well this is interesting, my sister who also has PMR as well as me , has just returned from her rheumatologist consultation in London. She mentioned to the consultant that her sister , me . Has been struggling to reduce her steroids below 5 mgs for many years . The consultant said that they have many patients like this , but they no longer concerned with the patients getting below 7 mgs . That they feel this is a safe dose . I am now considering this , as I am so much better on this does and function well. At the moment I am back down to 4.5 mg , but feel dreadful, fatigued and sore over my hips and shoulders .
years of yo yo : well this is interesting, my... - PMRGCAuk
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Would there were more of him and his colleagues - and would they PLEASE publish and spread the word!!!!!!
Going to ask me sister for the consultants email , and sending me request for a private consultation. I need to feel better .
You do - there is no point in dragging yourself around in pain just to be on a lower dose of pred.
I would happily stay at 5 mg, but is it making my Osteoporosis worse year on year I wonder?
DorsetLadyPMRGCAuk volunteer
Another enlightened one… hurrah.
As for you… maybe back to a dose that gives you good QOL.
Seriously thinking of it after years of fighting to feel ok .
No point in feeling rubbish… if you need a slightly higher dose, you need a slightly higher dose.. in my view.
Perhaps I haven’t been taking Pred or suffering as long as some, but the yo-yo syndrome has been the very real difficulty! I struggle under 9mg, even using the very gradual taper schedule, and the most recent visit to the Rheumy, he suggested that it was unlikely I would ever free myself of the steroids, although he would rather I was able to reduce to 7mg or less! I seem to suffer minor cyclic relapses which steadily worsen as I dip under 9mg. My conclusion was that I should stick to 10mg from now on and weather the side effects and have an improved QoL. The level of Pred does cause significant changes to the insulin I have to inject, and the constant battle to maintain a reasonable blood sugar .
Sorry to hear that, but probably not helped by your quite quick taper first time around... very often a relapse makes everything much more difficult as you have discovered. Have you been prescribed MTX this time?
At least your rheumy seems sensible, but would agree with him that 7.5mg would be better than 10mg - if only for your diabetes.
Maybe, when you feel you want to give reducing another try - use my ultra long taper - takes 14 weeks, and try reducing by only 0.5mg a time...but don't pressure yourself to do it. Somewhen the time will be right -
healthunlocked.com/pmrgcauk...
I guess the multiple rapid tapering was never going to be helpful but I did follow the Rheumy’s advice in all cases. I’m still taking MTX at 15mg/week, which the Rheumy will reduce if I can drop below 7.5mg of Pred. I did use the taper that dropped 0.5mg per 7 weeks (the program you suggest?) during the last year, but the Rheumy suggested yet more gradual, as I suspect, you do! I might even be giving myself a psychological block at 9mg but my goal is to reduce, as I like to trek and free camp in the wilderness. I don’t need cross border issues (or added weight) that may occur for drugs that authority control can look rather askew! If I read the regulations correctly, Japan requires a special import licence for medications that I might need for 3 months of trekking in Hokkaido.
I wasn't suggesting you tapered of your own free will - and assumed following instructions... but that doesn't mean they are right for everyone.. as we hear so often on this forum.
My 14 week taper is just repeating each week from the 7 week one...but there is nothing to stop you making it a 21 week one! Whatever works... works 😊
Can't help on Japan and drugs, sorry
My apologies if I ‘read’ accusingly! I had little knowledge of these problems before they hit, and have always had the notion that the medics knew more than I, so followed whatever was instructed. I read this forum daily and realise that perhaps there are many misleading thoughts and that these problems aren’t so easy to understand. At the moment I am resolved to try a very gradual taper, as you suggest, but have tried to balance it with the idea of accepting the 9mg solid floor, if it is unlikely I can rid myself of Pred. It would appear a visit to the Japanese Embassy is in the predictable future! 
No apologies required.. and if your PMR needs 9mg, then it needs 9mg... might not be forever - but is for now..then so be it.
Enjoy Japanese Embassy... and any feedback might be useful for others thinking of travelling to Japan...
