Hi I just wanted to tell everyone that you can finally be free of polymyalgia.I was diagnosed in 2020 and it was horrendous. The pain was terrible but it took my GP a few months to finally decide I had polymyalgia.
I was put on steroids and it was a light bulb moment for me as within hours most of the pains had gone.
My GP did not really understand polymyalgia unfortunately so was going by the rule book as far as reducing prednisolone which did not work for me as it was far too quick but thanks to Healthunlocked I took the advice on tapering from people who knew what I was going through.
My GP eventually realised I was doing it my own way so just gave me prescriptions when I needed them.
I used the tapering guide and advice from the wonderful people on this website. 3 years on I have stopped the steroids and am free of polymyalgia.
I am hopeful that it won't come back but I still receive emails from Healthunlocked and will certainly use the website again as it certainly helped me understand the illness and I wouldn't have been able to taper as well without the help of these wonderful people. I pray that everyone becomes free of polymyalgia but I know I'm one of the lucky ones.
Thank you Healthunlocked ❤️
Written by
Rosshigh
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Long may it last! Don’t forget to keep Pred on you when you leave the house for a year just in case your adrenal glands forget they now have a full time job.
Congratulations you must be relieved .I am just at the beginning of my journey and beginning to start the tapering process. Just reduced form 12.5 to 10 this morning and already feeling affects.I guess it takes a couple of days to settle
But don’t let it go on too long or you’ll need to increase dose - and whilst 12.5mg to 10mg is in guidelines, not everyone can manage it… so just be aware. As you did have a bit of an issue at the start looking at your first post, be mindful.
Thanks for your comments and help. I was thinking of taking your previous advice of not reducing by more than 10% at this stage . Does that sound sensible ?
I got to zero Pred last September after three attempts. Since then I have had 2 flares which I have killed by short 3-day bursts of 30mg, in and out. Doctor thinks it’s a good plan but says if I get more than a couple in a month I will have to go back on the ghastly stuff. Best news is I have lost a ton of weight.
How strange I too have left shoulder pain that I think is Rotator Cuff. Probably had it for years and the Pred had been hiding it. Not made any better by just moving and dragging furniture and heavy boxes.
Since then I have had 2 flares which I have killed by short 3-day bursts of 30mg, in and out. Doctor thinks it’s a good plan but says if I get more than a couple in a month I will have to go back on the ghastly stuff
Not really the ideal way to approach PMR - sounds as if your underlying illness is still there, and all you are doing is giving the inflammation time to build back up again between the short bursts of Pred. Agree with doctor, you may well need to go back on it… and even a small dose may be sufficient to deal with it…and if you cut your carbs there is no reason to gain weight.
Looking at profile, you do seem to have a persistent form of PMR..so I can understand you are fed up with it… but if it’s still there it needs to be controlled properly.
You do realise that 3 days of 30mg is more pred than if you remained at 1mg pred long term? And probably the 1mg has fewer adverse effects, Many people find that 1 or even 1/2mg is enough to keep a low level of disease activity under wraps.
Congratulations on getting pred free. What is the tapering guide/advice? I am down to 9mg a day and want to taper down 1mg a fortnight or 1 mg a month if possible.
It’s referred to as DSNS and is probably in the FAQ section. Stands for dead slow nearly stop. Devised by a clinician. Basically when you feel ready to try reducing , ie current dose is doing the job, you cut by 1 mg for one day of the week then back to usual dose for the rest of the week. Week 2 reduce by 1 mg for 2 days of that week etc.
when you get to a low dose do the same but 1/2 mg. Etc.
The DSNS taper wasn't devised by a clinician, it was devised by me together with another patient who had used something similar below 5mg when he struggled. It has been approved by Prof Sarah Mackie, a UK PMR expert, who used it in a clinical study she was doing some years ago,
What you describe there though is not the DSNS taper, it is DL's easy taper.
See links for options we suggest- devised by patients - decide which is best for you.
You need a monthly taper at the very least- any quicker is too hasty. It can take at least 2 weeks to know current dose is sufficient- and you don’t want to reduce if it isn’t.
1mg a month may be okay initially , but many find that once below 5mg it’s better to reduce by 0.5mg a time.
