When one tapers...how asymtomatic are we supposed to be? Are we supposed to feel 100% or like 80% well?
Re: Taper: When one tapers...how asymtomatic are we... - PMRGCAuk
Re: Taper
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ConventCassie
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Ahhh Haaaa, trick question! You can't fool me!
Answer: when you taper you feel WORSE! Period.
At least I did.
I suffer terribly from horrid steroid side effects and wicked steroid withdrawal symptoms! So it's a lose/lose for me.... until this past week, where I discovered there may just be a light at this end of this freakin tunnel! 🤞🏻
ConventCassie in reply to
I tried the DSNS and it sure minimises the symptoms. At least it gives you a few days off. Hope your light shines brightly 
in reply to ConventCassie
Thanks! Good luck to you as well...I'm sure you'll get it sussed! ...especially with the experts here on this site!
in reply to ConventCassie
I can't wait to get there CoventCassie! The rheumy's plan is to get me down to 20mg and then DSNS. I gave been on high doses for 4 months now, and struggles from side effects and withdrawals so I need to get to 20 and then see what's what. Thank you!
What is DSNS?
Dead Slow Nearly Stop
(I Day new dose 5 or 6 days old dose. Then 2 days new dose others - old dose etc.)
That's a bit faster than dead slow. I do one day new dose then six old dose, then one new dose, five old dose, one new dose, four old dose, and so on until you get to one day old dose, one day new dose, then one day old dose, two days new dose, one day old dose, three days new dose, and so forth until you've gone a week on the new dose. Then you can stay at the new dose for a little longer, or start a new taper. I tend to be super cautious now that I'm at a very low dose.
I’m so sorry I screwed up describing your system. That is your photo I saved, right? I did it correctly, but I’m bad at describing it. PMR Pro patiently told me it was a 30 day thing and suggested colored markers. Then of course I told my Rheumy I was (finally - after 38 days) at 4.5 and she must have thought I was just starting 4.5. Communication is very important here I can see. I must get better at it. I may take your advice & go the full 6 days next time at the beginning. I think it only changes the process to 42 days total. Again sorry.
Not my photo, but I'm pleased you've actually been doing it right. it is a bit confusing, which is why I write every single dose in my page a month calendar booklet, using a pencil, and also why some people are very happy to have an app for their smartphone! I used the four day turnaround when starting. Later I went with six days. i also started tapering by .5 and what I'd do is in the middle, where you have two days old dose twice the second time I'd drop a further .5 on the second day, and do the second half of the taper .5 lower for both old dose and new dose, thus getting a full 1 mg drop for the taper without ever dropping more than .5 on a given day. Later still, and to this day, I only drop .5 for the full taper.
Now I’m really confused. Are you saying, for example, you would taper from 6 to 5 and never do less than 1/2 a dose? It would NOT be a 6 to 5 1/2q Taper? I’m going to need more markers & stuff.
What is the App? I use my phone alarms for am & pm doses & have a “backup” alarms on all.
You know how the dead slow version has you tapering by dropping one mg, then returning to the old dose for decreasing numbers of days between new dose, until eventually you are taking only the new dose? So as an example, if going from six to five, I would follow the dead slow routine by doing 6 to 5.5 to the middle of the taper. Then right in the middle I would two days take the old dose (6), as per the schedule, then one day the new dose, then the next day instead of the second consecutive new dose (5.5) I would take 5. The next day, which would have been 6 in the standard taper would then become 5.5. So I now have a new "old" dose of 5.5 and a new "new" dose of 5. I would then proceed to the point where I was completely at 5, never taking the 6 dose again, that would now be history. This was very successful for me probably from about 7 mg to 3 mg. At that point I thought I should slow things down even more, so I now stay with a .5 taper, and don't drop the second .5 in the middle. Someday I will copy the standard taper schedule and alter it to show my modified version as a picture is worth a thousand words....
Yes. A picture is worth a Thousand words. So...you made this up?
No, I just tweaked PMRpro's dead slow nearly stop taper. It was easier for me because the dosage change was much smaller.
I screwed it up. See Heron’s post. I actually tapered right, but it’s like a 30 day thing. I bought a 30 day pill container & am loving it! Write out a calendar & use coloured markers. Apparently I suck at describing it.
With acknowledgement to PMRpro, here is my modified even slower version using a taper from 6 to 5 as an example:
1 day new dose 5.5mg, 6 days old dose 6mg
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day new dose 5.5mg
1 day new "new" dose 5 mg,
1 day new "old" dose 5.5mg, 2 days new dose (5mg)
1 day old dose (5.5), 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose (5.5), 6 days new dose (5mg)
Well that makes sense if you’re going for a whole 1 mg taper. You made that work nicely. Do you think 5 & 1 is ok for the lower numbers or would or will you be doing the full 7 days. (One day new 6 days old?)
