For the past month I have been tapering from 13&1/2mg pred. to 12&1/2 mg. I was at 13mg for 2 weeks and was feeling ok. Decided it was an ok time to taper by 1/2mg. By the end of the first day i was getting pain in neck and top of back. In the middle of the night I woke with excrutiating pain in that area. It is all so frustrating and depressing. It is hard to believe it can happen so fast.
Today I took 1 mg extra and feel so much better. I will take another extra 1 mg tomorrow and then go back to 13mg and see how it goes.
Good Luck to everyone trying to taper. I pray for as pain free a day as possible for all of you.
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Linny3
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Unless you’ve been there & tried it, no one can really understand what a difference that 0.5mg makes & the lower you go the more obvious it becomes.
I’m at 12.5mg at the moment & keep trying for 12mg but l can tell the difference ☹️
0.5mg can make a massive difference. As mrsN and DL say when you have been there you know it. Then there were times I dropped 1mg using dsns and was fine with the drop. You just never know which it will be...unless you are sitting on, and trying to ignore, symptoms- no matter how niggly and small.
Linny3, if I can offer any advice based on experience it’s this. Please take it very slowly. I’ve messed up twice now on my journey and each time it’s more difficult to regroup. That 0.5mg difference can be critical and it’s very very slow to reduce. Good luck.
Thank you for your replies . It is so maddening because I do take it slowly. It appears I am not able to reduce 1 mg a month no matter which way I try. So, I am now going to try for 1/2mg in a month and see how that goes.
It doesn't matter how slowly - you won't get below the dose needed AT THAT TIME to keep the inflammation cleared out. You will get lower - just not yet ...
Can you get half mg pred as my 1 mg tabs are extremely difficult to split. Reason I ask is that I have been advised by doctor to go to 5mg and 4ng on alternate days next month and just thought would it not be easier just to do 4.5 each day instead
No, they aren't economically viable really, You CAN get 2.5mg tablets in both plain and enteric coated version if you are in the UK, Then you can do 0.5mg steps down to 2mg using 2.5 plus 1s. Or you could cut 5s if they are easier - the pharmacy should have pill cutters which help.
I use uncoated 2.5mg & 1mg as l find splitting the dose fiddly & l loose the crumbly bits behind my nails 😉 I like accuracy so using the 2.5mg & 1mg suits me better.
Some Doctors think that alternating the daily dose helps Adrenal Function but l think it’s what works best for the individual.
Thank you all - such a helpful post, Linny ! I was about to drop from 13 mg to 12 mg ( just started Methotrexate too) but after reading this I shall make it 12.5mg instead ! I'm not taking any risks , especially since I have a busy couple of weeks coming up and very weak arms and shoulders anyway . I hope you get back on track soon , Linny.
I have been going down by .5 since I was below 15,and I will alternate new dose and old dose for several days before I drop to new dose. Now down to 4 and dropping by .25.... I will alternate for a week or two before going to 3.75. It seems craz,but it is what works for me.) People keep asking me why I just don’t stop taking it now that I am at such a low dose. Ummm.. because I like being on prednisone so much????)
To be honest 4mg doesn't seem like a really low dose, in terms of the impact 0.5mg can have at the stage you are at! I can't imagine what it would be like to be cut off at that. I haven't even got down to 5mg as the PMR poked me everytime I tried. If people were in the same position as most of us have been with PMR/GCA they would realise how just stopping at 4mg isn't practical for the majority of us.....at all!! Silly Billy's. 🌻
Slow, slow is so much better, don’t you just ‘love’ it when people say that!.......
My Mum was on long term/high dose Pred for Asthma, she eventually tapered down & towards the final leg she was taking them every 36hours then eventually off.
I find that 0.5mg drop can make a big difference, struggling to get below 11.0 at moment, and at10.5 had visual effects. Taken Dorsetlady's tapering advice, and stayed on 11.0 mg until no more visual effects. Been 2 weeks now, so fingers crossed.
11mg was always my sticking point for some reason!
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Down to 1 mg and flare up
Taper
Increased Prednisolone
the 2 mg misery( again)
Swelling hands and feet
