Have had PMR for approx 2.5 years. Took ages to get diagnosed and started on treatment due to Covid restrictions, and busy GP and Rheumatologist. Been on prednisolone for one full year. Started on 15 mgs, with a blip around 7mgs which meant going backwards for 2months! Worked hard to get to my current 5 mgs, but not feeling 100%, aching pelvic girdle again, neck pain, fatigue and low mood. Can other sufferers give me advice please? I want to get my dose reduced as soon as I can because of bad side effects of steroids, but its such a balancing act with the symptoms returning. How long do people stay on a dosage before trying to bring it down? I notice on other posts that some people take .5mgs( eg 3.5) Can these be prescribed?
New Member seeking advice on tapering down steroids - PMRGCAuk
New Member seeking advice on tapering down steroids
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LeonardCohen
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DorsetLadyPMRGCAuk volunteer
You may want to reduce Pred asap, but unfortunately it doesn't work like that - if only! You need what your illness needs -
Suggest you try one of the slower tapering plans - here -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
..and no you cannot get 0.5mg tablets, but you can cut plain white 1mg in half (but not the enteric coated ones) - other option is to mix and match if you have 2.5mg and 1mg varieties.
You might also like to look at this link re adrenals -as they may be part of the issue as well at the level you are at now -
healthunlocked.com/pmrgcauk...
You may also like to have a look at this - if you haven't seen it before - albeit you aren't that new - but it may give you a better feel for you treatment, length of illness etc--
healthunlocked.com/pmrgcauk...
The h is missing in the final link - doesn't work as a link
cheers -too much of a rush 🤦🏻♀️
Thank you so much for your helpful reply and links to the slow tapering plan, and info about adrenal glands. This is a revelation to me, and none of these issues have been explained to me by doctors. The info even explains a lot about my current difficulties in coping with stressful situations, due to cortisol levels and adrenal issues. I think I’ve been feeling under pressure to reduce the Pred too quickly. Your links and advice have helped me realise this has to be a much slower process , for several reasons. Thank you
and none of these issues have been explained to me by doctors.
That sounds about right….good we patients or ex-patients are about! 🤣😂..
—and yes they do pressure to reduce too quickly in many cases -mine didn’t and I know I was very lucky in that.
PS -I’m guessing you’re a fan of LC -did you see recent documentary on sky? Have yet to catch up with it, following recommendation
Think my head/brain??? Is somewhere else, it's taken me 5 minutes to work out LC!!!
Never mind -have sit down and a cup of tea, you’ll get over it 😂🤣
..maybe Lost Cause? Last Chance? 😳
Low Carb.
Yep!
Massive lifelong devotee of Leonard Cohen. Didn’t realise his name was going to be used as my ‘profile’ ! Yes I’ve seen the beautiful film about how the song ‘ Hallelujah’ came about. Highly recommend.
I think part of my difficulties in getting any help with my PMR, is the state of the NHS and GP service in particular. I’ve not been getting any follow up or advice, even about my dosage of Pred. I’m having to instigate my own enquiries.
Oh I doubt it - most of us here had similar experiences and in some cases that was a long time before the NHS imploded ...
Some of us have been very lucky but think there are many here who have had/do have the same problem with their clinicians.
Dance Me ( the live version ) is my favourite. It should be used on Strictly for the Argentine Tango .
I love Leonard Cohen's music too - especially Hallelujah but I've not seen the film. I have a supportive and caring GP but the information and help from everyone here is just so much more... Take care and hope your tapering goes well.
When Bob Dylan got the Nobel I was shocked. Thought it should have been Cohen (if they were going to award a Nobel prize for literature to a singer poet) who, sadly, died not long after.
I agree. Love Dylan too, but no one can beat Cohen’s lyrics for their poetry. He’s a master wordsmith in my view.
Thanks for responding. Stay well , HeronNS.
Lovely for someone left in the dark like this to find this amazing site crammed with information based on shared experience and giving such practical help. Thank you and Pro and everyone who give up their time so generously. Never taken for granted! 👍❤️
The "doctors" comment surprises me not. Had I not been sent the link for this forum, I would have been a fish out of water for the last year and half. "My rheumy" whom I can never reach is a "let's get down to 5 mg. asap" as if it was a feather in HER cap to do so. I do the slow taper. It's not her experiencing the pain that comes with PMR, flaring, tapering, etc. nor is it a GP doing so. Also had a GCA scare in February 2023, which bumped me up to 60 mg. Pred. Currently reducing as all the tests were "negative" but keeping a close watch on my symptoms. Now at 45 mg. Ugh. All the best to you.
