You know how when you are approaching something very large in the distance it seems you'll never reach it because the brain has perceived it as being much nearer than it really is?
I feel a bit the same about my various attempts to permanently reach zero pred.
In 2020 I was at zero pred for a few weeks. Symptoms returned, and although tried waiting it out, they just got worse. Eventually, even after a few months at my previous lowest best dose, symptoms began to resemble the way I'd felt pre-diagnosis years earlier and CRP number was higher than it had ever been. So, not quite back to square one, but increasead dose and slow taper neverthless.
So here I am, several years later, having happily tapered to 1 mg. Then .5 mg. But now that I've been cautiously poking the sleeping dragon with the occasion (very occasional) zero day, I feel the warning signs in my neck and shoulders.
What to do? Try and wait it out, still occasionally poking, or submit to the possibility that even one or one half mg pred is still necessary and may be forever? Incidentally, I've found that fatigue and shakiness caused by not taking pred on a given day seems to have basically smoothed itself out and isn't an issue any more.
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HeronNS
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A friend in New Hampshire has been dealing with this for many years! Years. For the last twenty, she has been on one milligram per day. Each time she tried to get to zero...back she went and ultimately accepted it. I'm now at 2 for two more weeks, then 1.5 for four weeks....but we'll see. I don't mind staying on a low dose...but I also take TCZ. Good luck...let your body guide you.💞
My father had PMR/GCA for last 8yrs of his life and was completely fine at ½mg but every time he dropped to zero his symptoms re-emerged and gradually became worse till he had to take that ½mg again. It's amazing that such a tiny dose makes such a big difference. I hope you reach a satisfactory outcome soon.
It is odd. Do I feel better with this info, and what Grammy80 has shared? Shows it's normal, but also a bit discouraging! Well, I have an understanding doctor so should be thankful for that mercy in any case. 😊
I am grateful. But it seems so silly that I could have been so well all summer, and now, having had about 3 or 4 zero days in the last several weeks, here are those stupid niggles again. I can't remember if I felt them the first time I got to zero. Might have been determined to keep going through the extremely slow taper I'd set for myself, and also remembering others who've said they didnt feel so great for a couple of months afterwards, but then they were all right, pred free and symptom free. Now that I know this method won't work for me I want to be absolutely sure that PMR niggles are truly gone. Also more sensible after previous experience. There's no way that half a mg would be helping OA, so I'm not blaming this on arthritis this time!
I think mine was damaged by cortisol injections (3) pre GCA diagnosis when GP thought I had a frozen shoulder.
I also have osteoarthritis in shoulders -so before it was replaced (4 years after GCA went into remission) same shoulder had another couple of injections-so no wonder it’s in a mess. Surgeon did say he’d put a couple of stitches in it when he replaced shoulder -which is great in itself -but RC isn’t! But it’s liveable with the majority of the time.,.😳
I’ve had 2 injections in my right one, first one was great and lasted 15 months but 2nd one I had in July only lasted a few days. My left one has different issues and is more nerve type pain but also had an injection in that one and again doesn’t seem to have worked as my range of movement is very restricted! Currently waiting for an MRI scan of my neck to see if anything is causing it! Think I also have osteoarthritis from all my years lifting tables and chairs in my job in school!
I absolutely agree with you. The penalty paid being conscientious! I’m so pleased I was able to talk to you and find such a helpful group as not sure where my mind would be! Thank you so much for all your advice 😊
One is always tempted to say it must all be psycho somatic but of course we know it isn't. Those pesky symptoms just remind us all that however much we want it to go away it hasn't yet burnt out. Tell me Heron, at that low dose has your skin recovered its robustness and stopped bruising.
I faffed around for a year below 1mg, courting zero. My body did know it was missing out a few crumbs, or so it felt. It takes courage, especially I imagine, if you’ve been bitten once already. It’s encouraging the wobblies are not persistent. Carry on prodding, saying nice things to your body fully one day, it’ll seem right.
