I've read tapering info but still can't figure out potentially right course for me. The doc doesn't have any particular opinion. At this point I want to drop from 13.75 mg to 12.5 mg. My calves are tight, feel tired. I am a bit wobbly. I have to "work" against anxiety: breathing, tai chi.... I can walk a couple of miles not rapidly as I once did, and get little other exercise besides small movements. Past time frame:
--15 mg Prednisone for 46 days. --10 mg for 42 days --15 mg for 37 days (after covid booster or whatever made me shaky, anxious, pains in neck and legs) --12.5 mg for only 1 day --15 mg for 1 only day (had a fever) --13.7 mg where I’ve stayed without change (no alternating) for 22 days
Does 12.5 mg now sound like a decent idea? I only have 10 mg and 2.5 mg uncoated tablets. Thank for any thoughts, guidance, critiques, questions.
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Personally I would stay at current dose for a while long, say a month in total...the "feeling a bit wobbly" doesn't sound a recipe for success if you reduce right now!
Not sure if reading it correctly - so are you 13.75 (i.e 1x10mg plus1x2.5 mg plus half a 2.5{1.25} mg every day ..0r still alternating 15mg one day/12.5mg next day?
Personally not over keen on the alternating days way, so when you do reduce - maybe use a slower taper - see link for example - and drop from 13.75 to 12.5-
Thanks DorsetLady. I am not alternating. Part of my reasoning to go back up to 15 after one day of 12.5mg was because I decided I needed less of a decrease. So one day of 15 then a drop but only to 13.7 mg. I've been on 13,7 mg ever since.
Thanks so much. I updated my post so to try to be more clear that I wasn't alternating. I will stay on 13.7 mg for a full month. Should the wobbles (not major) go away? I had read your post on Slow Taper earlier (liked it best out of options). But the Slow Taper does seem to have a kind of alternating in it. I'm wondering what the point is in that and whether I need to do that. Thanks again.
With any slow taper you may have days when you have a lower and/or higher dose sandwiched, but you are gently increasing the number of days on lower doses as you go along whilst gently decreasing the number of days at higher doses.
With an alternative day taper you are doing one high, one low all the way though … slower one you are introducing the lower dose every few days, so I think easier on the body.
The idea is to challenge your body with the new dose just one day at a time at first followed by a few days of the old dose. But the other trick is to keep the difference in those doses as small as possible. As you found, 2.5mg is a big change at this level. It is recommended that any step down not be more than 10% of the current dose - at 15mg that is 1.5mg max.
Thanks. Wish my rheumatologist had some sense of that instead of dropping me from 15 to 10 mg. This board was the reason I went to 13.7 after one day instead of 12.5 (as she had agreed to). Ah, well. Maybe she's learning from the knowledge passed on from here, so she can do that with others.
I think many doctors still seem to think that once you are on steroids the underlying illness has gone - and it’s just a matter of reducing the meds. As we know it’s not like that, the steroids only address the inflammation caused not the underlying PMR - that’s still there chugging along- not cured/not gone - just part of it being controlled.
Never really sure why they don’t understand that - or maybe they don’t want to!
You can do 15 to 10 in the sort of things they use pred for more often - managing a flare of RA while the other medication is being adjusted to manage the disease activity better. Doesn't work like that in PMR: pred is the equivalent of the DMARD and it must be titrated carefully. That's the bit they don't get!
Argh! I can't imagine ever reducing in that case. I assume I have problems from some creative combination of the Prednisone and my 72-year-old body and the unraveling of the USA - on top of the PMR. How do you tell?
I've recently had failed fast taper, restarted Prednisolone 15mg much better on it this time for one month, then GP said reduce 2.5mg per month to 10mg then by 1mg per month.....fingers crossed this time.
Even 15-12.5-10mg is too much for some people- so just be aware, especially if it’s your second attempt…..as from 10mg, recommendation is 1mg every 4-8 weeks depending on patient and disease activity.
More important to take note of your body and how you feel rather than just follow the calendar come what may….as many on here have discovered.
Yes, thank you, going to be very careful this time, failed taper was awful, don't want to go there again! Different GP as well and he seems more switched on with it all, blood tests every 4 weeks and regular follow up phone calls to see how I am!
Hi I am not clear about how you feel on your current dose? Is it enough, do you feel mostly fine? If not, I would not think of reducing until you feel stable. I have always tried to keep the stable or downward trajectory with my tapers however long it took. I have some experience with alternating doses both at higher levels where my rheumatologist advised me to alternate doses for a week before I dropped a dose (in those days by 1 mg), and more recently when I started reducing from 2.5 mg to 2 mg too quickly (i.e. I didn't stay on 2.5 mg long enough) and needed to linger on alternating doses for four weeks. I prefer the DSNS method which allows me maximum control over the process.When you are stable for a while you start to distinguish withdrawal pain from the usual aches and pains which have nothing to do with PMR, or steroid withdrawal, or adrenal problems. It's useful to have a plan, but be prepared to adjust it as you go along.
