New to PMR

[Buderim]

I was diagnosed with Polymyalgia Rheumatica last week. I felt the initial release from pain was miraculous after the first dose of steroids. I am now finding that I am not actually pain free but nothing like the agony I was in before. I would be interested to know if it takes some time to get rid of all the pain and also how others have felt at the start of this journey.

[piglette]

Sadly a lot of us are never actually 100% pain free, however if pred helps by at least 70% that is felt to be OK. Look after yourself as you do have an illness and just because a lot of the pain has gone does not mean you can carry on as you did before.

Your doctor should give you vit D and calcium to counteract and side effects of pred and you should also have a Dexascan arranged to check your bone density. You may have a good doctor who has already organised this.

[Buderim in reply to piglette]

Thank you. I am now realising that it is an illness and that care must be taken

[Rose54]

Hi

We are all different and it depends also on what you are trying to do in the day .Are you resting and letting Preds do thier job or are you trying to carry on as normal .

I had time off work when undiagnosed unable to self care and thought I was going to be like that for rest of my life .

First dose of steroids I was pain free and manged to return to work full time after 2 months of really taking it easy and looking after myself .

Not everyone is so lucky but others will be along with thier stories

Just love yourself a lot

[Buderim in reply to Rose54]

Thank you for this. Will try to love myself and be sensible.

[PMRpro Ambassador]

In the euphoria of less pain have you tried to go back to your normal routine? The pred is only managing the inflammation and in doing that relieves the symptoms. The actual underlying cause of the symptoms we call PMR is an autoimmune disorder that causes your immune system to attack your body in error, unable to recognise it as self, as if it were an invading bug. The damage to the body continues for a while and leaves your muscles intolerant of acute exercise. If you try to do too much - your body bites back.

I was much better, I would have said almost pain-free, within 6 hours but it was the contrast. In fact it was a few months before the bursitis and tenosynovitis pain faded. Even now, when I am pretty much pain-free, if I over do it I feel it. Unfortunately you can't go back to what was your old normal - you have a new normal which you need to come to terms with and identify. And then you have to train to improve it. There are people on the forum who were high level athletes before PMR - even they had to get into training again and a few reckon they never have got above 70% or so of their previous level. The secret is to start very very small - low level and appropriate resting. Pacing and resting are the watchwords here.

healthunlocked.com/pmrgcauk......

[Buderim in reply to PMRpro]

Thank you, I am now begging to understand more about myself and PMR.

[Rose54 in reply to Buderim]

We all go through life giving so much of ourselves to others wether its work ,friends or family but how much you time do you have .

What this illness has given me is time .

Time to take up a old hobby I am knitting again mainly for my grandson

Time to read a book

Time to just go along to a matinee at the Cinema

Time to go for a walk or do what I like to do

I am sure you will find it gives you things too .

[Buderim in reply to Rose54]

Good advice.

[Hidden]

Hi buderim, it's great you got such great relief from pmr symptoms at first. Now you need to look at what you did when that happened. I suspect like many of us you had a burst of activity catching up on things. That may well explain why it doesn't feel as good now. You need to stay active of course but need to pace yourself. There is a booklet on managing pain and pacing etc that Dorset lady posted the other day. I will find the link and post it. In the meantime, rest occasionally and explore the site and ask questions as you have to. It's a steep learning curve but if you set things up properly now in terms of pacing and tapering pred slowly you can have a good quality of life. 🌻

[Hidden in reply to Hidden]

healthunlocked.com/pmrgcauk...

[Buderim in reply to Hidden]

Thank you I have found this very helpful.

[Hidden]

Sorry you have this pmr. On the correct dose of prednisone, it took me about two months to be pain free. It took me at least a month to realize I was overdoing it, keeping me in pain probably longer than should have been. My learning was that if you were active, do not do anything but easy walking until you understand what your baseline to exercise is. Do that for at least two weeks, then you can start adding very little to your baseline. As others have said you have a new you in regards to being active. Overdoing it will nite you and bite hard

[Buderim in reply to Hidden]

Thank you. I think that I was thinking that I had had a miracle cure I am now understanding the problem much more.

[bakingD]

Hi

I was diagnosed with PMR a year ago and felt relief from steroids after 2 hours- however for quite a few months I had to be really careful not to overdo it- if I did too much I would feel awful and had several flares of my symptoms needing to go back up to about 15mg of Prednisolone- about a month ago I felt a change within myself- less pain and feeling much stronger- we have a community garden where we all congregate and a few months a go I could hardly do anything whereas now am so much stronger- am now down to 4.5 mg Pred- from 10mg Pred I reduced by 1 mg a t a time and once I was down to about 6mg I reduced by 1/2 mg steps instead of 1 mg steps-everyone is different but hopefully your PMR will burn itself out in time - the fist few months a re the worst when you don't understand what's going on-this forum has helped me a lot with everyone's advice-I taken adcal and had a dexa scan - it is recommended to have one done and it is a very quick scan lasting only about 15 mins

[Buderim in reply to bakingD]

Thank you. I am now looking at this more realistically and realising that the illness is still there and more self care is needed and that it is ok to do so.

[scrambledegg]

I was diagnosed with PMR nearly 5 years ago and remember that relief after the first dose. I was on 15mg for about a month then got down to 10 mg and sadly am still on that dose although I have been down as low as 6mg but just couldn't manage on that. I am relatively pain free and luckily no serious side effects so happyish but I wish my quarterly attempts to reduce the dose would be successful. I do wonder why those who are finding it effecting their quality of life don't up their dose but if they do have side effects or are worried about long term use of steroids (as am I but at this time quality of life is more important to me) I can totally understand why. So 5 years in and still on 10mg a day sounds bad now I've seen it written down! All the academic studies seem to indicate it should only last 3 years max. but a lot of us know better. Good luck to you. I do find paracetamol first thing in the morning helps and it's fine to take with prednisolone.

