Hi, I've recently been diagnosed with PMR at aged 51. I think it came on really slowly over the course of several months, firstly just in my neck and then come January it spread to my shoulders and arms really quickly and was very disabling. March I was put on prednisolone 15mg for a month which was then reduced to 12.5mg for a month and it has now been reduced to 10mg. The Pred has worked really well although the pain has never completely gone away it has gone mostly and I got my life back. However, I have reduced to 10mg in the last few days and I am noticing that the pain has increased. It is not disabling in the same way as it was, but it is noticeably painful, particularly in the evening. Will my body adjust or do I need to up the dosage back to 12.5mg? I was also told that this condition would eventually go away and be "cured", but reading some of these forums, I wonder whether it will? Also has anyone managed to control the dreaded weight gain on prednisolone? I needed to lose about a stone and half before I started on it - I now need to lose considerably more! I am so new to this and would be so grateful for any advice.
Recently Diagnosed with PMR - Looking for some ad... - PMRGCAuk
Recently Diagnosed with PMR - Looking for some advice
If you are getting pain problems you have dropped too low. It is never worth trying to bear it out at a particular dose. You need to increase to where you were last happy and bang the PMR on the head for say a week or so and ensure you feel comfortable. It is then better to drop in smaller amounts. Most people do not get to 100% pain free, just a lucky few. If you are at least 70% that is considered OK, but you should not be worse than when you started on the steroids.
PMR normally goes into remission, it is still in the body and can come back but hopefully will not. It normally takes at least two years for remission, although it can be less, but the average is in fact 5.9 years.
It is a good idea to try and reduce carbs while on steroids and go for a low carb diet.
Your doctor should also have prescribed you with vitamin D with calcium and booked you in for a Dexascan to measure your bone density. This is because of the steroids. They can reduce your bone density.
Hello. I too am new to PMR and the site. Just recently diagnosed at age 55. This site is such a wealth of info. I am currently on 11mg and with a walk everyday and eating fruits and veggies with minimum meat I am able to keep the weight down. Good luck. Look forward to comparing journeys.
If you are not eating much meat, make sure your protein intake is good in other ways because Pred affects protein metabolism. I started on 60mg and didn’t put on weight and kept my blood sugars stable by cutting out all potato, rice, pasta, maize, flours etc. I ate a lot of meat and what fruit I ate was mostly berries. It’s the carbohydrates that are important to cut because Pred affects the way the liver metabolises it’s glucagon. Also, low salt helps stop fluid retention.
I agree with Piglette. Does sound as though your taper has been pretty quick. Medics often want a quick reduction but often our bodies don't! As a long timer, I would put my frequent flares in the early days down to trying to taper too quickly. Quality of life is all and pacing yourself is an art, but necessary. There is loads on here about diet. The sooner you can control the carbs the easier it will be , especially if you end up on pred a long time.
Loads of help and support here. Good luck.
I am a very recent diagnosis aged 58. Still on 15mg steroid which is doing a great job so far. I had already been dieting for months and have shifted most of my excess weight. I am determined not to put it back on. Trying to ease my way into a lower carb lifestyle. Good luck with whatever decision you make about the meds. My rheumatologist sounds brutally determined to get my dose down.
I was diagnosed with PMR 1/4/2019, started on 15mg and was basically told to come down 1mg every 2 weeks. After 15 months and countless flares, yoyoing up and down, plus Covid lockdowns I was sick of the whole thing!
I found this forum and have used Dorset Lady's 5 week tapering plan for 11 months. I have been struggling lately to go below 6mg. Phoned the doctor's surgery recently and finished up getting to see a doctor. He gave me a full examination, took bloods etc and advised me to stay on the 6mg for 4 weeks, then get more bloods done which I did yesterday.
I feel better than I have done for a heck of a long time. Hopefully will reduce dosage a bit more soon.
Morning, sorry l’m not properly awake yet but hers a list of our FAQ in which you’ll find Posts on Weight Management & Low Carb eating. healthunlocked.com/pmrgcauk...
Kind Regards
MrsN
PS l think you taper may have been a bit rapid as piglette has explained.
Hi and welcome,
Have a look through this for general info - healthunlocked.com/pmrgcauk...
and then spend some time on looking through the FAQs….
healthunlocked.com/pmrgcauk...
Any specific question, just ask..,and yes probably wise to go back to 12.5mg and then reduce by 1mg a time…
Seem to be a few of us here in our 50's. 56 when diagnosed last summer. Pandemic lockdown stress i reckon. I am kind of thinking that being younger might make us better able to cope, but that might be wishful thinking.
15 to12.5 to 10 and then 1mg per month thereafter seems to be a default position for some rheumys. Didn't work for me around the 9-10 level, so had to go back up a bit. Now drop 0.5 per month which seems to be working ok..ish. Mind you i dropped from 7 to 6.5 last night and woke up with very stiff and sore left hip.
Always takes a day or two after a drop i find.
Weight gain not a given. I think i actually lost some. No idea why.
You have to keep moving i find, but repetitive or strenuous exercise is problematic. Tends to get you about 24 hours later.
Good luck. This forum is v helpful and supportive.
I’m fairly new too and tried to taper like you …thinking I felt pretty good and apparently I can get off the Pred in 12 months 🤣🤣🤣(Doctor said It can go into remission 🤣🤣🤣😢😢😢😢) It hurt when I tripped to reduce the Pred I was in pain so I re-read the info here and asked for advice and actually had to go back up a few mg and start the taper again…now I have slowly, very slowly come down to 10.5 using the dead slow non stop taper (In the files here) and in a week I will slowly try to begin to work toward 10mg.