Also if the high doses don't seem to be enough, I would ask my rheumatologist to look at the diagnosis again.
Good luck.
It is hard to advise as we all have different problems re: PMR. However, I would agree with Dorset Lady about staying on the same dose a bit longer. If you continue to feel unwell, perhaps it might even be better to increase your dose by 2.5mg after a month (this is what happened to me) to be able to function fairly normally and then after a month, reduce by 1mg every month. However, if you feel OK at the end of the month, you could start tapering by 1mg a month. My rheumi has told me to do this until I reach 5 mg. So far so good. Reaching a tolerable level of PMR, and then reducing gradually has worked for me as I am now on 7mg. Saying this I don't know what the future will bring, you could see a sad little letter on the forum 👀, but reducing very gradually has worked so far. I started tapering like this at 15mg.
Ok, this is very long. I’m sorry but to get the point across…Maybe this will help your mindset, or maybe it just doesn’t apply in your case. Or maybe you need to re-assess. Anyway, its intent is to help.
I’m in the US. I’ve dealt with one Rheumy and it’s been kind of an uphill battle. I think he acquiesces to what I want to do because I’ve read through the papers, printed and highlighted key findings. He is of the ilk that PMR runs its course in 2 yrs (the average is 6 yrs). Doesn’t matter the dose (I use DL’s 5-7 week simple taper am now in week 4 of the attempt toward 1.5mg). I’m now using 0.25mg as the steps and he’s not happy. Too bad, I’ve got enough 1mg, 2.5mg & 5mg non-enteric coated Prednisone that if he refuses to prescribe what I ask, I have enough through splitting (if no flares) to get me to zero which could be as soon as 9/30/22 or beyond for another month.
I don’t know what you mean by wobbly. The only Pred side effect I could feel without test results was like being on a caffeine high except when I’d fall asleep, and in my case my body would say night-night while I was watching TV and I’d wake up 2-3 hours later and go to bed. I had this constant rev to some degree from 80 to about 10 mg doses.
I’ve had a difficult time understanding others’ pain management and not sure if my interpretation of what is being said is correct. I can only say this, after going from a pain of 10/10 to 0/10 within 1 hour after being given 80mg (way too much for my symptoms) in the ER, I’ve been able to reduce (with occasional flares) using zero pain as the go / no-go for a specific dose. What’s confusing is I got less push-back from the doctor on raising the dose when at the higher doses than what I get after getting to about 15 mg and less.
Recently I went off on him. Because of him I tried using 0.5mg decrease instead of 0.25mg and in fewer weeks (3 wks instead of 5) and flared. He’s not happy that I’ve been on Pred for almost 3 years (my total cumulative dose is approximately 8.3 gm vs 20 gm threshold). Prior to this, doing things “my way” (by following the philosophy indicated in research findings for managing PMR or steroid dose reduction to promote adrenal glands recovering via the Endocrinology Society) I was doing fine. I told him that from now on we’re following the progress of the disease and not some arbitrary timeline. He was taken aback by my venom. Damn doctors get so tied in by statistical probabilities from various studies that they forget it’s a probability and nothing more. Use it as a place to start, then follow the specific patient’s progress and make adjustments based on that specific patient’s response, too hell with the study after that. If the patient is responding well and any side effects can be safely managed without undue discomfort then stay with what is working for them!
I follow the disease. When following NICE taper prescribed by the Rheumy, I suffered with each decrease steroid withdrawal side-effect for 24-48 hrs and 3 days after that potential flare. Having a flare really is counter productive. Have to increase dose until pain from built up inflammation goes away. Then return to the last dose where you were experiencing no pain.
(Here’s where I don’t understand when people say they always had some PMR pain - I always was able to find that pain-free dose. Maybe others could or did too but refused to increase the Pred dosage because their doctor scared the heck out of them with the list of potential side effects, or maybe they had serious un-manageable side effects. Everyone is different, I didn’t have that situation, other than he “tried” to scare me).
