Diagnosed with PMR 6 years ago (though I'd already had it for 8 months), I've been tapering my prednisolone VERY slowly through the lower doses over the past 3-4 years. On just a few occasions (but not for the past two years), I had to backtrack and raise the dose to a previous comfortable dose, but I've continued to take the 'slowly, slowly' advice of my excellent pharmacist and more recently, this amazing online community. For me, there's no question that tapering super-slowly is the best strategy.
My question now is this... I'm currently taking just 0.25mg every three days, but the next steps depend on what dose of prednisolone is actually significant. At what point can I safely assume that the dose is so negligible as to make no clinical difference to the body? For the record, I still have minor residual stiffness in my legs when I stand/walk after sitting down for say, half an hour or more. The stiffness disappears within seconds and having once been pretty disabled by this wretched disease, I can very easily live with the way it is now! I just need to know how to make those final steps toward zero pred. Despite having a very supportive pharmacist, even he doesn't have the specialist PMR knowledge needed to answer this one!
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skylark22
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I would say just increase the number of days between each dose... you say you take it every 3rd day, so increase to every 4th day for a couple of weeks [or whatever you feel happy with] see how its goes, then try every 5th day and so on until you get to no days.
No one can tell you what dose is significant for you, it's your PMR, nobody else's....you can only give it a whirl and see!
Yes, it's my plan to keep increasing the gap, but I'd hoped to discover how far to go with this before the dose is so small, it effectively becomes 'irrelevant' to the body. Maybe there's no such answer! I'll just keep on tapering for a few more weeks/months and hope it all keeps going smoothly. Thanks for replying.
Who knows! I faffed about with eventually crumbs of Pred for a year getting from 1mg to zero. Now and you’re off I would recommend carrying Pred out with you just in case you have some challenge to the body and you find your adrenal glands are fine on everyday setting but don’t have a fully working emergency setting. A year is recommended though I’ve only just started leaving home locally without it some three years later as I’ve had a few ‘events’. As for PMR, only your body knows what’s what with that.
Just wondering what level is appropriate as an emergency dose when one is on zero. 5mg ? Did you carry 5’s and 1’s and decide how mild or bad you felt.
I really can’t say because everyone and every situation is different. I only had 1mg at my disposal and found that 1 or 2mg did the trick but after I took them, I totally stopped and went to bed. Ideally medical advice should be sought and as I said it depends on why you’re having a crisis, how often it’s happening and how you were feeling before it happened.
I mentioned previously suffering from one of those non Covid respiratory infections going around… by teatime I was shaking uncontrollably and within 30mins 5mg restored balance. I remember PMRPro saying 5mg was fairly typical.
I think the same - go to every fourth day, every fifth day and so on. I owuld have thought you are at the insignificant level but who knows! And it is like a talisman isn't it?
I would ask for a Synacthen Test from an Endocronologist. This tells you how your adrenal glands are after being on pred. Your GP might want to take a short cortisol test. However, I would push for the Syn test as you have been on a low dose.
Remember when you take your last pred - it can take up to a year for your adrenal glands to become fully functional and you must carry your steroid warning card.
My Rhuemy has booked me in for a short syn test. I wonder if she means a cortisol test. The appointment letter says short syn test, I'm to stop pred (1 1/2 dose) for 24 hours beforehand. Is there any difference?
Hi quick q what does the steroid card say...we don't have them here...at least that I know of. I have a med list in my wallet under ICE and was looking for some language around the pred issue. Thanks if you can help....it might seem stupid but.....lol these days that's my norm....
Thanks everyone for your support and ideas. This forum is such a valuable source of help and expertise. I just wish I'd discovered it sooner, and I make a point of telling friends and contacts about it whenever conversation goes in the PMR direction!
Yes, I’m a big fan of the super slow taper. After seven years and nine months of taking prednisolone for PMR, I finally got to zero on first October 2022. It took just over five years below 5mg, and then two attempts to get to zero in the previous two years, both of which failed!
After six months at zero, I’m now doing ok, so it’s third time lucky, I hope.
I think you’ve had some great advice from those who know best, but, at the end of the day, you’ve just got to go for it, and hope that the PMR stays dormant. I still get the odd day of feeling tired and rubbish, so I think my adrenals are still settling down.
