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
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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…
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?
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.
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!
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.
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.
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.
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.
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.💞
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
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