Yes, the problem is the flare I had in 2020-21 was really quite a shocker. Didn't need the starting dose to get it under control, but the symptoms were awfully like early untreated PMR back in 2014. Think I'm a bit gun shy now.
Very nice comparison Heron.Finally finishing a treatment does feel just like the feeling at the end of a long journey when you are close to home.
It's a hard one. You have more experience of how your body has responded before at this zero point than we do ; it's such an individual thing and the return of symptoms needs judging as to whether it can be caused by any other conditions you may also have.
And even the last kick from your body as it goes through final withdrawal from a drug, which in itself can make you feel awful for a good few weeks and the parts of your body that are weaker or prone to OA pain can play up as well.
If you can rule out other causes then go back up and try again.
If there is a chance it could be inflammation from other causes you could try a few days or a week using another pain killer and see if the symptoms feel better on that first, then if they aren't go back up again.
Its all down to listening to your own body and what your experience of all of your illnesses has taught you over the last several years.
Take it slow and easy and try to rest as much as you can especially in that first week on zero pred because it's surprising how much difference that .5 mg makes to your body for pain in general; and as it leaves it for good.
I certainly found I had to scale back even my relaxed normal in the first week of a taper and even more so during the first month without Pred as every ache and pain I hadn't felt for years from other issues always raised their ugly heads, Hugs , Bee
I see where you're coming from; we become wary when a flare comes when all seems well, particularly when we try and outwait it, and this doesn't work - because sometimes it does.
But on the half full front, .5 is a good place to be. I don't suppose it's doing any harm and it's doing good - the issue is psycologically wanting to be free. Fully understand. Have you thought about .25 as a staging post, rather than .5 and 0? Perhaps the next, slow, aim is to get to .25?
I faffed around for some four years after first getting down to four mg. I hovered mostly between about three mg down to a half mg, then tried two goes at zero. First time it was 72 days at 1mg, followed by 30days at a half mg, but that lasted barely 11 days before reverting to 5mg. Second time, it was80 days at 1mg, followed by 30 days at a half mg. This time I lasted for 108 days before going back to 3mg.
Then, third time lucky, it was69 days at 1mg, followed by 42 days at a half mg. That last half mg I took on 30th September 2022, so it is now very nearly a year on zero.
Even now, I still think I feel twinges, and I’m certainly not 100% sure that the pmr is fully in remission, and my muscles are, for sure, a lot weaker than when I started, but no surprise there!
A half mg always made a huge difference to me, and if that’s what is needed for you, then so be it.
With the help of Tocilizumab, I got down to zero 15 months ago, but 6 months later the aches were back - so up to 5mg for 5 months. I'm now on my way down again and tapering from 2.5mg to 2mg. My Rheumatologist says to taper until I find the lowest dose that is effective for my GCA/PMR and not to aim relentlessly for zero!
That was zero pred, which coincided with zero TCZ at the end of my NICE ration. What followed was 6 months of MTX, which didn't appear to do much, as the symptoms re-surfaced. (Sarah didn't want to leave me on nothing at all. In hindsight, I would have been better on a small dose of pred.....)
So things reappeared 6 months after TCZ and pred - in spite of MTX. Hope that makes sense.
Yup - perfect sense, the underlying cause is at really low activity. Given the MTX does nothing for a lot of patients, that was a very typical result, happens a lot more than doctors will admit. Would have been interesting to see if a couple of weeks at 5mg and dropping to 2mg would have done the job. And I hope it is entered in Sarah's "does MTX work" file! It may for some - it doesn't for most.
Once I got to 7 or 8 mg (can't remember) I always dropped by no more than .5 mg, plus started using dead slow method at 10 mg. But that was back in 2015, hence my not so happy take these days....