Thanks, Paddy - and well done you! To be honest, I've only had very limited adrenal symptoms, so I've no idea how far my adrenals are affected. On the other hand, it's been so.long since this all began that perhaps I've just forgotten that I once had loads more energy, etc!
All the very best to you for a PMR-free future, too!
I am super in awe of you for getting down to such a low dose. It is the dream! I agree, go a day extra in between doses. How do you get your 0.25 dose? It must be teeny.
I was started on pred in September 2017. I got myself down to 2mg by 2020, but started having issues with shakiness, feeling sick, low blood pressure etc. As it was during lock downs my rheumy told me to increase pred up to 4mg to see if it made me feel better - it did. I eventually got to see Endocrinologist in 2021, had the short synth test which was ok, but I was on 4 and not having symptoms. Another year reducing and I'm now stuck on 3mg. When I try to drop to 2.5mg I get the horrible symptoms.
I'd appreciate any guidance on how to taper slower, I can't work it out, and the advice from doctors is go slow. But how? It'd be do helpful if there was a 0.5mg tablet.
Anyone else have issues from pred? I have gained 50lbs, am prediabetic, metabolic syndrome. As well as all the rheumatic/autoimmune stuff.
You can lose weight while on pred - it is possible but usually means cutting your carbs drastically.
Using one of the slowed tapers we go on about helps, even if you have to repeat each step a few times before going on to the next one. You'll find them under Tapering in the FAQs.
What sort of symptoms do you get at 3mg? PMR or adrenal-related? If it is PMR then however slowly you taper you won't get below the lowest dose that manages the inflammation. If it is adrenal-related, then it is a stage you have to get through and it takes time until your adrenal glands remember they need to do something after their holidays!
I actually found it very easy. I'm now back to no belly. I totally cut out bread, potatoes and fried food. No cakes!
I love tortilla wraps with hummus and whatever salads are available
We can't be bothered with restaurants and our treats are usually Marks and Spencer salads and fruit.
Yay!
• in reply to
Having shared the joy I am aching like crazy here. Knees, ankles, shoulder on one side and so on! I do miss ice cream badly though. Any recommendations?
I find when I cut out carbs I am good for a few days and can find a small slice of ham a treat. Then my body starts to crave all those things you are not supposed to eat - probably because our bodies are programmed not to lose weight in case the supply of mammoth dries up. Quite often I crack and indulge. The important thing is not to punish yourself and think the diet is over but think well that was a lovely treat back to normal eating tomorrow. Sorry I am just saying what you already know and any weight lose is a victory.
Hi, I’m in a very similar situation to you. Took me 3 months to taper to 2m until I felt my body could handle it. Now trying 2 for 2 days, 1 1/2 for 2 and so on now for month. So far, I’m able to manage by decreasing very slowly. Everyone is different, so I guess trial and error is the only way forward. Good luck with your journey to be steroid free. I wish you well. Let your body decide how you proceed.
I love fresh blueberries and strawberries too. I'm not sure on the yoghurt though. I do like Alpro yoghurt at times but not sure about plain. Recommendations?
Thanks so much for reply. It is both - plus psoriatic arthritis. I'm hoping to start on a dmard called Apremilast but that's for PsA not sure if it'll do anything for pmr. I'll look for the taper thread. Thank you
It is possible the PMR symptoms are due to PsA - it, like all inflammatory arthritides, can present in the same way as PMR, what is called a polymyalgic presentation
Prednisolone tends to weaken the bones = not good. I do take a few other medications for other things, but for my bones take daily vitamin D3, and vitamin K2 which helps its absorption. Then I try to get plenty of calcium in my diet - milk, eggs, yoghurt, spinach, figs - look it up.
I also am taking .25 mg. though for me, it's daily. I hadn't thought of continuing on with gaps between the days, but it's a good idea. Though I must say, I am so keen to stop the pred altogether I am getting impatient! It has been four years.
Fatigue has been a problem for me all along, and I can still have days when I get a whack of it and have to give up plans for the day and take to the sofa. I assume this will pass. Other aspects of PMR have gone away, so I have to believe all will come right in the end. The extra weight has gone, as people on here said it would. What a relief! I have been very careful with what I ate, though I couldn't do a low carb diet, and now I am lighter than I was when I first got PMR I think. Being so heavy was really demoralising.
