Having been finally very relieved to at least have a diagnosis for my symptoms I was started on 15mg Prednisolone just one week ago with a follow up call from the prescribing GP in another 3 weeks (so after 3 weeks on Pred). Yesterday out of the blue another GP in the same practice phoned up to ask how it was going, I said that I had noticed a significant improvement although I still had some level of residual discomfort and pain. He then said “oh well that confirms the diagnosis of PMR so I think we should look at reducing your dosage asap, probably in a couple of weeks”. I’m now worried that he considers “I’m cured” after such a short time and that my symptoms will recur immediately. I understand that at some point tapering of the dosage is the way to go but this soon?? Anyone shed any light on this, anyone else had this experience?
Too Soon??: Having been finally very relieved to at... - PMRGCAuk
Too Soon??
Oh dear, you are absolutely right and if this GP thinks that’s you done and you now come off Pred he is absolutely wrong. This disease lasts over 5 years on average. The point of tapering is to reach the lowest possible dose that still controls your symptoms. This has to be done gradually and carefully, never more than 10% of your dose. Have a look at FAQs for more detail on how to manage your condition. I think maybe this GP should read up about this autoimmune disease, unless you have misunderstood each other.
Thank you so much for response and confirming I’m not going mad. He said “let’s reduce from 15mg to 10mg to start off with”. Hopefully when the prescribing GP rings me back I’ll have a better conversation about this. If not I do have private cover up my sleeve so may have to go down that route.
The relief that I’m feeling due to reduction in symptoms is not inky physical but my mental outlook has much improved and I’m actually getting back to doing some of the simple things (walking/gardening) more like my old self. To go backwards now is quite frightening.
Again, many many thanks.
My mood improved immediately too. The sheer relief of having a diagnosis really helped, then a drug that actually worked, it felt miraculous. I am well aware of the dangers of steroids but that memory remains.
I was started on 15mg for six weeks, then 12.5mg for six. The drop to 12.5 was too much and I went to 11, before dropping to 10. Luckily, for good or ill, I’ve more or less managed my own reduction and am finally at 3.5mg, which is where I’m staying, for now. I’ve crept down to 2.5 a couple of times, but it’s obviously too low, at present.
I was told to do this.
15mg for 3 weeks
12.5mg for 3 weeks
10mg for a month
Reduce by 1 mg per month after that.
I think that is the standard NHS instruction. I didn't find it easy.
It may be standard but it's not tailored for the individual and that's where patients (and doctors) fall down. Notice should be taken of symptoms and Pred dose should be adjusted accordingly. I gather you found this out the hard way. Are you ok now?
I had to go back up from 8mg to 10mg about a year ago but now reduce by 0.5mg at a time. It isn't easy and I may be about to get stuck again.
I hope not! Maybe stay at the dose where you were last most comfortable for a bit longer if what you fear happens??
Yes. Trying to work out what is PMR and what is the injuries that I gained due to PMR at the moment.
Did you follow that and where are you now?? I was told to do thi as well. Do you have side effects each time you taper?? Thanks!
I followed it until 8mg even though I felt a bit worse each time, particularly below 10mg.
At 8mg I really began to have some of my stranger prediagnosis symptoms including not being able to bear straps and labels touching my back. I tried going back to 9mg. Not much better. Went back up to 10mg for 2 months after talking to GP.
Began to go down by 0.5mg every 3 weeks in 2022. Had MRI indicating that some of my pain is due to injuries. Done physio with mixed results. Perhaps due to taking prednisolone?
Now dropping 0.5mg per month. Currently at 3.5mg and much better than this time last year but think that I might stop here or maybe at 3mg for a while?
My pred side effects seem to be reducing. Face not plump. Eye bags somewhat better. Sleeping better. Not sure about hair. Never fell out in masses but might be thinner.
What do you mean by side effects? Do you mean steroid withdrawal? That can be a return of symptoms like pre diagnosis or a feeling of just being off colour -but should only last a few days.