Good morning Dorset LadyI have been using your 5 week taper that you kindly emailed me a year ago. I am now down to the taper from 7.5 to 6 but after reading PMRpro's post, I am wondering if I should do the 7 week taper. If so, please could you email the excel chart for 7 weeks. The 5 week one has been great in keeping me on track.
Thank you in anticipation, and thank you for the wealth of information and support you Pros and experts give ... you are a bloomin life line.
Pondweed (aka Elodia)
Post edited to remove email address. Pondweed, please use chat if you wish to share email addresses. It's for your security as this is a public forum.
Please DON'T put your email address on the open forum, it is social media, would you put your email on Facebook? Use the Chat function to send that sort of info.
Thanks PMRpro. Am I able to delete my reply to Dorset Lady?
as PMR says please don’t put email on open forum -have copied it though …
PS - original excel document did contain all versions
I am so sorry Dorset Lady.
have got it -will send shortly..
PMRproAmbassador
You may want to reduce the pred but you won't get any lower than the dose you are actually looking for when tapering: the lowest effective dose that gives the same symptom relief that you achieved with the starting dose. You are not reducing relentlessly to zero - you need pred as long as the underlying autoimmune disorder is active. You need to be on enough to control each daily new dose of inflammation and if you are aren't on enough all that will happen is that the left over inflammation will slowly build up until it reaches the level that causes you symptoms.
Thanks for that helpful explanation PMRpro. I’ve been trying to reduce Pred because of the extra health problems it’s brought me, but I can now understand better that my PMR inflammation cannot be rushed away. Just have to keep plodding on, and be much more aware of what my body is telling me.
What problems is the pred causing? Most of its effects can be mitigated or even avoided when you know how so tell us and we'll do our best
Extra Raised blood pressure ( which was already an issue for me) , weight gain, and blurring vision at times.
Are your eyes dry? Eye drops often help the blurring of it is intermittent
Weight - cut carbs drastically - especially processed carbs and added sugar and limit fruit, preferably stick to berries.
BP - just take a bit more whatever you are on
I've had all the problems at one point or another
Thanks to you all who have taken time to reply and offer advice. Your own experiences have certainly given me reassurance and support. I’ll keep in touch.
A tiny hint. You can repeat a tapering week. The slow taper is good but if I’m unsure of how it’s going I’ll repeat a week before getting onto the next one. Our dear old bodies really do their best with what we throw at them! So glad you’ve found the support you need on this site. 👍
The question and replies in this thread have brought together all the main points and basic information that anyone will find invaluable, sufferers and their families alike. A very succinct appraisal of PMR, steroid side effects and eating advice. The only other point I would add is the advice given on here in other threads to not go overboard with exercise and do too much - even a little can be too much!
I don’t know how others will view my theory but I feel there are many thousands more people suffering a low level (if there is such a thing) of PMR without it being severe enough to seek doctors advice. It’s taken a while to dawn on me that this is likely to be due to their high carb diet. Your referral to a build up of inflammation makes perfect sense.
It’s hard to change one’s eating habits after 70 odd years, but if we want to be rid of this problem we have to make an effort . I’m thinking particularly of my 91 year old mother who appears to be suffering what I can only describe as low level PMR. She has a slight frame despite her very high carb diet but would never take onboard a change in her diet, or my theory!
I’m just starting my very slow taper - 15mg down to 14mg (thanks to the advice of DL) and will make a concerted effort to have a better diet. I just need to find a resource I can refer to easily that helps me with low carb meal plans and recipes that appeal to me, my husband (and maybe even my mother!) and stick to it.
dietdoctor.com/low-carb/ket... website is often recommended.
You can find lots of information out there including joining low carb eating groups on this platform.
thank you. I must admit I am confused about what is the best thing to eat and what to avoid. Looking at the food items in the keto diet, there are peppers, carrots, root veg which I’ve read should be avoided if one is cut down on inflammatory foods. I know we should have a balanced diet but I’ve really got my knickers in a twist about all this. I could just do with a diet sheet with meal plans which includes the best things to eat and a list of things to avoid. There is so much conflicting information. Low carb diets often include tomatoes, peppers, root vegetable for instance which I’ve read are bad for PMR.
