Hi everyone am new to this too. I self diagnosed PMR and it was confirmed by my rheumatologist who put me on a high dose 30 mg Pred for 6 weeks, 15 mg fir 4 weeks then 10 mg and now on 9mg. Tjis is after 6 months now. If I try to reduce the fatigue, bilateral hip and shoulder pain hit me! I walk most days, eat healthily, enjoy a glass of wine (to relax), take Vit C,D, Calcium and multi vitamins. I have tried CBD but no better! Maybe need the stronger stuff. What causes PMR. It came out of the blue. I have sympathy for all of my fellow friends on this site. Keep active. Eat well. No sugar. Cut down carbs.
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Gumnut
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Hi gumnut, well done for getting a rheumatologist to back your ideas. It sounds to me like the reduction has been too fast and the steps a little big. Once people get below 10mg it's recommended that you slow down to 10% drops every 4 to 6 weeks. At what dosage did the pains return? Usually it's advised that you return to that dose, let it settle and then do a slow taper. There is a post in the pinned posts that suggests a few slow taper plans. Perhaps you could ask your rheumy if you could follow one when your symptoms settle. Good luck.🌻
Gumnut in reply to
Dear Poopadoop (love your photo. Is that you?) Thank you so much for your reply. Very helpful and caring. I am sorry you have been through so much. And hope your PMR will burn out. What dose are you on? Rhuematologist referred me back to GP for care after 1 consultation. My symptoms only returned at 8mg Pred big time. Last 2 weeks. A struggle. Trying 9 mg. GP seems to have left it up to me to experiment! Maybe will take 10 mg for w weeks then taper by 1 mg every 4 weeks. What causes PMR? I was a healthy lass before it struck one sunny morning in Cornwall😲
in reply to Gumnut
That's fine....we have all been there...in my fourth year so it's been a long haul but it's possible to have a good quality of life if you take enough pred to stop inflammation.
Gumnut in reply to
Thank you soo much Poopadoop. I will go back up to 10mg (2 x coated 5mg). If symptoms ease, will reduce by 1mg every 4 weeks. Is there a .5 tablet? It does seem as if I reduced far too hastily. I am so glad I found this site.
in reply to Gumnut
I use 1m uncoated and use my pillcutter to cut them.
There are 2.5mg coated pred (you can't cut them by the way) and 1mg when you can get hold of it (been a bit of a problem recently according to the pharmacies though not the manufacturer)! Using them you can easily reduce 1/2mg at a time. Or, as many do, pill cutter for 1mg plain pred.
Otherwise it is 1mg at a time using a slow taper like this
No .5mg Gumnut but you can cut uncoated 1mg in half (not coated ones ).
You have a good grasp of your condition but the reduction was far too quick and is why you’re suffering. You need enough pred to treat the level of inflammation in your body. Reducing too quickly lets the inflammation take control. Slow is the key and getting to know your body will tell you how to adjust your dose. Never reduce if you’re experiencing symptoms - they must be completely settled before the next reduction.
Best wishes
Dear Telian I am sorry for your diagnoses but hope all is going well. I too have had difficulty getting 1mg coated Pred. But am sure its temporary. Thank you for your advice. Greatly appreciated. I will take heed and follow all the advice. This site has been really helpful for me. Thank you all🌹
I have one 5mg and 3 one mg in morning
I think your problems stem from the rather large tapering steps you were told to take. Thirty is a bit high to start, but not really "high" dose, relative to what people take for other conditions, although only for a short time. But a drop of 50% was much too much to do overnight. Did you feel okay at 15 mg? What happened between 15 and 10? Were you at 10 for four weeks and still okay? A taper of 15 to 10 is 30%. It's advised that one should not taper more than 10% at a time. This helps in a number of ways. It helps avoid steroid withdrawal which feels a lot like PMR itself and can be confusing as well as unpleasant. It also prevents you from overshooting the lowest possible dose which will still control your symptoms. Pred doesn't cure us, it merely damps the inflammation to prevent damage and give us quality of life. Eventually in most cases PMR burns itself out, and often by the end we have managed for some time on a vanishingly small, but still necessary dose.
