More advice please lovely ladies! I am seeing my GP tomorrow for the first time since starting 15 mg Pred. He is bound to talk about decreasing it. What do I say to him and what is the best way to taper at this dose if he wants to drop to 12:5 mg.
I have read all your wonderful advice on tapering when you get down to 10mg , but is it too much to use the dead slow and stop one with 15mg & 12.5 mg. or is this too big a gap.
Thank you so much xxx
PS I realise I won’t be doing this yet —- but I need to be informed in order to discuss m plans with him!!!
You won’t know until you try.
Some people can taper from 15mg to 12.5mg and then to 10mg without too much problem - and it is a “recognised” drop. However it is more than the mantra we quote on here ‘ - “not more than 10% of your current dose”, and many do struggle.
I would be inclined to ask for 1mg tablets, so that you have the option of smaller tapers. And don’t reduce any quicker than every 3-4 weeks - if you taper every 2 weeks as some suggest you cannot be 100% sure current dose is controlling symptoms before you reduce again - it can take that long for your body to react to the lower dose.
By all means use a slow taper as well, although I didn’t find it necessary until I got to singles figures - it really depends how sensitive you are to change in dose.
Thank you again dear DL. I’ll ask for 1 mg tabs. Also if he wants me to start the taper after three weeks on the initial 13mg. Is that OK? Or should I wait for four weeks?
I am back to my old normal self at the moment after 13 days on Pred. The only thing that hasn’t changed is the fatigue at 2:00pm where I absolutely have to go to bed for an hour or more and sleep. This is no problem for me as I am a 77 year old housewife, don’t work and play bridge in the evenings!
At least 4 weeks on starting dose - but 6 is much better if you can stretch it to that. Then you are sure all existing inflammation pre steroids is mopped up - and you start each day with a clean sheet - so to speak!
2pm fatigue is quite normal - and as you say no problem for you- so just just rest so that you can enjoy your evenings!
My mum was an avid bridge player - in fact any card game - we used to play whist a lot when I was a kid. Hubby and I used to play whist and cribbage as well - but must admit I’ve never tried Bridge.
Thank you again DL. It is so so wonderful to have this forum with amazing guidance from you experts. Xxxxxx
If you use the DSNS approach starting at 4 days between the first 2 new dose days you will still reduce the amount you are aiming for in a month, just it will be gentler. It was developed for using with 2.5mg doses as then the enteric coated pred wasn't available in 1mg doses, it is now.
However - dropping from 15 to 12.5mg and then 10mg works for a majority of patients - if that first drop doesn't work you can immediately go back and do 1mg at a time. As DL says, you won't know until you try!
I'd hold out for 4 weeks on the starting dose - you may FEEL good but there may be some inflammation still lurking.
Thank you so so much again PMRpro. You are unfailingly patient and generous with your expertise and knowledge and I can’t thank you enough. Ill definitely hold out for four weeks then.
We have just had to move to a new GP after 40 years —- it was boundary regulations—— he seems very nice but I’ve no idea how easy it will be to agree a plan with him! I guess the I mg pills will be my saviour!!! 🤪
Thank you again xxx
Great advice as ever from DL and Pro.
I would only add that when you decide which way you feel most confident doing the taper , especially at the beginning when we are all understandably a little unconfident, that you take in a print out off the taper from the forum to show the Doctor .
Then explain that you want the 1 mg meds as well so you can do the taper properly , and would like to follow a taper that is recommended by other sufferers . If you sound polite and informed good Doctor's agree , especially when you point out that you wish to do it this way as you would prefer to use a successful method which could prevent a flare in the future and force you to have to increase the dose again and therefore mean you were on steroids for longer than necessary.
Logic will out often with your Doctor's ( not always , but often ) .
Great advice dear B as always, thank you again. I shall do that tomorrow when I see him. I shall also show him your reply as it is very erudite and sensible! Then I’ll ask him for an extra week on 15 mg and some 1 mgs! Wish me luck! 🤣🤣🤣
Whether you are on enteric coated or plain pred it is possible to get 2.5mg tablets which, together with 1mg tablets, makes reductions simpler.