I do have problems with my knees, getting up and down, awkward for gardening. I thought it was arthritis but it doesn't seem to quite tally up. I do have some arthritis in hands, hips etc, but maybe this knee difficulty is PMR related. I hadn't thought of that, as it wasn't part of my PMR symptoms earlier on.
So what you and others have to say is food for thought for me.
My heartfelt thanks to the stalwarts on this forum who have been so much help through these PMR years, I am still not quite out of the woods , but almost there. Best wishes to all who are struggling, it will pass!
Take the leap to zero. I did it in June last year after tapering over 12 months. I had to resist the temptation to take pred again as I had low level symptoms that were absent when I was on 1mg. The last month or so, I feel almost normal! Everyone is different but I believe that by putting up with some symptoms, my body has been able to learn to fight back. Now, I just get the odd very minor flare up. Compared with many long term suffers on here I know I was lucky to only have the condition for a year or so but at one time I felt bereft and depressed. I had issues with side effects of pred that made me determined to get off it. Now my partner no longer has to walk slowly with me and I can go at normal speed. Being as healthy as possible in terms of diet and exercise may well have helped too. One thing is I would get professional medical advice if you can. It’s important to have their perspective on your options. Best of luck
I got to zero last April. I tapered like you to 0.25mg. Took this daily for about 3 weeks or so. When after this time and no PMR pains I started knocking off 1 day a week over several weeks. Then took the leap to zero. I did have a few aches and pains, mainly in my right hip area. This too a few months to settle with anti inflammatories and exercise. Then an X ray revealed "mild arthritis". I take chondroitin with glucosamine for this. My dog takes the same but dog variety and it worked for him so reckoned it might do me good, human variety of course. And I still take D2 K3.All OK so far. No aches and pains.
I stopped at the end of January when I was taking 0.25 g every other day. I had the same dilemma. I too have slight stiffness in hips after sitting at my computer at work. But this soon disappears. My right shoulder can be a bit painful too, but as my left one is ok, I’m not sure this is down to PMR. But it is nowhere near like it was. I’m due to see rheumy in May. I haven’t cancelled appointment yet as still wondering if I will wake up tomorrow back at Square one with a flare. I’m just taking one day at a time and if I can turn over in bed, get up and get dressed then I’m 200% better than I was at the start. Good luck with the remainder of your journey. 🙏 no flare ups for me and i continue being Prednisolone free.
I was on 1/2 mg pred for almost a year- then every other day for about 2 months and then I just stopped. That was 10 months ago. I do get aches and pains every now and then ( wrists mainly), but they feel nothing like pmr. I imagine its probably osteoarthritis, which was ‘covered up’by the prednisone. I do notice that sugar and alcohol (small amount!! 🙄) exacerbate the aches. Good luck 👍🏻
I’m now down to 4mg can’t wait to get to zero but my Rheumy says I should get to 2mg First hopefully I can get there! I’ve really been watching my diet, not having sugar is a big one, but I have been having a few G and Ts with zero sugar tonic water and I really love having this, my only vice now!.. really trying to lose some weight too, all in good time! It’s teaching me patience and being kind to myself, lucky I have such a beautiful hubby, he’s been my rock through everything! Thank you everyone for all your writing it is sooooo helpful xx
You most certainly don’t want to try to get from 4mg to zero in one step….and a drop from 4mg to 2mg is big. I appreciate you may only have 2mg tablets-but for an easier drop you could try cutting them in half -provided they are plain white uncoated variety- or a slower tapering plan
4mg is a massive dose to control low activity PMR! Even 1mg can be plenty to control small amounts of inflammation - but take it away and the inflammation will build up until there is enought cause symptoms - just as a dripping tap will eventually fill a bucket and overflow.
You will struggle to cut the tablets to get below 2mg though it is probably doable - combine it with a very stretched out slowed taper and that will help.
I tapered to my last pred dose in December. Although I was using 0.5mg as minimum dose, I was reducing it until I took 0.5mg every 10 days. At this point of reduction that you are, it is better to be slow then to have to go back to higher dose IMO.
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