Dear Heron in Nova Scotia (wow). I hope you are doing well. I am so grateful for your advice. Rhuematologist discharged me to GP but they are so busy! I was ok on 15 mg and on 10mg. But when I reduced to 8, thats when my symptoms returned big time. 10% is great advice thank you. I have taken 9mg today and what a difference. Walked 6 miles. You have done well to get down to such a low dose.
Six mile walk - impressive! I count by steps, I'm afraid, so not sure what 10,000 adds up to in distance but that is always my goal.
if you're finding 9 mg is doing the trick stay there for a bit, some people would say as long as a month, and to be honest, below 10 mg that's a really good idea. I also found I needed to slow down at 10 mg, but I'd started at 15 and only tapered by 1 mg at a time, but it was 1 mg per week, so really amounted to the same thing, but without problems. For me 9 mg was a step too far and that's when I started using one of the slow taper plans they recommend on here (dead slow nearly stop).
Dear HeronNS thank you. 10,000 steps amounts to 5 miles so you're doing well. I am so grateful for your advice. Had no idea about steroid withdrawal symptoms. From all your advice seems I was too keen to reduce my dose hence all my symptoms returning. I was really good on 15 but struggling on 9. Will try 10 for a week and see if I buck up! Where do I find the slow taper plans please? Hope you are well today🌻
I believe they are now in our pinned posts on this page. The one I use is called Dead Slow Nearly Stop but there are a few others. The main thing they do is help you reduce comfortably and also help you find the lowest best dose to keep the symptoms controlled while you wait out the course of PMR. Mine has turned out to be about 2 mg where I stuck for over two years, but now seem to be (finally) successfully tapering to 1 mg after many cautious attempts.
healthunlocked.com/pmrgcauk...
It happened to be open on my computer 
I've just realized that while I've been sitting here, having gone to church, eaten breakfast in two parts (half before, half after church, including two mugs of tea) and chatting about prednisone, I have completely forgotten to take my own1 mg pred!
Wow!...did you say 6 miles? I can not walk 1/2 mile,...easily. I struggle with walking, my legs are weak. Fatigue is a problem, too. I was diagnosed in January...about 9 months ago. Started at 20 mg. Now on 5 mg. I am feeling well...except need to pace myself.....a lesson learned.
You have to start small to improve though! Find out for how long you can walk comfortably now. Then add a few minutes tomorrow and do that amount for a week, add another few mins if you think you have improved - and keep building up slowly. Take a pair of walking poles and that will help you feel steadier. You will be surprised how soon you realise you are able to walk much further than you are now. Don't hurry at first. But once you have a reasonable distance under your belt, keep an eye on the time and try to get that a bit lower.
And I mean "a few" minutes - if you walk out for so long and back the same way, walk outwards for an extra minute, that is 2 mins total. I could walk much further in total if I rested half way - we would walk to a restaurant for lunch and back. Or look for a circular walk where you know there are places you could rest on the way round. We can walk in a circle in our village with 3 versions that are different distances. After doing to the village and back I tried the shortest until I felt confident, then the next. From being able to manage maybe 300 yards each way I eventually got to all the way round the long walk which is probably the best part of a mile and a half. Then I worked on speed and got from 45mins plus a bit rest down to half an hour with no rest. At the start I was on crutches - and I carried them with me for quite a while in case I needed them. It was a great day when I went out without them!!!!
Thank you for the good advice. I have a perfect place to walk...a beautiful park on Lake Michigan....a circle with benches. It is about a mile around...I get winded about half way and my legs get tired....need to keep at it.
Hi Gary 6 miles on good days with a few rests. Makes me feel better overall. On bad days am a couch potato! I've always walked a lot so maybe have an advantage. You are doing well to be on 5mg. I would walk a little further every day- strengthen your legs and stop for a cuppa. You will soon build up strength. Plenty protein in the diet too🌻
Thanks...sounds like a plan. I think I try for 1 mile.....that would be an achievement . Do you walk “funny”? I dream of walking like I did pre-PMR. I wobble now.
Thought you might - and why I suggested the walking poles. They really do help.
The walking poles, especially the Nordic style, is a really good idea. Helps people maintain balance, helps you walk faster and develops upper body strength, as well as helping to maintain an upright posture.
Best to get instruction how to do it properly, then start off slow. It does take more energy than ambling along without.