Thanks again PRO. I have just been to see my new GP and he was really lovely—- happy to go along with all the suggestions and advice given to me.
He has given me 2.5 tablets for the moment along with the 5mgs and will give me 1 mg whenever I want them. I am seeing him in four weeks time but for the next two weeks will stick to my 15 mg!
I dropped from 15mg down to 10mg in four steps....15, 13.75, 12.5, 11.25, 10, by cutting 5mg pred tablets into 4 with a pill cutter because my rheumy at the time refused to give me 1mg tablets. I stayed at each dose for 1 month. This taper worked fine with no flares.
Below 10 I’ve experienced some trouble tapering and am currently holding steady at 9.5mg for 2 months now. I have attempted to go down by .5mg each drop below 10mg.
Good luck with your appointment.
Thanks so much PMRCanada! What a stubborn Rheumy not to listen to you. They are not Gods!! I don’t know how you managed to cut those tiny pills into four—- amazing—- hope I have better luck talking my new GP around!
Thank you so much for sharing your experience with me and every good wish to you too xxx
Oh yes, my rheumy was a pretentious woman who insisted on all her patients following the same textbook taper (which caused me to flare). She was rude, impatient, contradicted herself, slammed other specialists I was seeing and accused me of lying about her upping my pred after a flare. I challenged her at all 3 appointments I attended and then decided to not go back. She called me personally to apologize....too little, too late.
Now I am overseen by my lovely compassionate, patient GP.
Physicians should work with us, collaborate, and listen to our symptoms, not just apply science.
Too true. My husband has had Parkinson’s for 10 years and all the specialists want to do is raise his meds , which I won’t allow after much, much research and so far he ploughs on OK bless him!
I really think we have to look after ourselves to the best of our ability if we are able and be as informed as possible. Thank heavens for the internet , we would be lost without it.
Indeed, we must advocate for our health!
I think my former rheumy was used to elderly patients who did whatever she said, as their generation revered doctors and were compliant. She did not like that I was informed, challenged her authority, and her medical recommendations. Seeing her caused me anxiety, stress, and was exhausting....none of which are good for PMR!
Good for you being informed and standing your ground. In addition to the internet, this forum has been invaluable for me.
I did the same as PMRCanada and it’s worked so far. I take my time resisting the occasional mad temptation to reduce in a rush because of being fed up with the side effects!! 😀
I tapered 20 to 15 to 12.5 to 10 on doctors orders . Too fast for me! Back to 15 to 13.5 to 12 to 11.to 10. Then 0.5 drops to 7. Stuck there nearly a year.
Good luck! Little steps..
It is really lovely to see that you are feeling well and cheerful. Treat this like precious cargo. Luxuriate in it for 4 weeks at least. Good luck!
You are so lovely SJ! Thank you so much for your good wishes.
I know the hard work is yet to come, and I thank heavens for the support and advice from all of you wonderful ladies I xxxx
I dropped 15 to 12.5. and it was ok
Thanks so much Daffodilia! That is really good to know. It’s interesting that each journey is so different. Every good wish xxx
If you decide to use the DSNS taper starting at one day new dose, 4 days old dose, then it takes 26 days until you are fully on the 'new' dose. So when talking to a doctor, it's easy enough to just say "I'll reduce to the next dose this month" - they don't really need to know the process of the reduction.
I'm only saying this in case your new doctor seems reluctant to consider something that they're not familiar with! I printed out the DSNS taper and showed it to my GP, who thought it was a good idea. My Rheumatologist also advises it!
If you need one, you can buy a pill cutter from your Pharmacy.
Best wishes.
Me: PMR since May 2016 - a few flares along the way. Now tapering DSNS to 5.5mg.
Taper 0.5 mg by alternating dose
Tapered from 20 to 3.5 mg Pred 1 year
Pred tapering starts tomorrow
Tapering-Leflunomide and low dose Pred.
Best timing for pred dose