It appears that taking any form of meds into Japan is strictly regulated if you are staying more than 30 days (even vitamins). Import certificate’Yunyu Kakunin-sho has to be cleared before turning up on the border! Penalties for proscribed drugs even if prescribed by medics in the home country. 🤔
Not very user friendly then…🤨
I hit problems going below 5mg many years ago, turned out to be that my adrenals weren't coming back to life after being suppressed by Pred for so long. I vowed that if I ever get back to 5 I will stick there for ever and now you have given me hope that if say I can get down to 7 that's fine too. ATM I'm quite happy on 10 but my body grumbles at 9 so am happy to stay here a while, certainly until winter is over. So good to hear enlightenment is spreading amongst rheumatolgists. Also very interesting that you and your sister have it, I wonder if anybody is researching possible genetic links for PMR?
Well obviously there are - PMR/GCA isn't a hereditary disease but there are genes that predispose you to developing it, it is part of the Scandinavian heritage bit. ANd family members are likley to share
I've come across several people on here who've said 'I knew it was PMR because my mum/nan had it'. My mum was German, I wonder if I've got some viking genes. I was in the 100,00 genomes project and they think the rare variation of RP (Retinitis Pigmentosa) I have is linked to northern European genes. 'I think I wah behint'door when luck was being handed out' as they say in Yorkshire
Hi tangocharlie, my mum had SLE and a first cousin has an autoimmune disease. A few months ago I had my DNA analysed and I am definitely a ‘ Viking’. Lady Luck not abiding here either. I’ve also tapered to 5mg three times now but can’t get below that dose so am happy to stay there. I’ve no real problems with pred and my mum took it for probably the last 10 years of her life. QOL is so important. Take care.
My mum had GCA also. We are from the North East. (Dark, though feel more Celt than Viking.)
Interesting ... It's a paradox that nearly all the PMR help groups and majority of hte charity's members are in the south, yet there must be loads of us in the north, the charity was originally founded by deermined people like jinasc in the north
PMRpro will say it's because [we] southerners whinge more about our illnesses, so maybe are more pro-active is seeking help.
I'm staying on the fence on that one, and dashed cold it is today - even for a Viking Goddess! Nuff said😔
That could well be the case, according to legend we northeners are a hardier breed LOL. But then we famously don't put up with nonsense either. I think this is worth a separate thread as the charity is attempting to look into this and redress the balance
Yes I know it is being looked into...
healthunlocked.com/pmrgcauk...
Not sure that I put up with nonsense either - at least according to some of my previous line-managers comments... or my family's.😏
😆😆😆
If only the country was run as well as this forum
Me neither my family and friends say they wish they c ould speak direct and firm as I do...I say to them, if someone can give it they have to take it!...It happened today, a national gas company (no names) has employed a dreadful pipe company to do the pipe work....they badly damaged our garden, and sewer, some were sacked, but still there is a job not done. They rang today......rambled on a load of rubbish for excuses, thought of tangocharlie....said No!....that's not correct, we want you here to show what you are saying is totally wro ng.....OH said I am wasting my time......I said, maybe, but I won't go down without a fight!
Our mother also had an immune illness sjogren
Thats interesting as I as well had genetic testing and have a huge Scandanadian link and only norther England and Scotland as the rest. I Have PMR and my Mum does too
I find this so interesting. What's the age difference between you? Has your mum still got it?
She didnt get it until 85 I was 50. She only got arms I have both hips/ thighs and arms/ shoulders. I was diagnosed first. I still have it she was clear in 18 months with 1 flare on very slowly decreasing steroids and has never had it since ( 2 years now)
I am the youngest daughter , i developed PMR at 50 I am now 67 . My elder sister was told she had PMR 2 yrs ago at 68 , but refused steroid treatment, as she has seen me go through years of steroid chaos. This delay in treatment cost her , as she went on to develop GCA My dear mum developed sjorgens at 65 then went on to lymphoma. She has now passed age 87 with cancer .
My mother’s cousin in Estonia has it too.
That is interesting.