I did the four day turnaround when I was at the higher doses, like 9, 8. When I got to 7 was when I started doing this middle of the taper drop. I think that's when I started the full length taper as well. I thought 7 would be a sticking place for me, and it was, in part because I got the dreaded "deathly fatigue". I'd started out with the idea that I'd only taper .5, but felt well enough in the middle to drop a further .5. So I discovered this sort of by accident. It worked well for me, so I did it again a few times until I got to 3, and then I really did just reduce by .5 mg for the entire six weeks. I had a bit of a flare last summer, and looking back at my calendar things were a mess most of the summer until I got a grip on it all. I am now doing the dead slow taper from 3 to 2.5. In fact have completed the taper and just hanging out at 2.5 a little longer before proceeding further, given that I'm getting near flare territory again and do not want a rerun of last summer!
I’m worn out playing with all these numbers! what about the App you referred to?
I think it's a pinned post here. I prefer pencil and eraser, nor do I own a smart phone so can't help with the app I'm afraid.
Look at the 'Topics' on the right of this page and click on 'Tapering Steroids'. Scroll down a little way and you'll see 'Steroid Taper Web Application'. This will give you many different tapering schedules, including 3 versions of the Dead Slow Nearly Stop taper.
daworm in reply to
this is probably what I'm going through right now, as in my post today...I feel its more pred withdrawal than PMR but how long should I give the new dose a chance?? Some ugly days thats for sure...
No more than a week, less if pain gets worse. Some people say it takes even longer for a new dose to settle, but I find the dead slow taper kind of deals with that issue.
I’m referring to the end of 3 weeks (or whatever) and we go to begin the ‘next’ taper.
in reply to ConventCassie
So you've been on your current dose for 3 weeks? And how much better do you feel? 60%, 80%, 100%? None at all? I'll let the experts reply but maybe if you could provide more details as well....
ConventCassie in reply to
No. My dr put me up 1/2 mg and I know not why. So in 3 weeks I’ll go back down to 4.5 again (DSNS - so at least 38 days then). Just curious if I should feel “cured” before the taper starts or at like 70% which was suggested below & I like. No issue at the moment as I felt fine on 4.5.
It's hard to put a percentage to it. Some get worse for a few days with withdrawal then pick up. Others get to two weeks okay and then flare if dose too small. Yet others get a mixture.
You are looking for the pain and stiffness to reduce by an amount you feel ok with. I live my life at 7 out of 10 due to a range of issues and can cope with that. Some might feel life's impossible at what I would consider a 5 or that life is bearable at my 10. You have to find your own level where you at least feel like your normal. If 1 is pain and fatigue free and 10 is totally unbearable pain and draining fatigue that feels like you are about to crash, where do you think you are?
Looking at your second message it looks like you have dropped too much. I would go up by 0.5mg or to last dose you felt ok at. I certainly wouldn't reduce until I felt stabilised for 4 weeks (i say that but I find it hard to decide when to "give in" and go up).
ConventCassie in reply to
I went from 4.5 (felt fine), but Rhumy wants 5 so to 5. Fine is stiffness at a 1. No pain. But, at 7 I felt pre- getting sick. Then I had a bad fall. Recovered & Got down to 3 & all was well but then at 2 (was not going slowly enough) got the shoulders, arms, wrists & hands involved. I’m content at 5, but was also content at 4.5 recently. I’m just looking for a percentage on “content”.
Question first: are you saying you were fine at 4.5 but your rheumatologist wanted you to go UP to 5?
It is totally individual. The ideal is that you feel as well at the end of each taper as you did when you had your initial dose which made you feel as well as you were going to get. That shouldn't be less than 70% and for some it is better than that. In my case this wouldn't be possible because pred, 15 mg, cured ALL my aches and pains, including issues connected to osteoarthritis. Of course those came back. My personal rule of thumb is that at the end of every dead slow taper I have to feel as well as I did when starting the taper. Sometimes I even feel better. I do allow for little niggles, but there is always some time during the day when I am free of even those. I think I live on a knife edge between just enough and almost too little. I wait between tapers until I feel each day is good. If I start to feel more pain again I have been known to go back to the previous dose and tried again a week or so later. This is entirely apart from a flare I had last year which was caused by my hoping I was in true remission and my doctor encouraging me to use up my tablets, stop and see what happened. We both found out, and it wasn't good! Apart from that episode since starting dead slow taper at 10 mg I've plugged away pretty steadily. But it took me a year to get from 15 to 4 and then another year to get to 1.5, where I had my flame out, and it's getting close to another year and I'm at 2.5 and holding for a few more days to make sure it's okay before attempting 2.
