NEED 1mg whatever else you need. Enteric coated pred also comes as 1mg tablets now.

medicines.org.uk/emc/produc...

DL has given you her slow taper - this is the link to mine which also seems to work OK with 2.5mg reductions for most people if they start with a long gap between new dose days:

healthunlocked.com/pmrgcauk...

Hidden
Hidden in reply to PMRpro

Doh! No, I don't think mine are enteric coated. There's no mention on the leaflet. I'm going to check with pharmacist next week. It's Bank Hol here and regular pharmacist is back on Tues or Wed. If it's funding based, I'm not hopeful they'd be prescribed, so may have to be inventive with the 2.5.

I've also copied your plan; thank you so much. It's slow, slow, slow and slow again. I'm resigned to that and I'm not going down the all change every 2 weeks route as Dr wants. If it's causing problems this early, things would only get worse.

piglette
piglette in reply to Hidden

The enteric coated are red, brown and yellow for different sizes, non coated ones are white and you can cut them in half which you cannot do with the costed version.

Hidden
Hidden in reply to piglette

Whoooooho! Thanks piglette. I've got yellow and white ones, so they are enteric.

piglette
piglette in reply to Hidden

Sounds like the white ones are non coated. What does it say on the box?

Hidden
Hidden in reply to piglette

The white one's are 5mg. The yellow ones are 2.5mg.

PMRpro
PMRproAmbassador in reply to Hidden

The yellow 2.5mg pred ones are unusual - does someone make uncoated 2.5mg ones? Does this describe them?

medicines.org.uk/emc/produc...

PMRpro
PMRproAmbassador in reply to Hidden

White ones aren't. 5mg e/c are red, 2.5mg e/c are brown and 1mg e/c are yellow.

Hidden
Hidden in reply to PMRpro

I know my head's scrambled, but I've just been to check!

They're made by Atavis. The 5mg are white with a central indented line through them. The 2.5mg are yellow with a central indented line. Presumably that makes both easier to cut in half.

PMRpro
PMRproAmbassador in reply to Hidden

Yes - the link I gave above is for Actavis prednisolone. Question answered! But they aren't e/c.

And yes - the score mark is to make it easier to break them.

piglette
piglette in reply to Hidden

You have definitely got uncoated as they have a score mark on them for cutting in half if you need to.

Hidden
Hidden in reply to piglette

Result!! We got there in the end. Thank you both😀

HeronNS
HeronNS in reply to Hidden

This is exactly the point where my initial doctor-prescribed taper began to give me trouble. But in my case I was only dropping by 1 mg at a time, albeit weekly, after 5 weeks at 15 to start. I noticed increasing pain at 9 mg and went back to 10 mg for a couple or three weeks. Then I started using the dead slow taper method, at first the full mg drop, later .5 mg. I showed the plan to my doctor and she approved it. It allowed me to get as low as 3 mg at the end of my first year of treatment, although I have been hanging around 2.5 - 1.5 most of the past two years. it's a dose which still seems to be necessary for me, but comes with barely a side effect.

I think the problem is some doctors think we can get to our lowest best dose just like that, but in fact steroid withdrawal plays a huge role, and also we don't know what our lowest best dose is going to be, and can gallop right past it if our steps down are too large. And because we are all different, and we may have very different levels of pred absorption or speed of metabolism there's simply no way one size fits all, or even some. Each of us is unique. It must drive doctors nuts!

Hidden
Hidden in reply to HeronNS

Thanks Heron. I really appreciate having the benefit of others' experiences. It gives everything perspective and context; much to relate to and sound reasons for ignoring one size fits all.

Telian
Telian in reply to Hidden

I had to reduce by only 1mg at a time from 12.5mg due to bad withdrawals and for at least 6 weeks at a time, when got to 5mg it had to be .5mg for at least 4 months - it's taking longer and longer but I'm getting there. I never understand why but accept that's me. So it's what suits you just listen to your body. ATB.

Hidden
Hidden in reply to Telian

Thanks Telian. It's the most difficult part of the illness; the unpredictability and no exact 'best' level. At least I've lowered my expectations early!

Telian
Telian in reply to Hidden

You have, I didn't find this site until 3+ years after diagnosis. ATB.

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