Thanks..
OK....Decided to order a pair of Nordic walking poles today. Just checked them online and they look nice, not tall, sort of like ski poles.
If a walking group near you offers free classes, do go. Otherwise there are some pretty good instructional videos on line. I think some of them make it seem more complicated than it really is. Once you've caught onto the rhythm of it, it is fun and easy, only takes a few minutes. first thing you need to do is make sure the poles are adjusted to the right height for you.
Nordic poles are actually longer than ordinary walking poles but they should be adjustable anyway. The advantage of Nordic ones is it is easier to keep them in your hands because of the straps.
They will definitely help with both the tiredness , balance and the wobble.
The height and the way you use them make you walk with more stability but also better posture so it reduces the pain in the back and knees and your tiredness.
It also helps to exercise your arms and shoulders gently too.
And the look good !!!
My husband has no joint issues but tried out my pair and loved them so has a pair of his own now.
It doesn't take long to get the knack with them and after a while you will wonder how you managed without them.
Thank you....is there a particular brand name walking stick? Any feature I should look for?
Hi Gary Black Diamond and Leki but expensive. I would ask for advice at your nearest outdoor shop.
I usually go for a brand name but on this occasion I actually thought I'd try out a well reviewed pair from the big online shop in the sky beginning with A of a cheaper sum in case I didn't get on well with them .
Lots of photos of real walkers up snowy mountains using them !
The pair I got were only £20 , nice plain black , easy to adjust and light .
Called The Fit Life. They have done me well so far .
Depends on how much you have available to spend , I think someone else on the forum has the same type.
When you are used to them you could always join a club and get advice for your next pair later.
Thanks....I am not going to do competitive walking....not sure how much I’ll use them so an inexpensive pair would work for me, too.
To be honest , there were loads of regular Mountain walker's giving them reviews that said that they were very sturdy and were much better than the mid range sticks they had bought previously.
Sometimes , I do buy the " best" , but sometimes with care and a bit of research you can find a product that does virtually the same job without your credit card suffering a , " Flare" !!😋😂😂😂
Good luck with it
I only walk funny when I've had too much wine. Ha ha. Yes I struggle to walk normally - not as much energy and strength but try to work through it to keep muscle strength. Poles ideal to help you along. Lots of serious walkers use them. Plenty of water in a rucksack too to keep yoi hydrated.🌻
Gary I think you have tapered a bit too quickly. I started on 15mg and 18 months later was still on 6mg. Struggled to get below so rheumy added methotextrate to the mix and I've managed to get to 2mg in nine months. Still some niggles but I blame the weather and arthritis for a lot of that and I'm able to do what I need to so that's fine. Rheumy is leaving it me for six months now but with a blood test at three months to check all is well with liver. Well done with walking. I go ballroom dancing for exercise and the social side of it too.
I started at 20 mg last January. My Rheumatologist is pleased with my progress. I will stay on 5mg for Sept... 4mg for Oct......3mg for Nov. etc.
I had been reducing every 2 weeks..now every month so he has slowed my taper. I have confidence in his treatment. I think it takes time for the body to heal.
Well done.
I used to walk 6 miles, haven't been able to do that yet, 2/3 miles are enough right now. I couldn't reduce from 10 mg to 8 mg even tough my reduction from 20 mg was uneventful. My Rheumy said to reduce from 10 to 8 because he thought I had "a mild case of PMR". I was skeptical but tried it, after all he's the doctor. I had the worst flair ever. So I went back to 10 mg and slowly (.25 mg at a time) reduced with the slow reduction suggested here. I never had a flair again and I'm down to 4 mg and have had PMR for 3.5 years and have been on Pred for 3 years. It takes years to come back to a sort of normal. My advice is go as slow as possible and stay with your Rheumy if you can. Mine also does blood work every 3 months and if I still had inflammation stops me from reducing.
I wish someone would explain what they mean by and their evidence for "a mild case of PMR"!!! I managed to live with mine for a long time and 15mg achieved a miracle in under 6 hours. But I wouldn't describe something that has lasted 15 years without apparent respite as mild ...
