Has this taper failed: My recent taper down to 7mg... - PMRGCAuk

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Has this taper failed

Oh-my profile image
24 Replies

My recent taper down to 7mg has ended with not being as good as when I started and I am not sure how to proceed : stay put, treat as a flare or go back to previous dose.

I have been decreasing by 0.5mg of prednisolone every 3 weeks for the last few months. Since getting Covid (around the 11mg level) something changed and I was able to taper after being stuck on 11mg for many months, but also my reaction to tapering was different. Prior to Covid I suffered withdrawal days 2-8. Since getting Covid, week 1 is good, followed by a very painful week 2 (overall general soreness - I can predict it to the day it will start). Then everything settles around day 14/15 and I have good week 3 before going through the cycle again. I take paracetamol week 2.

In this last drop two things coincided with the painful week 2. I had to look after an ill toddler for a couple of days. This resulted in painful shoulders and biceps muscles of which is still have a little residual pain in my right hand side - I'm right handed. Then I caught her virus. I managed to kick it off after 2 days but it hit mid week 2 when my body was going through the adjusting to the new level. Day 14, as usual, it all settled but not as good as before. Pred now taking longer to do it's thing in the mornings and I have some joint soreness in the evening if I do anything (brisker walk, watering my plants etc.)

So no tapering yesterday, I've stayed put but wondering now if I should take action or sit tight. I know with the slow taper methods the steps can be repeated until ready. What would you advice I do here?

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Oh-my profile image
Oh-my
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24 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

I'd return to previous dose, and hope that's enough. if not, [you should know after a week] then you may need to treat as a flare -

healthunlocked.com/pmrgcauk...

Even though you are only dropping 0.5mg a time, I’d also extend the taper to cover 5-6 weeks.

plenty here -

healthunlocked.com/pmrgcauk...

Oh-my profile image
Oh-my in reply toDorsetLady

Thank you DorsetLady.

I’ll follow your advice and keep my fingers crossed I don’t need to go higher. Every drop is a painful experience.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toOh-my

You are in the region where adrenals need to think about getting going as well…which for some can make the tapering even more difficult- so the mantra really is as slow and steady as you can. Less ‘spare’ Pred affects both adrenals and disease… and as we say- you cannot rush either…

Oh-my profile image
Oh-my in reply toDorsetLady

I did wonder about adrenals. During my bad week 2 I was suffering from lots of hot flushes and dizziness until the Pred kicked in. I don’t have that happening now. Maybe smaller drops in the future?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toOh-my

Maybe…but if you elongate the actual taper - mine has 5 weeks, 7 weeks and [if required] a 14 week version! But you can extend the one you are already using by repeating each stage/week as many times as you like.

Oh-my profile image
Oh-my in reply toDorsetLady

Thank you. If only it was all so much simpler. I try and keep a diary to see how it goes. Then wish my notes were more descriptive.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toOh-my

Don’t think anyone ever promised us a simple or easy life did they… but it would be nice at times… 🤣😂

PMRpro profile image
PMRproAmbassador

At the very least I'd not taper any further but would probably go back to the previous dose in the hope you won't need the flare protocol.

Since you are already at 1/2mg steps, I'd make the intervals much longer, 3 weeks really isn't long for your body to adjust to these higher percentage changes in dose. There is no hurry - and it isn't slow when it works and you don't feel rough or have to go backwards and then repeat the agony!

Oh-my profile image
Oh-my

Wise words. Thank you PMpro.

I’ve never managed a whole 1mg step. It did make me wonder if I should change my tapering strategy from now on.

PMRpro profile image
PMRproAmbassador in reply toOh-my

Do you use a slowed taper? They do make a difference to your body tolerating the change in dose. I used to find my body rebelled for the first 3 single days of the new dose and then decided maybe it wasn't so bad. After a couple more single days, I felt better on new dose days than old dose days! And with a big gaps between on that new dose, you have plenty of time feeling human between episodes.

Oh-my profile image
Oh-my in reply toPMRpro

Not a present. I have tried it on the higher doses. I still had all the uncomfortable days. Just spread out with good respite days in between. I switched back to a single drop to get the pain out of the way in one go. I found it easier for planning ahead and also judging if I have over dropped. My body reacts to any slight change - I have tried 0.25mg before now - and so I try to minimise the ups and downs as much as possible. It seems to be something I go through whatever I try. And as long as I come out the other side good I accept it. I am worrying about the waking up my adrenal glands though so I was maybe going to give it a go again when I got to around 5mg if it helps there.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toOh-my

My body reacts to any slight change

Then a slower taper is designed for you…and as said will help adrenals -so why wait until you get to 5mg?

PMRpro profile image
PMRproAmbassador in reply toOh-my

That's fair enough - some people are that sensitive even though some doctors won't believe! I don't THINK a slowed taper will help at low doses if it doesn't help now.

Oh-my profile image
Oh-my in reply toPMRpro

My GP has left me to my own devises so I have been very grateful for all the advice here.

However, she did say one useful thing right at the start when I was struggling lowering from 15mg. She suggested I try 0.5mg drops and see if it settles (withdrawal) by 2 weeks which seems to have worked more or less for me, so I think she has met others like me.

PMRpro profile image
PMRproAmbassador in reply toOh-my

I certainly have "met" others who struggled for a couple of weeks with steroid withdrawal - a week is not unusual.

Grammy80 profile image
Grammy80

I'm so glad you came on and asked....the gals have told you how much you are demanding of your body.....winning is feeling better.....NOT getting to zero, so folks never do and I know I will be one. Take it slowly and be well.💞

Oh-my profile image
Oh-my in reply toGrammy80

Thank you Grammy80. I shall be the tortoise!

Grammy80 profile image
Grammy80 in reply toOh-my

The tortoise rules!🏆💞

WilfDog profile image
WilfDog

Great advice from DorsetLady andvPMRpro. Slow and steady is the key...Good luck and stay well xx

Oh-my profile image
Oh-my in reply toWilfDog

Thank you.

So lucky to have all the good advice - stress from not knowing what best to do is no fun.

Wizards profile image
Wizards

I would serious try the dead slow tapper. You can find it on the site.It's slow and easy and it's easy to double up weeks.

I used this method all through my journey with time in-between.

I was fortunate for it never failed me.

Good luck

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toWizards

Have linked in my reply…

FeiandLing profile image
FeiandLing

just wondered if you have tried this system of decreasing your dosage given to me recently by a rheumatologist specialist. So for instance if you are taking 7 mg daily you follow the system like this:-

Mon Tue. Wed. Thu. Fri. Sat Sun

7mg. 7. 6. 7. 7. 6. 7

7. 6 7. 6. 7. 6. 7

6 7. 6. 6 7. 6. 6

6. 6. 6. 6. 6. 6. 6

6. 6. 5. 6. 6. 5. 6

6. 5 6. 5. 6. 5. 6

6. 5. 5. 6. 5. 5. 6

5. 5. 5. 5. 5. 5. 5

and so on

I hope this makes sense! It has helped me so far. Good luck

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toFeiandLing

Good that works for you, but if I’m reading it correctly it’s quicker than Oh-my is using at the moment…and what we have suggested. 😊

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