Hi HeronNS! We understand how you feel. But try and look at it from a different angle. I am down to tapering 0.75mgs, taking it all in its stride. So far I cannot do 0.5mgs. If in the future I can, well , ok, but if I cannot, does it matter? They are very low doses but make all the difference to pain and pain free. I have been taking blood pressure pills for over 30 years. The doc would never say stop them. Blood pressure pills are for life, I accept that, so I accept that perhaps Pred on such a low dose is forever. Keep smiling and keep strong.
Let me add a question to your question: are there really any long term, negative consequences to taking 1mg of pred. a day? That's what I have been on for about two weeks with no flares. With all the horror stories one reads about the results of totally tapering off of pred., it leaves one to wonder why mess with success? It's an auto-immune disease, right. It will always be there...lurking. Is 1mg not a reasonable price to pay to keep it at bay?
For years I've been telling other people not to worry about a small amount of pred, and have not really had side effects myself for years, not since my dose got down to 3 mg. It's difficult because if one doesn't actually need it any more, then it would be nice not to be taking it, but there's no way to find out if it can be stopped without actually stopping: possibly okay, but possibly not. The thing in my favour this time around is CRP is really low, which it wasn't last time. On the other hand my neck and shoulders really are better on the days I've taken that 1/2 mg. So....❓
It's an auto-immune disease, right. It will always be there...lurking.
Well yes and no -it is an auto-immune disease -but it is also described as self limiting -which means for the majority of patients it does go into remission.. and stays in remission-it can reoccur, but it’s not a given.
I always forget that sites like this draw folks who are having problems and are looking for help. No one goes looking for a site like this to post that they feel wonderful. I will stay on 1mg for two more weeks then shift to 1mg every other day for a month and hope for the best.
I think 1mg a day is not so bad. Like you, I was off pred for a while, but then had to start up again. It was discouraging, but then a rheumy told me I am unlikely to get better and aim for 3mg maintenance dose. Oddly, that was quite liberating. I no longer have to try to get lower all the time and it really doesn't matter how long it takes me to reduce by 1mg.
Hello , I can Identify with all you say I’ve been so close to the finishing line on 2 occasions only to get those tell tale feelings of fatigue but have not had any PMR symptoms for quite some time now and took my last prednisolone doze 3 months ago so hopefully it has run its course over the past 4 yrs ( touching my wooden table ) . I shall keep logging in to this site to read all the posts and share my personal experience when ever I can . I wish you all the best for the future and to leave this dreadful condition in the past .
I really feel for you Heron NS and can so relate to where your at. It just seems like this disease wants to milk you for all your worth!! I too was tapering reasonably well, or so I thought, and after 6 weeks at 1.5mgs prednisone I woke one morning unable to move my neck and shoulders.So maybe I've 'slept the wrong way' after several days I had to accept yet another flare....and on it went til an increase in dose meant I wasn't in pain drying my hair and driving. I'm just feeling down. Oh to have my old under appreciated life back.I'm wishing you well.
Having just looked at your original post I would say your issues are because you were started at too low a dose, and subsequently tapered too quickly. I know you have only followed doctor’s advice, but they haven’t done you any favours….
10mg is not high enough [not sure where that figure comes from [lowest quoted in most guidelines is 12.5mg] and expecting PMR to be gone in under 2 years is over optimistic.
I know it’s too late to say, but had you been started on a higher dose and tapering more slowly your experience would have been much easier. I feel very sorry for you.
Many thanks DorsetLady I very much value your expertise and appreciate how kindly you impart your knowledge. In hindsight I honestly think you are right.
I certainly went to Many specialists seeking treatment but sadly it was pretty useless and certainly unhelpful and on occasions abrupt verging on rude, not nice since I was paying several thousand dollars each appointment.
Again thank you.
If only I had joined thos wonderful forum much earlier.
Seems a not uncommon experience with rheumies. One is left to ask why they chose medicine at all and rheumatology in particular where they were always going to find they can't cure their patients and they will be around for a long time.
Well at the time the disease is well and truly virulent you are undermined by constant pain and pretty much unable to advocate for yourself. So yes, I was very undermined by expensive specialists. They definitely are not Gods, but certainly give the Impression they are.
