I have been on Pred for 10 months. I am experiencing various side effects including weight gain (1 stone), swollen ankles, muscle weakness, skin more easily affected by small nicks and bruises, blurry vision in evenings, and others. I attempted tapering in the summer but other intervening health issues interrupted that and I was unable to separate the symptoms being either PMR or something else. I consulted ny GP today and he has prescribed a tapering schedule of 16mg (current dose) down to 13mg for 3 weeks, then 13mg down to 10mg for 3 weeks, then 1mg less for 3 weeks at a time until I reach 5mg then stop. This goes well beyond the previous DSNS taper plan I tried. I can honestly say I do not feel any of the old polymyalgia symptoms I experienced last summer. I am as much to blame as the GP for not checking back with him long before now and I am definitely keen to have these side effects brought to an end. Obviously he has told me to contact him if there is any "rebound" of PMR during this programme of dosage reduction so we can tinker with the scheme.
I would welcome any thoughts or comments.
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craighead72
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I would say it is too fast in that 3mg at a time is a lot and 3 weeks is barely long enough to get used to a new dose and know it is still enough. Below 10mg 1mg per month is the maximum. And you won;t be reducing that dose relentlessly to zero, you will be looking for the lowest effective dose for YOU and this moment in time. The PMR is likely to still be there, just you are on plenty of pred to manage the inflammation.
Top experts (not just us) say that no reduction step should be more than 10% of the current dose - so not more than 1.5mg where you are at present. Some patients will manage 2mg OK but more is a bit risky.
For the weight gain - cut your carbs, especially processed carbs and added sugar and limit your fruit intake, preferably to just berries, definitely not bananas! It isn't NO carb, but LOW carb and how much you need to cut to lose weight depends on the person. Some of us have to cut a lot but others are luckier.
I think 3mg at a time is possibly too much in one go because you’re more likely to get withdrawal symptoms. On the whole drops of 10% or less of the original dose (the one you’re dropping from) are easier to weather and this is nearly 19% and then about 23%. Generally withdrawal comes on within a day or few but you need to be reliably over it before the next drop so you can differentiate between a flare or withdrawal. I found it easier to make smaller steps so 1mg per week instead of 3mg one day and sit for 3 weeks. However, I didn’t have PMR, just GCA. The trouble is it is so individual but caution seems better in the end.
It is a bit alarming to hear you’ve been told to just stop once you’re at 5mg. You have been on steroids far too long to assume your adrenal function is up and running while on 5mg and even if it is, it still needs to suddenly cope with going from 5mg, which is not insignificant, to zero in one go. It’s fine if you’re on a rapid schedule for something like a chest infection but not long term steroids. I’m surprised they have advised this. Adrenal function aside, if you flare having come off at 5mg you will have no idea if 2mg or 3mg or even 1mg will have stopped it. You may then have to go back up higher than you need. Also, 10 months is still early ‘days’ for PMR. To be off in about 5 months still puts you well under 2 years.
Regards weight and swollen ankles, have you tried low carb diet and low salt? It helps many people avoid these on Pred.
Agree with PMRpro - too fast and too big a reduction at any one time.
You MAY just about manage the drops to 10mg, but after that it will be a struggle, and GP doesn’t seem to have factored in the fact that adrenals need to be ‘nudged’, not bludgeoned into working again once you get to singles figures.
As for stopping at 5mg - did he really mean that, or did he mean stop tapering once you get to that level?
As I said the other day - they went to all that effort with the new steroid card because of this sort of thing, Doesn't seem to have achieved much does it!
Thank you all for your replies which are all saying about the same. On the remark about stopping when I reach 5mg the GP meant I should stay on a daily dose of 5mg and review it then.
Good! That's how I interpreted it too. I think you'd find a slower taper would be easier for your body to adjust to and in the end would be more successful. I took a couple of slow taper plans in to my doctor and asked her what she thought of them. I intended to follow one anyway no matter what she said, but thankfully she approved. Always good to have your doctor on your side!
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I am back in relation to my thread of 28 days ago. My GP had directed me to reduce my Pred from 16mg (been on for months) to 13mg for 3 weeks then down to 10mg for 3 weeks. Reduction to 13 for 3 weeks went well - felt no adverse reaction but now 7 days taking 10mg and waking up at 5-6am aching in shoulders back and waist. Should I go back to 13mg and start a slower taper. GP’s plan seems too severe, as predicted by replies I received to my previous post. 13mg down to 10mg is 29% drop!
As some of our more knowledgeable and experienced people have already said, this seems to be a very fast taper.
When I taper, I also always use the DSNS method.