Dorset Lady will advise better than me but once you're below 10mg it's a case of 0.5mg a month and sometimes 6 weeks depending on pain. It is frustrating but patience is the answer.
1mg a month is possibly OK at 10mg, by the time you get to 5mg that is already 10% and far better to switch to 1/2mg steps - and even better over longer than a month. It isn't what you want to do - it is what your body and PMR will LET you do. They call the shots.
great news. I managed 3 months then had a flare after a too vigorous physio appt. Back to tapering! Did you try anything else other than tapering which might have helped ?
Not really to be honest. Used Dorset Lady's tapering plan but just did it very very slowly 0.5mg every month and if I felt any pain I kept going at that for another few weeks. It's frustrating but patience is the key.
I was diagnosed May 2022 and took my last pred mid April 2024. So far so good, I do have arthritus pain but can separate that from the pmr but hope to at some point speak to rhuemy and get a blood test to confirm.
Thats so good to hear. I was diagnosed in 2019 and have been pred free for 3 months now. My story is remarkably similar. The only way was to go the DSNS route, my doctor was as yours, not very informed and this site was a game changer. I told my doctor I was going very slow but would be off the pred eventually. She was happy to let me take charge and other than a couple of flares early in my illness it has been a gradual .5mg reduction every 8 weeks for 2 years and more. Now I feel so happy to be off the pred, if only I can get off the omaprazole! I still need one once a week buy slowly slowly, I will be off them as well.
Well done you. This site is the best thing I ever found as no one understands but people who are going through it. I am still on lansoprazole but that's for a different thing. Onwards and upwards for you 🤞
That’s great news, thanks for sharing and giving us hope. I agree this site is the best source of information and support, as everyone on here knows what we’re going through. All the very best to you, long may it continue 🤞
Such encouraging news Rosshigh. Your path seems similar to mine. I was diagnosed with PMR in May 2021. Thanks to the advice and excellent guidance on this forum, which I read every morning, I am nearly down to 3.5mg. I have stuck rigidly to D.L's (thank you)14 week taper and always look forward to reading PMRPRO's responses. My doctor just let's me get on with it, saying that 'you know your body better than anybody'. I am able to order Gastro-coated Prednisolone and feel confident that by the New Year I will be Pred and PMR free....a time for celebration 🍾. I am very grateful to everyone on this site...definitely a life-line and game changer!
Woo hoo! So pleased for you, your post will have given many people much-needed hope that for most people, PMR does eventually burn itself out. Do hang around, at least from time to time, to inspire people when they are struggling. And also let your GP know how helpful this forum and the charity were in supporting you and that it's there for others who get PMR or GCA
I will check in from time to time and did tell my gp about the charity and website. I have passed on the information to a few people already so all good.
I exact same thing happened to me in 2018. My doctor knew nothing about PMR but I took him a printout page of this site on the second visit and he googled it right there in his office. Like you he wanted me off pred as fast as possible but I held fast to the reducing protocol and he eventually let me get the pred I needed. I got down to 1mg after 4 yrs and then 0 in 2002. I have no pred since, but I still get slight shoulder pain and neck pain on occasions and take a couple of aspirin and that helps a lot. I’m 73 and in good shape, so this is all a blessing. I wish you the best with your journey in life and hope for you a pain free future. I am originally from England but lived in the US since 1978, and my grandmother back in the 50’s had some strange illness that put her in a wheelchair. I believe it was PMR but she had no pred or her doctor didn’t give her any, I don’t know, but thank God they gave it to me.
me too! 2. 5 years on prednisone, slow taper. But after a year I went on a healthy diet to strengthen my immune system….it worked! Here’s a picture of what I have for breakfast. I have a great Vitamix machine that mixes it all together.. I add berries, half a lemon including skin (skin has most nutrients) and half a green apple (lowest in sugar), and sometimes half banana….mix it all together n a good blender….add water and ice…it got me healthy and off prednisone
It’s been 5 months and doing great. My legs are still weak since I couldn’t exercise for two years, but I’m building strength slowly…
how wonderful for you Rosshigh! I’m down to 1/2 mg of prednisone a day and my old aches and pains have returned but I’m not feeling PMR pain. It’s great to hear it is possible to get completely off prednisone!!
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