If it lasts longer, the reduced dose is probably too low ..ideally you shouldn’t feel worse after a taper than you did before. Ideally 😊
That is the hope but it is so hard to tell. I am doing yoga as my muscle atrophy is something I cannot live with. So muscle soreness or PMR?? I have dosed down to 13 mg from 15 and have minor soreness but nothing like the pain of PMR! Was on 20 mg for 8 weeks when first diagnosed in June! Hoping to be able to continue dosing 1 mg every 3 weeks! Thanks for your ongoing support it is always nice to have someone to talk to about these things!😉
The side effects are waking at 2:30 am and not being able to go back to sleep. Horrible cuts and bruising, a tiny bit of blurry vision, tested twice not GCA. And moodiness that is out of control. Also horrible heartburn. It’s all so awful. I meditate do yoga read and breath. So I’m doing everything I can.
Unfortunately all side effects of Pred - for most people sleep, blurry eyes and mood swings should improve as you reduce dose.
healthunlocked.com/pmrgcauk...
For arms -use basic moisturiser or emollient for dry/sensitive skin, arnica on bruises and try and keep covered with lightweight long sleeved tops.
healthline.com/health/emoll...
Have you been prescribed anything for heartburn?
Since the very beginning I have suffered the same side effects as you apart from heart burn, which I am now getting almost two years later. I refused Omeprazole as a precaution but am now taking it for four weeks (and then will taper off and see), together with lots of natural remedies, ginger tea, aloe vera, yoghurt, kefir etc. I have had real problems getting under 3mg, but am trying again. I have problems knowing what is a return to symptoms, what is Pred side effects and what is Pred with drawl , but doing my best and finding the fatigue and the emotional ups and downs the most difficult.
Thank you it is nice to have people who understand the changes we are experiencing. It is so unfortunate to have so many side effects from one drug! I’m sorry you are now experiencing heartburn. I take Zanax 2 x a day. But I like you eat yogurt and drink a probiotic daily. I bambtrying everything in the wheelhouse trying to stay as healthy as possible during this time! Hang in there and fingers crossed you will be off soon, you are so close!
Difficult to say from such a brief description - but I;d wonder how much is due to poor adrenal function lagging behind the reduction in dose.
SheffieldJane is spot on.
Good that you are feeling better on 15mg but more time is needed before you reduce to make sure that the Pred has got a good handle on the inflammation in your body. A word of warning: go easy on resuming your former activities. Walking at this stage is fine as long as you don't overdo it so listen carefully to your body. Gardening can be hard on your already overstressed muscles. Bending, stretching, even sweeping up leaves, etc can stress those muscles further than you may think so if you can get someone else to do essential jobs for the time being that would be the way to go.
Best of luck for a smooth journey going forward.
Yes, very wise advice. It’s just a relief to not look at my garden and not even want to go out there. A little at a time.
Thank you
I wrecked myself pruning in the Spring. I had to do it then because a neighbour needed it done. I find bending forward at an angle from the hip particularly dangerous.
Oh no! The roses will have to stay unpruned for now then.
Cleaning the toilet is another dodgy move so get somebody else to do that. 😉
I live alone so will surprise my son with that job next time he visits then 🤣🤣
Yes, I agree; not overdoing it the moment you feel so much better. I was first diagnosed in November 2019, and it’s been a real struggle with conflicting advice from GPS, so eventually, I went on my own with Dead slow and stop tapering. Unfortunately, it flared up again recently,and this time, I was put on 20 mags for 4 weeks which made me feel like Superwoman! At present, I am on 15 mgs and still feeling good, but started walking more,and now have “Plantar Fasciitis “ which has put paid to that!
So my point is, after the preamble, is; don’t overdue even the little things to begin with, otherwise, in my experience anyways, PMR will come back and bite you!
Good luck, and , if you listen to all the people on this forum, you’ll get far more help and support than most of the GPS out there, especially where PMR is concerned!👍
At what dose did you flare? There is usually little point in going back to the original starting dose unless it is a true relapse of the disease process but many doctors don;t understand how PMR management works think it makes a difference - it doesn't and so the patient is given far more pred than really required.
Hi, there! I had come right off the Pred some months ago,and then, wham! Couldn’t physically get myself out of bed one morning,and after blood tests, my CRP marker was over 200!
