Iam so confused about Polymyalga, when i was told i had it 18months ago, started on 25mg pred, my doctor said after a couple of months, start to rejuice by 1mg a month, brill . so here is me thinking that was it, all gone just need to get off the drugs, then its over,, how wrong am i, seems like this goes on and on, drugs up and down, no one told me, about any off it,with out this site i would be thinking it was just me, doctors should explain much more about this illness, so thank you all for your help, and ps will it ever totally go, xxx
Polymyaga will it ever go : Iam so confused about... - PMRGCAuk
Polymyaga will it ever go
Written by
Harrigan
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41 Replies
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DorsetLadyPMRGCAuk volunteer
Will it ever go? For the vast majority -yes!Unfortunately can’t tell you when, neither can doctor-which is maybe they don’t try. Plus many really don’t understand it - maybe reading this forum should be compulsory for those….
I think you are correct DorsetLady, that many doctors & rheumatologists while knowing PMR & recommended treatment methodology, not only do not understand the pain itself, and are sometimes uninterested in a patient’s experience & suggestions of what works best individually, and give promises or forecasts that are mere platitudes .. all that to say this forum of sufferers is invaluable for commiserating and offering encouraging suggestions.
PMRproAmbassador
The vast majority of people DO find that they are able to reduce the dose of pred to a very low level and then eventually off altogether - but very rarely in a period of under 12-18 months. About a third in total are off pred by 2 years. There seem to be a lot who take 4 or 5 years to get off pred - bearing in mind return of adrenal function is crucial there. A very small number have a very protracted journey, a lot still need pred at 10 years but mostly at a very low dose. A very few of us seem to have PMR for life - but not many. Even after you get off pred, you are not "cured" - the propensity to develop PMR remains, it can always relapse but in fact that isn't very common.
They don't explain more because they don't know more - they don't join up the dots very well. The information in most of the medical literature is nothing like the reality of living with PMR but the doctors tend to think patients exaggerate (if only), Because a lot of patients are elderly, often well over 75 by the time they have had PMR for a few years, doctors assume the 2 year figure is correct and tell patients that the PMR is gone and their pain must be osteoarthritis or just "old age" as if it is fine to put pain down to age. And patients are regarded as uninformed - didn't go to medical school so can't possibly know anything about their own bodies.
That is changing - more of us have good educations, lots more have done medical science and can argue their case and do their own research, able to identify reliable sources. And some rheumies and GPs DO understand this isn't a simple disorder that disappears with a few pills. But there is a long way to go.
Thank you so much, was beginging to think it was me, not getting to grips with pred, xx
Have you relapsed a few times at a similar dose? If so, that is your body telling you you have arrived at your destination for now - the lowest effective dose. You aren't heading relentlessly for zero but the lowest dose that works as well as the starting dose did. Not the same thing at all. And once you start yo-yoing it gets harder.
Very interesting/informative answer as always! I generally feel all at sea with this, just keeping my head above water, (thanks to this forum), mainly because I don’t feel the condition is really understood or recognised by my surgery.
didn't go to medical school so can't possibly know anything about their own bodies. - and did you know that the second you decide not to do a medical degree, you suddenly and miraculously lose all the education you ever had?
Well of course ... I did go to medical school - but decided not to continue with medicine. Not entirely sorry looking at my friends who did medicine all the way through.
Probably a wise choice. My son did a medical degree and fell apart at the last hurdle. So ended up with just a pass degree and a £40k debt. When he did the interviews, the stress was all on achievements in the arts, so they wouldn't just get doctors who were non-communicative scientists. He was given a place at 4 med schools. At the Cardiff interview, he was asked ONLY about his trombone diploma! Medicine wasn't anything like what he was expecting
Looking at your earlier posts it's apparent that your doctor isn't treating you as an individual. There is no 'one size fits all' with the tapering process and he should be guided by symptoms. To send you away with instructions for weeks in advance was a huge mistake. ☹️
We must be in sync. Just this morning I got up and thought, will this darn disease EVER go away. I am at 4.5 years. and 2.5 mg. I have had 2 flares and have gone back up to 10 and 7. Now I am just sitting at 2.5. and staying here for at least 2 full months before starting the DSNS method of lowering to 2 then will stay for 2 months and do it again. Or stay longer. If the disease isn't gone it doesnt matter HOW slow you go..it will rear its head once again! All that being said, things could be so much worse. So I am filled with Gratitude for my relatively easy life. I am 75 and alive! And I have this site to soothe me!