I’ve not hesitated to stop mid reduction and return to a previous dose for a week or two before trying again. How much I increase is based on the degree of the flare, and how long I stay at the last dose where I had no pain also varies based on how I “feel”. At 1.75mg I felt fine except after driving for over an hour, I’d get soreness in my left hamstrings (my PMR symptoms have always been limited from to my hamstrings in both legs, and under intense flare included my right shoulder). I turned my heated seats on and the soreness abated. So, since that was the only time I felt a returning symptom I chose not to increase back to 2.0mg but to stay at 1.75mg until that didn’t happen. That took 2 additional weeks at 1.75mg. Now that I’m approaching the first full week (wk 5 of DL’s taper) of 1.5mg I notice that “twinge” of soreness on extended drives and most likely I’ll be extending past the current “Estimated” end date of zero Pred, which is really meaningless. I’ll continue to pump the Rheumy for 1mg tablets to build up my inventory (I don’t tell him that, I say I’m almost out and need a refill. So what if my almost means late October+.😂)
Picture this. At a specific PMR intensity you get muscle inflammation. It gets high enough you start feeling pain. You take no action, pain gets worse and eventually the blood workup will show this as well. So, you need to get rid of the inflammation. To do this you have to increase the Prednisone higher than what was needed to keep it at bay originally. At the excess dose the inflammation abates, the pain goes away and you can return to the dose where everything was fine before. Now, maybe, the disease has lost some of it intensity, meaning you actually can get by with a little less pred. So you reduce the dose a little. If no pain that’s great. Give it a few weeks to see if inflammation is building up but at a very slow rate. If no pain, reduce a little more. If a little pain, monitor or increase dose ever so slightly. Currently I think I’m darn close to matching my disease condition rate of change.
Anyway. My recommendation, depending on “your” side effects is to find that dosage where you have no pain. And once you find it stay at that dosage for 2 weeks. Then try a 10% reduction if you switch to DL’s approach which I highly recommend. If you are following the NICE approach or what I call stepping off a cliff and seeing what happens, make that a 5% reduction. Don’t focus on the darn dose. Focus on what the disease is doing and by gosh if the symptoms return increase the darn dose and once stabilized for a few weeks, try again but cut the step decrease at least in half. Ask for forgiveness later. Depending on how many tablets you got, you can pospone that for a few months! Office visit, “So you now should be at x dose, correct?” You, “ah, no, I’m on x + y dose because I had a flare and had to increase it temporarily to get the disease under control.” Dirty look from Doctor, “You should have called me. Prednisone is a nasty drug, have you considered my recommendation to also take MTX?” …. Rinse repeat.
Lastly, I hope your GP and Optician are completely aware of your disease and Pred dosage. I was seeing my OP quarterly for exams and ocular pressure readings which she controlled with medicated eye drops. I’m off them now and she is slowly increasing the time between visits. I see the Rheumy every 3 months, each time wondering if he’ll refuse my prescription request. I’ve told my GP that I might be begging her to prescribe and why. She chuckles and doesn’t commit and says let’s see how it goes.
No I have not been using it. I found it on the GCA forum on Facebook. I think some people on that forum recommended it and it sounded as if they were using it regularly but can't be sure about that.
Okay thanks…..I did login initially because my taper is on it, just to check it worked….but never used it in anger!
Last time I tried it (a few months ago) after another member had complained about it, I couldn’t get it to work….am trying to find out current situation… still doesn’t seem to like me!
Steroid Myopathy??? My rheumatologist has responded to my "wobbliness" and tight/stiff calves and says I might have Steroid Myopathy. What the heck? Yet a new disease? She isn't talking to me about it but said I should get PT to strengthen my muscles. I really don't have much in the way of pain. I have the wobbles - having a bit of a hard time being in control of my walking. That along with a vibrating inside my body and again the calves issue. I am at a loss. This new possible affliction sounds pretty disastrous when I google it. Can anyone talk about this? Thanks
Of course! Thanks. But I have not heard this mentioned on the site so far as I've seen. It makes me even more unsure of what I should do. Wobbliness, tight calves, anxiety, vibrations inside me. Do I need more Prednisone or if I have this Steroid Myopathy do I need less? Crazy.
Preferably less pred and some exercises from the physio to maintain the muscle mass. I developed it while I was on methyl prednisolone - have never had it with prednisolone or prednisone. I was switched from methyl pred to a form of prednisone and the muscles returned to normal within a couple of months, just by going out and walking.
Thanks. I've been walking almost daily but I only go about two miles because more seems to make my body unhappy later. Occasional tai chi is at least movement. But hopefully the PT will help supplement. Less would be better but all the advice I'm getting seems to be that it is too soon to taper more. Was going to wait out a month's time. Only about a week to go.
I didn't walk that far - at the time I was using crutches after an achilles problem, also lined to the methyl pred! I started with the short circular walk in the village and slowly increased. The middle walk is about a mile. It is less the quanitity as being consistent and not over-doing it.
Yes - I've been on pred for well over 12 years - currently on 15mg because of yet another relapse. No problems at all with prednisone - it was just methyl prednisolone that did it and that must have been 7 years ago. It is worth asking to try a different form of corticosteroid if it doesn;t resolve with targeted exercises
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