Very typical - the disease is actually not gone but at a very low level - even 1mg/day can be plenty to keep the inflammation under wraps but at zero the inflammation just builds up, like a dripping tap will eventually fill a bucket and it overflows. Up to 6 or 7 months is quite common. And even in that situation you often don't need to go back to the high doses - or not for long and you can often reduce rapidly to well under 10mg as soon as the stored inflammation that stopped you in your tracks and sent the CRP into space has been cleaned out!
hi and welcome,
Maybe have a look at this intro post -
healthunlocked.com/pmrgcauk...
…and no, you are not cured, and you do need to reduce, but slowly and only after your initial dose has got all built up inflammation under control - in my mind 4-6 week is ideal, but many tapers do say after 3 weeks.
%%$ - and NO, NO, NO!!!! You will be back to the start with a 33% reduction - no step down should be more than 10% of the current dose.
rcpe.ac.uk/journal/issue/jo...
Give them a present of this to read - 10 years old maybe but still in use by the author, Prof Vanessa Quick at Luton hospital where she is a consultant, specialist in GCA and PMR and doing research. I'm less enthusiastic about the year at 10mg - I think it is fine to continue reducing if you can but in 1/2mg steps at most.
There is a return of this fad to start low and reduce fast - and it rarely works. The sooner the GP training initiative gets going the better.
My rheumatologist wanted me to reduce 5mg within three weeks which I did. Total disaster in my case, but a male friend managed it from 15mg to 10mg in two weeks which he decided to do himself, he had no problem.
Well done him. Part of my concern is that none of the GP’s who I’ve spoken to about this whole issue seem genuinely interested or knowledgeable. I hate to criticise these qualified people but one was desperate for me to have arthritis and one said ‘it’s probably just your age (66).
I have yet to actually see any of them face to face, they still don’t consider it necessary (complaint into the practice manager) and being referred to a consultant/rheumatologist doesn’t seem on their radar.
Part of diagnosing PMR as opposed to some other things requires physical examination.
To be fair, when I was first offered pred it wasn't because the rheumy thought it was PMR = but as a temporary aid to getting through a working trip to the USA. I got a 6 weeks taper, 2 weeks each of 15/10/5 and stop. Within 6 hours of the first dose I could move normally, no more crawling up the stairs on hands and knees. Each step down worked with no recurrence of symptoms or other difficulty. Within 6 hours of missing that 5mg dose I was in bed in tears of pain. After that massive flare of symptoms I struggled to get things under control and only reached 5mg in comfort once, about 6 years later when it lasted about 2 years! Each time I have had a flare up of the symptoms it has been harder to reduce again although enough pred leaves me able to function and relatively pain-free.
That sounds like a popular diagnosis “it is probably your age”! Around 75% of patients never see a rheumatologist for PMR, it is managed perfectly satisfactorily by primary care at GP level.
like you, I was started on 15 with instructions to reduce to 12.5 after three weeks. I tried but the pain came back in a day or so. My nice gp was happy for me to stay on 15 & try again after a month which was ok. Then I found this forum & learned to self manage. Hopefully your prescribing gp is a bit more sensible than the other chap - avoid him!
Please sit and read through the posts on tapering. Do not listen to that GP please. You will have to advocate for yourself...I am going to have to the same at my next rheumy appt. I was diagnosed in May. Started on 20 mg. Went back for check in and things were better (On the 3rd day I realized all pain from all my ailments were gone and I felt great...less fatique). But it doesn't last in that exact way. It kind levels a bit. When I went back to the rheumy my inflammation labs were better so I was told to go down to 15, then in 2 weeks go down to 10. I did that....BIG MISTAKE. So since that time I have been all over the place dosage wise...starting over twice...learning what it feels like to really improve enough to reduce. All of the info here has help me understand what the treatment should...using pred according to symptoms. I am trying to find the right dose to work down from...had a good few days but tonight my main PMR symptoms were back and I didn't push myself today so we will see what.tomorrow brings. But I hope you will learn from my mistake and all the info frIm these folks...which it sounds like you have...learning the reality of this disease and how to manage it. These docs don't get it. I am mad actually to be where I am...but at least now I know. Thank God for the PMR Tribe!!!! Good luck...heal fast ....take care.
Yes, the same happened to me. After 3 weeks at 15mg the doctor said i should taper to 12.5. This I did, but then put myself up to 13.5 as the drop for me was either too much or too soon. The doctor at the time wasnt impressed and gave me a list of all the potential side effects of taking pred and why i should be tapering down not up! This left me in tears. It was like being told off like a naughty schoolgirl! Im afraid it would seem so many are going by the textbook rather than the patients symptoms.