Same.
I took the last year to go from 1mg to zero very slowly. Still on MTX but have reduced that t0 10mg weekly. Bit stiff today so I hope it isn't creeping back after two months.
It seems a large number of GPs do not have a lot of knowledge about PMR, that also seems true of rheumatologists. A lot seem to think you prescribe steroids and possibly vitamin D with calcium, get the patient to reduce as quickly as possible, take a blood test every so often and that is it. Some may organise a Dexascan if they have time.
That’s been exactly my experience but I’m at a loss as to understand what else you could realistically expect from them, surely there’s not much else to do other than keep taking the prednisone, or is there another way I’m not aware of?
If only I knew!! I have just given up and stagger on with this board!!
At present no - however, good use of pred helps - but they are so terrified of using it at all they want to get patients of too fast ...
Like GCA went, so did PMR. But I won't hold my breath. These are in remission and could strike again. In the meantime, blessed with Sjogren's Syndrome. Immune system determined to keep it in the family. Could be worse.
Hi, my story is the same as yours ! When my Rhumy said it’s an average of 18 months I thought no way, I’ll be off these steroid asap. I didn’t know it was a yo-yo scenario and you really have no control ! I’m exactly 2 year on my journey and am yo-yoing with 4mil reduction. Good luck to you x
It doesn’t have to be a yo-yo scenario nor out of control -
but you do need a sensible doctor, an even more sensible tapering regime, and a greater awareness of your body/illness and what you can and can’t do.
Not much to ask! 😂🤣
And if you are yo-yoing at 4mg perhaps you have gone below the dose you really require.
Totally sympathise with you, I was told it would last 'about a year' nearly three years ago, still taking pred been down to two and a half, flare, back to five now.Truth is nobody seems to know anything, when I mentioned it at hospitals where I went fir routine checks without fail they all said 'what's that?
No - it's not you. Just a misinformed GP. You might not get off the prednisolone any time soon but it's not a race and you will be able to reduce the amount of preds you take . Stick with this forum - there are some brilliant and very knowledgeable people on this site. And the rest of us are with you ............... Take care.
Hello Harrigan,I know exactly how you feel as I was diagnosed by with PMR nearly 2 years ago after being admitted as an emergency. I had all sorts of tests, and at the end of the second test a rheumatologist was called to the ward. He was a registrar and after speaking to me for 5 minutes he said I have Classic PMR.
I have never been seen by a consultant despite many requests, the answer is always your GP will monitor you. I have had flares and consequently my steroids have been increased u and down.
On a number of occasions my GP has advised me that some of my aches and pains are not related to PMR. I have been prescribed antibiotics and told to take painkillers as well as my steroids.
At this time I am off for another blood test to see what is happening. I have also been told to reduce the steroids by 1mg every couple of days. I am now on 4mgs and tomorrow will go to 3 and hopefully be off steroids in a couple of weeks.
Consequently, I am feeling quite apprehensive, and I will wait for results of the blood tests, but I am then going to say to my GP that I will pay to see a consultant rheumatologist to clarify just what is wrong with me.
Sorry about the rant, but like you I am fed up of it all.
All my appointments with my GP have been on the phone, No chance of a face to face appointment.
1mg every couple of days is so fast!....your GP should know this....so you don't have to spend to be told that!...Have you tried lowering with the advice on F&Q.?....look on there for lots of advice.....and take control yourself of lowering.
Good luck....
Whether there is any hope for a cure in the future is not known but there are Public Policies issued that give a clue to what is being looked at.
publicpolicyprojects.com/po...