At my appt with my rheumy last fall she mentioned my “success” getting below 7.5mg of pred which she considered a low dose. We also discussed the goal of getting to 5mg slowly, if possible. No rush. (I was at 6mg at that time)
In Nov when I saw my GP for follow up for the radial fracture of my elbow while on vacation, I mentioned that I felt good on 6mg, but that dropping to 5.5 was a challenge especially because (new) adrenal symptoms emerged. He asked why I just didn’t stay on 6mg then as it was a safe dose and my QOL was better? I explained I wanted to give my 14 week taper a chance (double the usual 7 week taper).
It was reassuring and validating to hear from both of them that I’ve made it officially to a “low dose”, and in doing so I feel less anxious overall. The down side is that it’s taken 5+ years, and the on-boarding of a steroid sparer, to get here (5.5).
Hoping you get in to see your sister’s rheumy sooner than later. Would you consider going back up to 5mg till then to get some much-needed relief? You already know they think 7mg and lower is a safe dose. Thanks for sharing and keep us updated.
"You already know they think 7mg and lower is a safe dose"
Unfortunately, many don't. And there is evidence that it is safer, not safe.
Understood.
It does seem that 5mg is more “acceptable” as I know a few folks that have stayed at that dose long-term under a rheumatologists care. Hoping to get there….eventually.
I do recognize the importance of trying to lower your pred dose, but also appreciate how frustrating it is to get “stuck” after multiple tapering attempts fail. Unfortunately I’ve read on here about plenty of doctors who put pressure on their patients to taper their doses quickly with the goal of getting off pred altogether, regardless of the patients QOL.
Thank goodness for some common sense. I've been on 7.5mg for 3 years now. I function well on this dose. When I try to taper I feel rubbish. My rheumatologist is sufficiently enlightened to keep me at this dose, or rather he doesn't question it, but what will happen when he retires is anyone's guess. My GP, who is an advocate for natural remedies, feels that I've been on prednisolone "a long time".
My GP said the same thing about being unconcerned if I continued at a dose of 7mg which is reassuring. Bless him for being up to speed on current thinking, I wish that was a more common tale on this forum.
I have been managing fine on 6mg but it’s good to know I have a little wriggle room if I need it.
Why wait til your appt? If your prescription allows and you have enough tablets go up! That way you'll know if you feel better or not and have more info for your appt.
I am so pleased to read this thread I have actually printed it off for my next GP annual review (hope that’s OK and I’m not breaching any rules).
I’ve had PMR for 8 years, the pred. works well for me but I was still on 8mg daily when I last spoke to the GP. I was so shocked when out of the blue she said”you’ve been on pred for a long time now I’d like you to come off it over the next 6 months”. 😳🙄
I was so floored by that I wasn’t my usual reticent self and said I’d been trying to reduce every 3 or 4 months but it just made me so uncomfortable, and QOL wins hands down etc. There was so much else I could have said on reflection but I think she could tell how shocked and distressed I was (this was a phone appointment of course) so said OK she’d give me another year’s worth of whatever I think I need(she’s been happy for me to self regulate up until now)
I am currently happy on 7/7.5 every other day and starting a VERY slow taper to 7mg daily. Here’s hoping I make it and it will keep her happy backed up by this really interesting thread illustrating that other medical professionals consider this a low dose and are happy for people to stay on that dose indefinitely.
I’ve been festering on that telephone appointment for weeks - thank you for giving me some backup!
She needs to learn that with PMR you need what you need for as long as you need - and there is one form of PMR that goes on and on and on ... Also, after 8 years, the adrenal function is going to be a factor - it takes a LONG time to return if it is going to at all and it is unlikely to happen in 6 months.
We encourage people to keep anything that is useful - stored as files or printed off in a way that suits them. The more GPs get to see of what goes on here the better - some need to learn the reality of living with PMR!
Adrenal worries was one of the things I would have mentioned if I hadn’t been so thrown by her out of the blue presumption that I hadn’t been trying to reduce (no one here wants to be on pred. after all) and that I’d be able to do it in 6 months without being crippled by pain and stiffness or adrenal insufficiency🤷♀️
They really oughtn't to assume so much! And think before ordering silly things.