This in itself is a regime taking several weeks to complete before reaching the point where I'm taking the reduced dose daily, and initially I always get some 'withdrawal' symptoms that usually emerge within the first week of beginning the taper.
The withdrawal symptoms can feel similar to a flare, and for me, usually manifest with some headaches & a few aches and pains. These symptoms diminish fairly quickly though which is how I recognise them as not being a flare.
However, I remain on the reduced dose for at least another 4 to 6wks to ensure I'm stable on it before beginning the next reduction.... if the new lower dose is not enough to counteract the inflammation in my body, it can take a few weeks for it to manifest, thus leading on to a flare, so I ensure I allow plenty of time to make sure this isn't the case.
As Pro has already advised, I've kept my weight down by eating a low carb but not no carb diet.
For many people, maintaining a healthy weight could potentially be a way to stave off some of the other possible side effects of the steroids too.
For example, significant extra weight gain can increase your risk of developing conditions such as steroid-related diabetes, high blood pressure & oedema so making a concerted effort to stay a healthy weight could bring about some better outcomes in other areas and prevent other steroid-related complications emerging.
Most side effects can be eased, minimised and in some instances, eradicated but this of course will vary from person to person.
I also have more fragile, delicate face & body skin now, so I only use natural, gentle products on it and moisturise, moisturise, moisturise, daily.
PMR/GCA can be bewildering conditions to even begin to understand but you're doing exactly the right thing by coming here and finding out as much as you can. The more you educate yourself about the condition and the steroids, the better & more well-informed choices you'll be able to make.
I believe that berberine has helped mitigate for me some of the unwanted side effects of the steroid: weight gain, moon-face, diabetes. Berberine is an OTC supplement that some diabetics use in place of prescribed drugs. You might look into it.
From my own experience when I was first diagnosed in August 2020 I was put on 15mg for 3 weeks, then reduced to 10mg for a further 4 weeks, then down to 7.5mg where I remain and I am only just starting a slow taper. From what I can gather reducing fairly quickly during the first few weeks can be achieved (it certainly worked for me with no pain), but the longer you're on steroids the more difficult it become to reduce quickly. PMR has to run it's course and in the last couple of years I've become aware of quite a few folk trying to taper too early, say after a few months and, as a result, having bad flares and having to increase their dose beyond that at which they started. Just my opinion of course, but my mother went through this cycle.
It’s not purely the length of time you are on steroids, it’s more to do with the activity of the disease. ..and that can vary from person to person. How much built-up inflammation was there to clear out at the beginning, how quickly that happened, the starting dose compared to that, how active your illness is on a daily basis, your lifestyle.
It’s true that in most cases of PMR [and GCA] the initial dose is higher than is required on a daily basis, so if it clears the existing inflammation quickly you need less going forward. Until of course you get to a lower level when the margins of plenty to control the daily shed of inflammation, to just enough, to not definitely enough.
We may both use the same cake recipe, but if the heat of your oven differs to mine, or the cake tin is a different size, the result could be vastly different. Most recipe compilers say adjust cooking time, pity the medics don’t adhere to same principle…..
Yes indeed, I do agree. There are a lot of GP's and rheumatologists who want you off steroids as quickly as possible and it's not always the best policy. I've been on steroids twice in my life. The first time was a very high dose for a very short period, with no side effects except that I looked like a hamster. The second time is now and it's still a steep learning curve.....
I understand all the replies received. Meantime hindsight is catching up with me. I am beginning to wonder if I ever truly had PMR. As explained, at the time I consulted my GP in early 2022 I was suffering a string of ailments from suspected heart attacks, cancer scare, lack of energy, waking every single day with crippling aches and pains, depression all of which were eventually ruled out through tests or abated either before or after pred was started. This all followed a Covid poster jab in October 2021. One of my golfing pals who is a cardio-thoracic consultant was of the view that my immune system had been compromised. The GP reluctantly prescribed pred (almost at my insistence) despite no blood results backing that up and because of intervening health problems last year I never really made much progress in reducing my pre dosage. Have I perhaps been unnecessarily on pred at around 15/16mg for too long when it was not really required and am now suffering the side-effects previously described? Who knows.
There does appear to be a reactive form of PMR that is triggered by the Covid jab. However - you should not have remained at the starting dose of 15mg - and the primary question is how you responded to that starting dose. If the symptoms improved on pred then whatever it was, it involved inflammation. If the symptoms didn't improve with pred then there was no point continuing with it if an increase in dose didn't elicit the defining improvement in symptoms in response to pred, There are several causes of the symptoms we call PMR but they aren't all the same and not all are responsive to pred. Patients who can't taper the dose without a return of symptoms should be referred to a rheumy.
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