There is to be a paper issued soon on Advanced Treatments - Gene and Cell Therapy whether there will be anything on autoimmune issues is yet to be seen.
I am coming up to 79, have been on 7.5mg of prednisolone since August 2020 and feel well apart from the odd ache and pain which is probably due to old age anyway. 3 weeks ago I decided to start tapering. In Cyprus only 5mg tablets are available so I've decided to do a very slow taper by cutting the half tablet (2.5mg) in half again. One day a week I'll reduce to 6.25mg. I'll do this for a month, then have two days at 6.25 for another month. It will take 7 months to get to 6.25 (if my sums are correct), but it's no race. Then I will try to get to 5mg on another slow taper for 7 months. My mother had PMR and was never able to come off steroids so I hope I'm successful......
It took me 4.5 years.
Hi Harrigan, Yes, don't lose heart! Everyone has their own journey re PMR, but on my 3rd tapering attempt, its worked! My last Pred was 10/8/21 and I feel really well. But, I completely understand that PMR can bite back so I'm always aware of this. There's Lots of Brilliant advice on this site and I feel very lucky my Dr. told me to check it out as it's helped me enormously, but I listened to my body at the 'end' of each tapering event, and I just knew on the last attempt (finger crossed!) I was going to be OK. So, sending you lots of hope going forward!
3 cheers for your GP!..
I’m going on 5 years and now down to 2mg again. Maybe this time. I was down to zero for a few months once before!
I am 70 (b. 1951) I was diagnosed and went on 40MG the summer of 2020. I’m off Pred as of January 2022. I started MTX summer of 2021. The MTX was for my hands, now I’ve just started Hydroxchloroquine, also for my hands. I avoid sugar like the plague and am on a very spartan diet. My goal was not to get off Pred, only to stop the incessant pain. I track everything I consume with an app called LOSE IT. Trying to keep a balance of 40% fat, 40% protein, 20% carbs. I too wonder if there will come a time when I no longer fight pain, weakness, & fatigue. Monitoring everything I consume definitely helps. When I have a flare I always look to see what I ate the day before and what were my activities.
I have been on steroids for 2 years now, but everytime I have reduced to near zero my PMR has resurfaced. I am also concerned with the tiredness and lethargic feelings I get as I start to reduce down to 4mg/2.5mg. I never feel really well anymore. Anyone else experience this.
Are you reducing from 4mg to 2.5mg - if so, can I ask why?
Much too big a difference -preferable would be 4-3.5mg-3mg-2.5mg -or is that not possible because of tablets size availability.
Usual recommendation is not to reduce more than 10% of your current dose.
Maybe also consider a slower tapering option - see here -
healthunlocked.com/pmrgcauk...
I cut my pills in half,
That is still a VERY big drop at this level. The change in dose shouldn't be more than 10% of the current dose for safety - otherwise you have a relatively big dose change for the body to get used to and are also very likely to miss the dose you are looking for, If you overshoot - the symptoms will return. At this stage, 1/2mg at a time is more than enough - and much more likely to work.
well in that case reduce much more slowly...
I say it several times a week I think: you are never reducing relentlessly to zero - you are titrating your dose to find the lowest effective dose. Whatever your doctors may have suggested that PMR is gone in 2 years, they are wrong. One study found that the median duration of management with pred is something under 6 years - half of us are likely to need pred for longer. Pred cures nothing, it is a management strategy to combat the daily dose of inflammation created by the ongoing underlying autoimmune disorder that causes the symptoms.
By reducing in small steps you give your body the best chance to accept the change in dose without complaining too muchand also allows you to identify that dose as exactly as possible. Even 1/2mg too low and there will be left-over inflammation and it builds up, like a dripping tap will eventually fill a bucket and overflow. You need enough pred but as little as possible.
Agree this group has helped me understand more doctors really don’t seem to explain anything .i Cant See it ever leaving me down to 1 mg but still suffering pain in shoulders tops of arms, and hips.Sent for physio last week
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