It’s not my usual practice to challenge those who are more qualified than me but in this case I’m not convinced they do know better. I only have 5mg tablets so could probably only reduce 2.5mg at a time on a practical basis by cutting in half. I’m hoping the prescribing GP will see sense. Certainly the initial relief from pain and fatigue is waning slightly and I have some symptoms back at a low-ish level so to think about tapering now is worrying me.
Fingers crossed I get some support and understanding.
As others have advised, I'd hold off the tapering for now. And also, ask for some 1mg and 2.5mg pred to aid your tapers. Its easier than trying to cut the 5mg. I assume you're on plain uncoated pred as opposed to enteric coated? I, at my request, was on the coated ones so needed the smaller doses as these can't be cut.
yes plain uncoated. I’ll definitely be asking for the lower dose units IF tapering is suggested. Thank you!!
You have to do you bit though - you are still ill, you still have a serious systemic autoimmune disorder that isn't affected by the pred, it just manages the inflammation which causes the symptoms. The autoimmune part is still attacking your body tissues. You must learn your limits - do more than that and you are likely to develop DOMS, delayed onset muscle soreness, the same sort of soreness you get from overdoing exercise. Pacing and resting are integral parts of managing PMR - too much of any repetitive action will result in sore muscles.
healthunlocked.com/pmrgcauk......
talks about all aspects of managing fatigue and returning symptoms on the same dose.
please explain DOMS. I think that I have it and what I can do to relieve it? Thanks in advance.
delayed onset muscle soreness - the soreness most people get after a lot of exercise, especially if they haven't been training beforehand.
Don't exceed your limits in the first place. And once it has happened, patience
veloforte.com/blogs/fuel-be...
explains it quite well - except the normal recovery of a couple of days may not apply to us since our muscles are compromised and won't heal as well - hence the advice to avoid it in the first place. We should also NOT continue to exercise with it or the microtears that cause the pain won't heal and the pain may last weeks or even months if you keep exercising.
They also give tips for relieving it - but even for healthy people it require time and patience.
Wow. I thought it was just lactic acid in my muscles, but was like permanent. Thanks for the clear explanation.
Now shown to NOT be lactic acid!
"our muscles are compromised and won't heal as well"....well said PMRpro. I had an awful calf cramp during the night a couple of weeks ago, after a good walk, probably the longest I've managed in a good while. Well, my calf muscle was sore and felt tight for a few days afterwards. 😩 I knew my muscles were weaker but boy did it hurt!!!
Hopefully, he may not do anything drastic. This is what happened to me. Once it was determined that predisolone worked for me and I did have PMR I was put on 15mg for 3 weeks, then had a blood test. My inflammation markers were reduced considerably. I was then reduced to 10mg for another 4 weeks, had another blood test and, again, inflammation markers were down. So I was put onto 7.5mg in October 2020 and have remained on this dose. I had no pain whatsoever through this early taper and had my life back. I have recently tried to reduce from 7.5mg to 6.25mg but my body is telling me it's not the time. PMR has to run it's course and not everyone responds to the same treatment which a lot of rheumatologist fail to understand. I wish you all the best......
My experience was starting on 25mg and weekly face to face GP reviews to check how I was doing. I started noticing relief from symptoms within about 48 hours and virtually all gone in about a week. Tapering of 2.5mg fortnightly started about 6 weeks later and my care thereafter was picked up by a rheumatologist. Tapering moved to three weekly and 1mg at 10mg, and then four weekly and 0.5mg after a flare, currently 0.5mg reduction every four weeks. Now on 1mg but taking methotrexate alongside, all going to plan I should be off pred in just under two years.
That sounds a very comprehensive care package and you seem well supported, I envy you. I’d love to see my GP face to face, so many things they should pick up just by looking at you, not just the affected body areas but your eyes etc. Currently my GP surgery is not offering face to face unless in exceptional circumstances, obviously this whole scenario in general is another widespread issue affecting the public in general. However if you have a GP (one of 3 in my practice) who seems difficult to talk to-long silences-mumbling-then it makes everything more difficult.
what are they afraid of f2f talkin g to the peeps they are supposed to be caring for
Doesn't always work like that though - even with methotrexate. PMR lasts as long as it wants - and even 1mg can be plenty to keep the inflammation in check; about a third get off pred in 2 years. But all the best having got this far. That is a fairly sensible approach - shame UK doctors aren't the same!