Thank you Kulina. I can equate with your struggles to get below 10mg. Its wonderful that you're down to 4mg. Well done. Do you reduce by .25 every month? Where do I find the reduction advice please on here?Am new to all this. But I'm so glad I found you all. I was discharged after first visit to Rheumatplogist! Back to GP. I think I need to insist on another referral. Strange thing is all my bloods normal! Inc CRP.? 🌹
This one option:
healthunlocked.com/pmrgcauk...
but there is a post with a few together under the Pinned Posts I think.
DorsetLadyPMRGCAuk volunteer
Hi,
I can understand (although maybe not totally agree with) the drop from 30mg to 15mg - which incidentally is the normal starting dose for PMR.
However the tapering regime since is not good, many struggle to go 15-12.5-10mg in stages let alone in one fell swoop.
I would suggest that by reducing from 15mg to 10mg in one step you have passed the amount you actually need, but unfortunately you have no way of knowing what that figure was/is!
As HeronNS asks - How long were you on 10mg? And did you feel okay?
If you were, I would suggest going back to that - for 4 weeks, and then reduce more sensibly - 1mg every month, or even 1mg every 2 months - as recommended in the guidelines.
Six months in, your PMR is still very much alive, so there is no point in rushing your taper - as you have already discovered.
Dear Dorset Lady (I have friends in lovely Sherborne) thank you so much. Hope you are doing well? I have honestly been 'left to it' by medics and so just experimenting! So glad to be on this site. I was ok on 10mg. Was on 10mg for a month then reduced to 9 then 8. But symptoms got me last 2 weeks. So am back up to 9mg and even 1 mg more feeling a lot better. I will take your advice before I reduce again. Its a year since I got PMR. I just dont understand what causes it? Hot summer, stress, virus? Hope you are ok
Me- good at the moment thanks.
Nobody know real cause of PMR - but stress, whether it be physical from an operation, illness m accident or virus are often muted - and mental stress for sure is a contender. If you ask most people on here, they will say they were under stress prior to the outset of PMR and/or GCA.
For a slightly less scientific and tongue in cheek answer you might like to view this -
healthunlocked.com/pmrgcauk...
Yes Sherborne is lovely, my son is hoping to buy a house on the outskirts - his children have just started school there!
Dear Dorset Lady glad you are doing well. I am not good today on 9mg so will try 10 mg and see if I improve. I see what you mean. I have missed the correct dose for me by tapering in big steps. Hopefully will feel better with 10mg. and then will reduce by 10% every month. My twin brother had a gene test and surprised to see Scandinavian origins and grandfather Armenian. Grandmother had polymyalgia. Is is hereditary. Broke my ankle in Cornwall 6 months prior to waking up with PMR and controlling (ex) relationship so yes a stressful time leading up to diagnosis. 🌻
Is it hereditary? Well maybe not proven like some illnesses - coronary issues or arthritis - but there are many on here who said a member of their family had/has PMR or GCA.
In my case - cannot find any family trait!
To be honest I think most of us of European background have a Viking connection - even if it’s only a very small percentage.
Hope the increase in Pred sorts out your issues.
My family originated in Germany, Switzerland and France. All came to the US at the turn of the last century. No PMR that I am aware of. Three of us ladies went to the beach for the winter of 17/18. We stayed at different places but met for lunch, short trips, etc. Ann was diagnosed with PMR in May, I was diagnosed with PMR in January s and Gayle has had GCA symptoms since March.......had biopsies, both negative. Seems like a virus connection to me.....I understand that is not a consensus,........
Unfortunately no one can say 100% what is the cause.
But many things - like a virus - can be the straw that broke the camel’s back - but that’s not to say it wasn’t already lurking just waiting to be ignited!
One of life’s imponderables!
What is so great about this blog.........information from many sources. The Medical community can learn from our experiences.
PMRproAmbassador
It took me 4 years of steroids (a total of 9 years of PMR) to reliably get under 10mg.
Every morning a new batch of inflammatory substances is shed in the body. The dose you are aiming for when tapering is the lowest dose that gives you the same result as the starting dose and which mops up the inflammation caused each day. However you reduce - whether it is 10% or more or less, nothing will get you to lower than that dose although smaller steps do seem to allow you to creep down, sneaking under the radar!