My original instinct after being diagnosed and offered steroids was to try and control PMR with diet alone. I didn’t take long for me to realise this wasn’t possible due to the severity of the pain, advice on here and my lack of success searching for a new suitable diet.
I think you are talking about the exclusion of the night shade family vegetables which is a hallmark of a very restrictive anti-inflammatory diet. Not the same as low carb or keto. Have a look at The Whals Protocol which is interesting for inflammatory conditions and a lot easier to stick to.
Thank you for this. I’m finding it hard to change my diet but this will be a starting point.
I find stage one easy and stage three possible - stage two was beyond me (too much meat and protein in general). You need to do what you can do while enjoying your food, otherwise, what is the point. I found her particular approach very doable.
The theory that the nightshades are pro-inflammatory is fairly controversial - and the truth is everyone is different. Some people find tomatoes don't agree with them while others find they help. I've tried leaving out most things at sometime or another and the only thing that is constant is that too many carbs/sugar is pro-inflammatory. Low carb most things are fine.
I've just posted about an article that touts very low carb as a pain-reliever in autoimmune disease.
Thanks for this additional advice about low carbs and low sugar diets. Like Lclmlbls, I will find it hard to change lifetime eating habits, but I know it has to be done for my overall well being.
Have a look at the reply I just wrote in this post, all about my theory about altering the gut microbiome so it prefers healthier foods 
just responding to the disagree here. To get to a point where it's 3.5mgs, in aware that the dosages come in 1mg, 2.5mgs and 5mgs. So to get 3.5mgs you would take 1x1mg and 1x2.5mgs = 3.5mgs.
My GP is most insistent that any flare-ups he wants to hear from me to discuss the next steps. I'm not to taper without medical advice.
Also a point to remember, this PMR could be with us for two years and more. We need too get there tapering right so as not to drop too quickly.
I'm seeing my GP every 6 weeks. I was diagnosed on 01/11/2022. I started on 15mgs and I'm now on 9mgs. Some twinges and aches but persevering untill I see GP in two weeks.
Hope some of this is helpful.
Good luck with everything.
So glad you've found this forum. There is fantastic advice to be found on here and I learned more from these people than any doctor or rheumatologist 😊
Welcome to the forum. Full of people happy to give sound advice and support. I have found it invaluable. I was already taking BP meds when I started Pred. BP went up for a few weeks but then back to 'normal'. Not everyone's the same though. Lovely to see Leonard Cohen here! I saw one of his last concerts in Manchester. Best concert I've ever been to. Good luck with your tapering.
Thanks so much for your good wishes in my PMR journey. I learnt more in one hour of sharing on this forum than I have done in 18-24 months since diagnosis, from either GP or Rheumatologist ( whose comment was that she doesn’t normally get PMR referred to her, only patients suffering from rheumatoid arthritis!)
I was at that same LC concert at Manchester Arena. Felt the same, best concert of my life, unforgettable. Bereft when he died 😪But the music and lyrics live on.
So glad you found this wonderful forum. I was lucky my GP recognised my very sudden and scary symptoms and was a great help to me in arranging regular blood tests and tapering advice. I have a feeling she had already found this forum and had another recent PMR patient. I was lucky enough to meet Leonard Cohen twice in 2007 and over 20 years made lots of friends from all over the world via an online forum, who still keep in touch and get together regularly.
Good luck with your journey
This is brilliant...when I decided to join this forum yesterday, it was for PMR support and advice, just didn’t expect to hear anecdotes from LCohen fans. How wonderful that you met the man himself in 2007! I saw him in concert in 1970 when I was just a teenager, and was smitten from that moment. His songs have been the backdrop to my life’s journey. My last concert was Manchester Arena a few months before his 80th birthday, such a privilege to even be in the same building as LC!
As a 14 year old in 1969 I was put on a train to London to stay with my newly married sister for Easter. I was bored, so went through their collection of LPs. I found 'Songs of LC' and never looked back. Never saw him though until that magical concert in 2013.
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