During each taper there is often a day or two when I don't feel I'm doing well. This is a key moment. I'll try another day, and nearly always things turn around and improve. If they don't, that's the time to call a halt to that particular attempt at a taper and wait a couple of weeks before trying again. I call these repeated attempts "poking the dragon" and eventually the dragon gives up. So far, anyway. I don't think I'm at my lowest best dose yet. On the other hand, after last year's experience I'm not ready to say I'm heading all the way to zero just yet either.
Sorry, this got so long. I hope you find a comfortable way forward with your tapering.
This is most helpful. I think the 70% is a good gage & I like your analogy to ‘Polk the dragon’.
in reply to ConventCassie
You sound like you have been aware when taper works or doesn't and have more experience than me! I am a big believer in gut feelings and by just asking the question it sounds like you are not at the dose your body might need. Do you feel like you need more/less? I remember reading a message from someone who had really struggled at say 7mg but dropped despite feeling rough and the next lower dose felt much better. Can't remember who and it was in the middle of last year. Good luck!!
My doctor says “be happy with 70%”. 😖🤦♀️!!!
in reply to MaryA_
I am ok with that given comorbidities I have but would s/he be if it were them!!
ConventCassie in reply to
I know! I’ve emailed & said there is no scale of 1-10. Let’s go 1-20 on pain!
I spent two years of horrible Christmases. Not recognizing or familiar with the word “flare” I let my Primary Care call my condition Facit Joint DJD or something. Of course it was the joints!!! I should have contacted the Rheumy for more pred, but I just suffered. Glad I found this group. And that is past. (Two for the Dragon).
My friends got used to my answer when I reply to their "how are you?" greeting. They get 80% or 75 or 30 or whatever.
Hi ConventCassie
I hope you get things sorted and soon. I am not an expert but wanted to say I really like your description of ‘poking the dragon’. It well describes our travels along the PMR/GCA tapering road👏. I wish you well xx💐
PMRproAmbassador
Whatever level of pain/discomfort you achieved with your starting dose is your main guide. That is what you are aiming for as you reduce and to find the lowest dose that provides the same level. That's why you need to stay at a new dose for a couple of weeks at least to be sure you are still OK. reduce too fast/too often and you suddenly realise you have symptoms again - but where did it go wrong? The expectation at the start is of a speedy 70% improvement in symptoms - but then they may continue to improve for some time. I was a good 70% better in 6 hours with 15mg but over the following 5-6 months the bursitis in hips and hands/feet also slowly faded - until eventually as far as pain is concerned I was at 95% or so. Now I rarely have PMR pain as such - but myofascial pain syndrome has a kick every so often. And if you have other things - like osteoarthritis that may reappear - but probably isn't a good reason to stay at a slightly higher dose of pred...
It is complicated by the fact that when reducing you MAY develop something called steroid withdrawal - which is generally the same sort of symptoms as the disorder you are taking the pred to relieve. How do you know which is which? Eventually you learn to recognise it but you can help to avoid it by keeping reductions small - it is your body objecting to the removal of the dose it is used to - and not reducing too often.
Steroid withdrawal generally happens as soon as your body didn't get the dose it was expecting and then improves over the following 1 to 2 weeks for most people. If you reduce again in that time you won't know if it is improving, you'll just feel rubbish all the time! When it is a flare beginning then usually you will be OK for some times - maybe days, maybe longer, but then niggles start to appear and get worse rather than better over time. That's the sign you are too low a dose for the current activity of the cause of the PMR and need to think of taking a bit more.
Thanks. As always most helpful.
I found this post THE most helpful of all I've read PMRpro, so thank you. I'm in a similar position to ConventCassie in that I don't recognise the difference between Pred withdrawal and Flares. Being desperate to get off Pred doesn't really help either. I have taken advice from this site before and slowed down my ambition to get off the Steroids, and so far I'm at about 60% on 3mgs. (Initial dose 20 and 100% response). BUT much worse first thing in the morning. Chrisbox
I know what a flare is now!!! And I know how to advocate for myself and to whom. I too was very stiff in the morning and it lasted 6 hours! i switched to morning & evening doses. Then I did the evening one at 11pm & it’s much better.
Honestly - there is no virtue being on too low a dose, at best you feel rubbish, at worst you may let in a full-blown flare and need a higher dose again. Below 5mg you really aren't on a dose to be concerned about as it is well less corticosteroid than your body MUST have to function anyway - and a major limiting factor now is probably your adrenal function returning.
I am down to 3 mgs for 3 weeks now but sometimes I get these "feelings". No, not the joint pain, but weird feeling of like some aches.
What I like is having my knee hurt. Before I got PMR that was my only worry in the world ... and a few ribs that were compromised. So when that started hurting again I feel like I’m working towards normal
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