When did you start methotrexate? Are all patients referred to a rheumy? Where are you?.
I’m in Gold Coast, partner is working here. GP did rheumatology referral as soon as I improved with pred - confirmation to him that it was PMR. I’d to wait about 6-7 weeks for appointment as she is popular / busy (private). I’d been tapering successfully but had a flare (no symptoms, blood markers) around 5mg. Went back up to 6 and slowed the taper, flared again around 5, she wasn’t happy with more than two attempts so recommended trying MTX. I must be one of the lucky ones as I’ve had no side effects at all and have got down to 1mg so far. Of course, that may have happened without MTX, I’ll never know.
It does work for a small cohort of patients - and when it works it works well. I tried it - couldn't function for the fatigue and it caused so-called pred effects I'd never had on pred alone! I wondered if you were under any of the Aus rheumies I meet in research group zoom meeting. But she sounds worth hanging on to! And certainly preferable to the UK at present!
oh dear another GP fool . I hope he has a think about that. My Rheumatologist originally told me 6 months. 4.5 years on and I down to 2.5/2 Pred.
I was dropped from 15mg to 10 mg by my rheumatologist after 3 weeks and ended back at square one. Looking back I had only about 70% relief at 15mg so it was crazy to drop so much at that time. Thankfully at that time I found this forum and got the education my rheumatologist seemed to lack🙄. Perhaps if I had 100% relief from 15mg that kind of drop may have been possible but definitely not in my case. Mentally at the time I found the set back very tough as I had been 2 years suffering and in my ignorance thought the set back was because the treatment didn’t work. Prior to this I would have avoided chat groups and forums like the plague but the knowledge and support of this group is amazing.
I can only tell you of my experience with prednisolone but I agree with previous correspondents- it's just not possible to come off it that quickly.
I was diagnosed 3 years ago and started on 15 mg and it seemed like a miracle, I was so improved! I reduced to 10 after some months, very keen to do so because the side effects of weight gain, diarrhoea and hair loss were depressing me, but anything below 5 brings everything back and a recent consultation says I should stay on 3 'for the time being'. Even so, although side effects are not so bad, I am still in the grip of PMR which keeps flaring up when I take things into my own hands and reduce to 1 or 2.
Your doctor should read up about it more I think!
Jean
I started at 20mg, lowered to 15mg after 4 weeks, then drop down to 10mg at advisement of terrible rheumy. Flared and back to 15mg for 6 weeks. Then started my own taper .5 mg every 4-6 weeks….no problem till I got to 9mg. I really didn’t taper if I had aches and pains, although there were some steroid withdrawal symptoms that occurred at the beginning of some of my tapers that lasted a short time.
Of note I had been experiencing worsening PMR symptoms for over 5 months prior to diagnosis so there was significant build up of inflammation by the time I started pred.
Glad you had a positive outcome after taking your initial pred dose, a sign that indeed you have PMR, but I would be hesitant to taper down lower if you are still having pain/stiffness. All the best on your first drop in dose, whenever that may be.
you we’re lucky seeing a doctor during covid at our doctors you have to go on your knees to have a face to face appointment, that’s if you can get passed the receptionist!!!!!
My rheumy has told me to reduce by 1mg every 6 weeks, I'm now on 7mg. He says i am likely to get a return of my 'normal' aches and pains and to take paracetamol. But how do I know what are my normal aches and pains? Apart from wear and tear in my lower back, all investigation prior to diagnosis - ultra sounds, Xrays and MRIs showed no arthritis but inflammation- knees, hips, ankles, elbows. Do these count as 'normal aches and pains' or were they a prelude to PMR? Is it stiffness I'm looking for? But then I used to get stiff ankles ...
Wow! He really did think Pred is a miracle cure. You’ll be walking on water next! Bonkers. You’ll have to guide your GPS along the proper path. Others here will tell you what to do - don’t panic, you are very definitely not on your own x
Thank you. I was somewhat taken aback having read this forum!!!
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