I was lucky I asked for advice and got it here straight away. My Doc is good but he doesn’t have this disease and he hasn’t actually tapered prednisone. The collective wisdom of the people on this forum is invaluable. I have read and reread the info in the files and I am still learning (I’m a bit slow 😋) …this forum is your best place to ask questions and get ideas and answers.
FYI I stopped eating sugar and carbs and lost 2 kg in 2 months and slowly continuing down. I am managing to work and do gentle exercise but some days I sweat like I have a weird fever and often I’m so tired I just have to go to bed and sleep. I have never been sick or weak until now. This disease has scared me into changing my lifestyle. I have just turned 59. All the best to you and well done for getting on to this site so quickly . Keep us posted with your progress, wishing you well xx
It does go into remission (in the vast majority of cases) - but in its own time... and no-one can tell you when that might be ...
Thanks for all the comments here - they are really super helpful. I will give it a couple more days and if the pain doesn't settle I will see if I can go up to 12.5mg again and reduce more slowly. I will also make sure I stay away from the carbs (so very very difficult), or at least reduce! I have tried to cut salt down as I used to eat a lot of salt, so hopefully small changes will keep weight at bay. Other than that the pred has been quite good - it has made me more hyper and given me more energy and put me in a better mood. No idea what it is doing to my internals though!
Hi, Like you I was early fifties when I was diagnosed with PMR. After being very stubborn and doing all I could to avoid steroids; I gave in and have felt a new person since. I actually didn’t put weight on as I cut down on carbs but didn’t ‘diet’.
Having started on around 21g, I am now on 4mg daily.
Because of lockdown I have like so many people put on a bit of weight but my fault as drinking too much! I try and do about 10-15,000 steps a day and any other exercise on top where possible. Best of luck; I’m really hoping it will go into remission for me soon.
Your story is almost the same as mine - a slow onset at 51. I got a really good response to 15mg - intitially I got to 10mg with no problems but it was part of a 6 week taper and stop and that allowed a flare of symptoms to develop that was difficult to get under control and it also made 10mg no longer enough - of course, it could have been that the disease activity increased in that time - as it has with later flares.
If the pain has increased it is a sign you need slightly more pred for now - it doesn't mean you won't get lower, just not yet. You are never reducing relentlessly to zero - you are looking for the lowest effective dose. That will be higher early in the disease and over time the dose you need will get lower.
The other question is - have you tried to return to normal activity levels? The pred has cured nothing, it is a management strategy for the inflammation to allow a better quality of life in the meantime. The actual disease is still active in the background, making your muscles intolerant of acute exercise - you will develop DOMS (delayed onset muscle soreness) much more easily and it will last a lot longer if you don't rest to allow it to resolve. Are you still working? That always makes it harder.
Weight management on pred: cut your carbs, especially processed ones. It really does work although it will be slower weight loss than you'd expect if you weren't on pred.
Thanks for your really helpful post. I am working so not able to get that much exercise during the week - although I try to park 20 mins from work so get a brisk walk twice a day! However am isolating at the moment so getting no exercise whatsoever and boredom eating has set in! However, I have not had it in my hips which has been a blessing so any lower half excersise like running should still be ok (apart from a dodgy knee and back trouble - but that's another story!). Interesting what you have said re the pred managing the inflammation. I was aware of that - but you have set it out very clearly. I suppose it is a bit like using air-freshener when you have a dead mouse under the floor boards! I think one of the main things I have taken from all the advice is that very slow and steady wins the race. So I think I will perhaps suggest to my doc that perhaps I reduce 0.5mg every 4 weeks instead of 1 mg and see how we go with that. It's also good to hear other "younger" people getting it as I felt like I was a rareity! Average onset I believe is 74 and virtually unheard of in people under 50!
" I suppose it is a bit like using air-freshener when you have a dead mouse under the floor boards"Love it - well, not really but you know what I mean!!!!
But since there is a very high incidence in over 70s, there also needs to be a fair number UNDER 70 to keep that average down to 72. Plus, that is at diagnosis - many younger patients aren't diagnosed for a long time - it took 5 years for me in my 50s to get a label - and a lot of older patients also don;t get a label because they are assured it is "just" old age. A lot of younger patients with PMR also find the age card played against them, it's women "of a certain age"!
Depends a bit on the dose - above 10mg 1mg at a time should be fine, especially using one of our slowed taper approaaches. If that doesn't work, slow down further.
Hello, my story is practically identical to yours except I'm ten years older! Started on 20mg and managed to reduce down to 12.5mg without too much bother, except for a few twinges for 2-3 days every time the dose was dropped. But once I got down to 10mg, the pain became worse and after over a week of shoulder, neck and hip pain, I've gone back up to 12.5. I've only recently discovered the forum and have this week, thanks to advice here, started on a low(er) carb diet in an attempt to lose some of the weight I've put on (2 stone during lockdown and 12lbs since steroids!). So far, so good, quite enjoying the change in diet to be honest. 😀
Oh good luck with that. The weight gain is so disheartening and doesn't help that I'm at that time in my life when it suddenly gets harder anyway! Coupled with my general lack of self-discipline and love of food and wine - it's not great! I will see how pain goes next few days. It has been better today but who knows tomorrow! So glad to have found this forum - there has been so much great advice.
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