I don't have PMR avadip12, I have another auto-immune condition. I'm on 5mg and my rheumy says that, while he would like me to try to reduce a little, he thinks I'll be taking Pred for life, and as long as I'm at 5mg or below he will be OK with it because side effects are minimal at that level. I hope that you find a dose that keeps you feeling well and that the rheumy is happy with.
That's interesting. I am currently "resting" at 5 mg. It's a nice round figure and I feel good. I look after my health and do exercise and feel fine. In the past I reduced to 3.5, ages ago now, and had a flare so went back up to 10 then down to 5. Every week, when I load up my pills box, I think, shall I taper this week? And then I always find a reason - it's too cold or I'm too busy - to not taper! Maybe in the summer . . . .
That’s an encouraging view, especially for those who cannot function or live a normal life without steroids. Let’s hope it’s real and not just an appeasing view. Logically it seems to make sense that the less steroids you take the less side effects or invisible damage you are causing. However, for those who have not reached the limit in their attempts to reduce steroid intake, there is plenty of literature that should encourage them to persevere in attempting to live with less steroids. Attached is just one example from the National Institute of Health Research. This is not just for PMR but for all inflammation based treatments…
evidence.nihr.ac.uk/alert/l...
An interesting viewpoint. I had a GP who was very generous with prednisolone and I was happy to follow him even though I was well read in the side effects. The first six years were fine , tapering then back to 30 mg twice because of a severe relapse. Now the side effects are worse than the PMR although I still think it’s active, Avascular necrosis, trouble controlling DM2, Hypertension, Rapid onset cataracts to name a view. Prednisolone was and is my lifesaver but I do think we should pay attention to the accumulative dose.
On a more positive note, I had my dreaded med review with the surgery pharmacist today and she was great.she knew lots about PMR and asked if my prescriptions were enough that I could plan my taper easily. She also organised a refill of Leflunomide that I was struggling with because the dr is on holiday! Common sense still exists!
FOLLOWING UP ON MY YO YO POST. Yes totally agree , one should never totally give up trying to reduce their dose. However when you get stuck for months on a lower dose and having a return of symptoms , there needs to be some discussion with your clinician as to whether you should continue to lower. My consultant says go back to the dose before, which is only 0.5 mg , but as I have waited 6-8 wks to settle on the lower dose , and it has been failing . Going back to .05 dose doesn’t treat the inflammation that has built back up. Then I don’t have a review for 6 mths , and my GP will not prescribe for increased steroid dose unless my blood shows inflammation ., which it never does . So really me and others are caught in this catch 22 situation. I have no idea how I am going to get round this. Think I need this discussion with my consultant to give me permission to go above .05 dose to get my QOL back on track .
I agree, it’s all so difficult. I realise how fortunate I am that my surgery allow me plenty of pred. Hopefully your consultant will be amenable to an increase and you start to feel better soon.
Here is a quote from my Rheumatologist's recent letter "...prednisolone to find the lowest dose that is effective for her GCA/PMR." She is happy for me to be on whatever that "lowest dose" is - currently 2.5 / 2mg, but before Christmas I had tapered to 1mg and it wasn't enough. A year ago, she kept me on 5mg for 5 months!
The inflammation is in your body, not your GP's nor your Rheumatologist's and it needs whatever dose of pred it needs. Is there a Rheumatology 'helpline' you can ring and speak to a Nurse, before your 6 month review? If not, contact their secretary.
Best wishes.
Thank you. TBH my hips were so painful 3 days ago I just couldn’t bend over without them going into spasms, also my shoulders were sore . So I have increased to 7 mgs . If this gives relief in 5 days I know it’s the PMR if not it’s what the consultant said , that it has morphed into ( fibromyalgia ) . But getting a prescription is going to be difficult . Yes contacting the secretary will have to be the answer , I hope . As last time when I contacted my GP , it was = 1 fill out an econsult 2 reply follows in a week 3 go for a blood test and I will write to your consultant . 4 reply came 3 wks later go up but 0.5 . Must be so many of us that get this problem that .