You have got there - for now. Wait a few months at 9mg and then try a 1/2mg reduction - it might work and then you can try another. But don't force it and don't be despondent because it is only a temporary blip if you are sensible. But if you try to force it, you will let in a proper flare up and you will be heading back where you started and have to do it again. Often that is harder - and you don't want to go there.
I'll go into the causes another time - suffice it to say your immune system has been attacked and has flipped out. It may be one massive attack or it may be a load of straws and one finally broke the camel's back, But it wasn't your fault - or anyone else's. It is what it is ...
Thank you. I will heed all the caring advice given. I think I have missed the boat and have a big flare up. But will try 10mg. If thats too low, should I go back up to 15. Thank goodness I found this site. I feel like I have a new family. A 'temporary blip' gives me hope thank you 🌹
A few days at 15mg may be enough to clear things out and then you can manage well on less - you can take 15 for 7-10 days and then drop to 10mg without much bother - PROVIDING that 10mg is enough for the daily delivery of inflammation.
Thank you. I will start on 15 mg tomorrow for a week to clear out the critters! Is it ok to try 10mg then or decrease slowly. Thanks for your help. 🌹
No, after a week or so it is fine to drop back down without a taper. Although you do need to be sure that 10mg is still enough. It should be if you were OK at 10mg before but it does depend how long you gave it then. It sounds as if it is trying to get below 9mg that leaves you in a state?
Hi Gumnut. Many of our community have said they think physical and / or emmotional trauma (bereavement) played a part in triggering their PMR.
Hi Marilyn yes broke my ankle prior to PMR. A 6 month recovery from that and unhappy controlling relationship and being unsettled. But thankfully in a better place now. Just need to get on top of these synptoms🤕
As the others have said your taper eventually was too much and too quickly.
If you felt fine at 10 mg , you could increase to that figure , get your feeling of " wellness" and a little strength back then use the slow taper that all the members have suggested so far.
The tortoise wins the race rather than the Hare with PMR .
I see you are like many of us and struggling with trying to work out why it all happened.
Many have mentioned Stress , but did you know that Stress is not all bad but good things too.
I wrote a post about it last week that you might find below you search for answers to the Big Why ? in a different way.
If you press on my avatar and name at the top of this reply , it will take you to my profile page and it's the first post you will see , I hope it helps.
Take care and take it slow , hugs , Bee x
Dear Bee I read your very interesting and mindful post on 'stress' and its so true. There is good stress too. But its all a balance. I now realise I was a genetically predisposed Viking with a big dose of physical and mental stress before waking up one morning in Cornwall with aching shoulders and hips and feeling fatigued and depressed! And here I am! Thanks for your advice. I will revert to 'Tortoise' mode and hope I will win the race🐢. Hope you are doing well. x
Also bear in mind that when you drop, even by a little, you can experience several days of pain from the steroid withdrawal. For me that usually lasts 4 days. Then it eases up. You may also find that you need to slow down a bit with activity. It’s easy to think we are all better and overdo it when we still have the underlying condition. I too was very active prior to my dx and have had to very slowly add activity back.
Thank you Cranberry. You are you to have a dx of PMR and sorry it has affected your life but its a temporary blip and we'll all get there. What dose are you on now? Do you still exercise. I only walk on days I am able. But it does improve my wellbeing. I've always been on the move but learning to chill out! Have you ever had improvement with natural anti inflammatories like ginger/Manuka/turmeric. 🌻
Hello Gumnut,
Sorry to meet you here....not where you'd really want to be.
However, it's a fantastic place as you've discovered.
I have nothing to add to the amazing advice you've already had.
I am currently stuck at 8mg x6 +7.5 x1 after horrible things a few weeks back.
Monthly blood test results due tomorrow and I suspect I'll be staying at this dose.
Bon courage as they say here in France.
Oh and walking poles, I have some AND I find my shepherds crook much better for me.
Bon nuit Ida'mum. Lovely to hear from you. Not the place any of us want to be but at least PMR is treatable and hopefully shortlived unlike some diseases. I hope your present dose pf Pred is keeping you symptom free. I have learnt very quickly thats its imperative to reduce very gradually and that is the only way to go. As well as rest! Of course I had no idea doses can differ on days a week to reduce at snails pace. I have not had much guidance from my GP.
Bon chance demain. 🐴🌹
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