Honestly I have gained a wealth of important information at this site.
So BIG thanks to all the wonderful ambassadors who hold the values of P.M.R sufferers with great integrity.
I am very lucky in the rheumies I know best - all amazingly empathetic people. The first 2 I had in the NE of England scored resounding fails mind! One diagnosed osteoarthritis in my knee by "feel" - no sign on imaging done here 13 years later. The other didn't listen to my report of what pred achieved in under 6 hours and decided it wasn't PMR but psoriatric arthritis - because an aunt had had psoriasis!
I understandtotally. I’ve tried several times to get to 1.5 and can do a slow trial dose or two and back the pain comes. I try an ibuprofen and if that doesn’t do it back up I go. I’m at seven years and wonder if I’ll ever get off. I keep hoping at zero some abdominal fat will move off. I’m at a perfect weight except for that. I have no desire to be no carb so there you have it. Best wishes
When I started pred and got elevated blood sugar (weight was not an issue) I gave up virtually all "white" carbs (was astonished at how much wheat I'd been consuming in various forms) and added sugar. As I don't have a particularly sweet tooth that wasn't too much of a problem. I continued to eat fruit and unlike some who go as carb free as possible didn't give up root vegetables, although potatoes were off the table for a while. Also ate small quantities of brown rice. Breakfast stopped being a high carb bowl of cereal but instead high protein (eggs, pumpkin seeds). ( After a summer this year of dental work rendering it impossible for me to eat nuts and seeds I've discovered that these must actually be one of my main sources of calories!) Also I ate a lot of salads, another thing which was very difficult for a couple of months, and the length of time it takes one to munch through a big salad was a very good appetite satisfier. Eating protein instead of carbs also satisfied the appetite, probably better in fact. I started pred in June, and by February of the following year it was kale I craved. I'd say it takes a couple of weeks to lose carb cravings, and is easier if they are all eliminated for a time, or at least, as I did, the empty ones are.
are you sticking to .5. I got to .5 and tried to let it go and now am back to 2 and SO ANNOYED! haha. I think I should have stayed at .5 forever! .. now I am DSNSing towards it once again. back to tap. worried about the bones! Hope you are doing well!
Half a mg seems fine. I'm going to just keep on taking it with the occasional zero day, not really trying to do a measured taper to zero, and see how that works in the end. Took zero today and so far all good. What happens now is feeling really really tired on a zero day, but the last couple of times that hasn't happened, so I'll try the zero day again in a few days. So far every time I've got to about zero every couple of days I start to get pain again so no hurry to move fast at this point! It really is "dead slow nearly stop"!
And PMRpro is right, the effect on bones would be miniscule at this point. The largest effect on our bones apparently occurs during the first three months. I read this in a number of places back in the day when I was trying to learn. This may be partly because that's when our dose is at its highest, but I wonder if there's a point where our bodies adjust and the bone effects are lessened? This is just a question I have, never seen anything to suggest it's the case.
Very interesting about the bones. For me it was much worse later. The first year on prednisone made no difference. I was the same . UP .01 in fact. when I was taking TAP the next time was after Covid break from TAP and my bones had gotten much worse. from -2.7 to -3.1 (the worse site) so now I am back TAP dancing. albeit slowly. but the hitting of the heels apparently is good! So glad you are doing what you are doing with the prednisone. So good to hear!!!!
Was it the same operator and same machine? And were you in exactly the same position? Unless you were you can't compare the numbers - they are quite sensitive to each of those factors.
Oh dear. But it would likely have been the lack of the helpful exercise. I was really worried when I couldn't walk properly for nearly a year, but never had a DXA scan so have no idea if there was any effect or not.
Yes, heel drops themselves are actually a recommended exercise for the bones aren't they? It's the impact. Apparently, while walking upstairs is good for the heart, walking down is good for the bones!
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