How interesting. 4 years in with PMR which was probably triggered by very major back surgery. My GP felt I had been on steroids too long with too many flares. I saw a rheumatologist in November 2023 and started 15mg MTX plus Folic Acid as a steroid sparer to help me reduce my flares and yo yo steroid doses. Well, having suffered from nausea until the end of December, along with tiredness, often feeling lightheaded and depressed, I have stopped taking MTX. I am on a steady7.5/7mg Prednisolone on a very slow taper so it is great to read this thread as it gives me the confidence to listen to my body. That awful nausea feeling has gone and I am feeling human again!!
I have GCA, PMR and MS. have been on prednisone since about March 2022 and have reduced to 5mg from the initial 60 mg with the addition of Actemra. As I am doing well on this dose my rheumatologist says she recommends staying on 5 mg and not reducing further, which I am very happy about. I do have osteoporosis but am having Prolia injections for that. I am 80 years old so, at this point, am happy to do whatever is necessary to have as good a quality of life as possible. Your sisters rheumatologist sounds like the one to see. Good luck!
Last summer, because I had been yo-yoing my GP wanted me to see a Rheumy to see whether Methotrexate was required. I opted to see one privately as I thought it would be a long wait to see one on the NHS and, perhaps more importantly, having been a member of this forum for almost 3 years I wanted to avoid seeing one who was ignorant or inflexible regarding PMR treatment. The rheumy I saw, in Oxford, Dr Joel David, took one look of my graph of daily Pred dose and said I had been trying to taper much too quickly. This is the tapering regime he advised me to use:
O = old daily dose, N = new daily dose
Month 1: O, O, O etc every day
Month 2: O, O, N, O, O, N, O, O, N etc
Month 3: O, N, O, N, O, N, O, N, O, N,
Month 4: O, N, N, O, N, N, O, N, N,
Month 5: N. N, N, etc every day
The difference between O and N is 1mg and in my case, in August 2023, O was 8mg and N was 7mg
Using this method I have had no trouble getting from 8 to 7. This month (January) I am at the 7, 7, 6 stage. I did experience some increased pain around Christmas but I had a chest infection in December and I didn't follow sick day rules and add 5mg.
I am due see Dr David again next month and will be asking him whether the difference between O and N should be 0.5mg once I get to O=5mg.
This is a very slow taper resumting in just 3mg per year. I was diagnosd in March 2021 and started on 15mg.
Hallelujah!!!! That is even slower than our usual though we do suggest lengthening the time for a mg to 3 months when someone is really struggling.
And then there are doctors who want patients to do more than 1mg per month.
Can you get him to publish something about slow tapering? And I do hope he doesn't want to retire yet - because he must be in that sort of age range.
Yes I suspect he is in "that sort of age range". I learned of him in June 21 via a post on a PMR Facebook group by one of his patients in Oxfordshire who saw him on the NHS. (I left that group pretty quickly as it had some very cranky people in it). Below is what she posted. A taper even slower than the one he gave me. I like the comment "it doesn't matter that it will take ages". In hindsight, I should have contacted him back then!
Here is the extremely slow taper which my consultant rheumatologist has put me on. He says that I shouldn't feel it, and that it doesn't matter that it will take ages - it's more important not to need to increase the dose.
Month One: 10, 10, 10, 9, 10, 10, 10, 9.....
Month Two : 10, 10, 9, 10, 10, 9......
Month Three : 10, 9, 10, 9.....
Month Four: 10, 9, 9, 10, 9, 9, 10......
Month Five : 10, 9, 9, 9, 10, 9, 9, 9.......
Month Six: 9mgs
Month Seven : 9, 9, 9, 8, 9, 9, 9, 8......
And so on!
He could be an honorary member here!!! I am convinced the worst thing any doctor can let a patient do is flare and yoyo the dose. At any level.
Dasgupta did a 3 day taper similar to that but it was much faster, And that is the approach Ragnar used many years ago and which led to the DSNS taper.
That’s great news . I managed this stage very well , that was 7 yrs ago approx . My problems have mostly been going from 7 mgs down to 4 . That’s when the yo yo stated , the last few yrs it’s been 6 down to 4 and back up . Just can’t get past it , and been spending too much time trying to settle into the lower dose which I wait for 8 wks before the next reduction, but as I am often not feeling any better I end up going up again . I do hope your reduction continues to go smoothly, it does for many
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