[Buderim in reply to scrambledegg]

Thank you for this. I am finding so much to help in the advice from people further along this illness.

[PMRpro Ambassador in reply to scrambledegg]

No, here is an academic study that says the median duration of management with pred is 5.9 years:

medpagetoday.org/rheumatolo...

and that only 58% had discontinued pred by TEN years.

It took me over 4 years to get below 9mg and after 15 years of PMR and nearly 10 years of pred I have been on 15mg since last autumn. I needed the 15mg for an add-on to my vasculitis as well but in the last 6 weeks since getting a pacemaker I have managed to get to 12mg, possibly 11mg but that is early days yet!

[scrambledegg in reply to PMRpro]

Thanks a lot for this. I haven't come across this article before and I thought I'd done my research. I have my annual checkup with my GP next week, now I won't feel such a wimp that I still need to be on 10mg.

[SheffieldJane]

Your experience rings a bell. Nothing was as good as the euphoric early days but it was transformational. Start doses can be anything from 25 mgs to 15 mgs usually. Ensure that you are on enough, we all vary a bit. Also, you are still ill, so pace your activities - no clearing out the attic! Pred only deals with the inflammation, like a super painkiller. You still need a lot of rest.

[Buderim in reply to SheffieldJane]

Realising that I am actually ill is a big step forward for me. Thank you.

[Meggsy]

Hello Buderim,

Just wondering what dose of pred are you on?

[Buderim in reply to Meggsy]

20mg

[HamishPMR]

My advice to you is to read the posts on HealthUnlocked but try to follow the advice of the Ambassadors like DorsetLady and Poopadoop and ignore the krankies. It is also good to restrict your internet searches to our NHS and NICE.

[Buderim in reply to HamishPMR]

Thank you, will do.

[SheffieldJane in reply to HamishPMR]

I sincerely hope I’m not a crankie Hamish 😂

[Hidden in reply to HamishPMR]

A lot of the research papers from peer reviewed established profession journals inform what the NHS and nice adopt as policy and practice but I understand what you mean. It could be some random crank sitting at home recommending things....😮 Oh dear....is that me too?🤣🤣🤣

[Thelmarina]

I’m 72, nearly at 10mgs, diagnosed June 2017. I’m taking it slowly. One thing I would add is that even though PML symptoms have subsided I do have some mild aches and pains that I associate with ageing - very different from PML, so not pain free but mobile 😀

[Buderim in reply to Thelmarina]

Thank you, I am finding other people’s experiences are helping me understand what is happening to me.

[Buderim in reply to Thelmarina]

Thanks for this. I have to learn to take things slowly.

[Hidden]

I’m sorry to hear you’ve joined the PMR club, but pleased you have a diagnosis and treatment plan. This forum is an invaluable resource and one I’ve turned to many times since diagnosed last year. The advice from everyone is unfailingly honest and based on genuine experience. I can’t say I’ve found krankies to ignore.

I found (and still find it) a very challenging condition. It’s life changing because in addition to physical limitations, it’s difficult to get your head round what’s going on and rein in activity. The first big step is understanding and then accepting that you will have a new baseline for what you can do. Your head might want to do things, but your body will shout no if you do too much. Finding that balance isn’t easy. After diagnosis, I thought it would be a straight road to recovery; everyone is different and there are ups and downs along the way, but with support, it’s all manageable.

There’s a huge amount to take in and I’m sure you’ll have more questions as you come to terms with this journey we all share. You can be certain of genuine help, advice and support here, so do post any concerns or queries. Everyone’s here to help.

[Buderim in reply to Hidden]

Thanks. I have really found a great comfort in all the replies and knowledge and hope that people have written here.

[Cross-stitcher]

I was diagnosed early in April 2019, started at 15mg Pred and have now managed to taper down to 10mg. Initially, I took the Pred at around 7.00am when I first woke up (and an hour before I took any of my other pills - thyroxine, statin, blood-pressure tablet), but I found I was not pain-free until the afternoon and also could not get to sleep at night. So I switched to taking the Pred at 2.00 am (as I was often awake then anyway), without food but with a large glass of water, and I have found that that keeps me almost completely pain-free all day. Others have found that splitting the dose (10 mg in the morning, 5mg in the evening) works for them. Some folk find they need to eat something with their Pred (e.g. yoghurt), others like me seem to have no stomach problems. We are all different. I for instance have had no swollen face or weight gain, but my insomnia is definitely worse on Pred. So what I saying is, read as much on this forum as you can, try different ways and times of taking your Pred, and don't think that the NHS or NICE have all the definitive answers !!

[SlackerPMRmom]

I was just diagnosed with PMR April 2019. I started out at 20 mg for two weeks, 15mg for two weeks. and then down to 12.5 for two weeks. After about a week I could not move my shoulders/arms. The doctors had me go back up to 15 mg for two more weeks. Now every 2 weeks I taper down 1 mg until I get to 10 mg . After that, I taper down 1 mg every 4 weeks until I get to 1 mg. I stay at that dose for about 1-1-1/2 years. From this forum and my doctors, I understand slow and steady is the way to go. I do physical work in the mornings and feel no pain. The only side affects I have encountered is high energy. I have changed my diet to no alcohol 🙁, low carb, no sweets, higher protein and have actually lost weight. I love my Fitbit, btw! I am 56 so it is about time I jump on the healthier bandwagon. Be strong, hang in there, ask questions and keep in touch!

[Buderim in reply to SlackerPMRmom]

Thank you, all so helpful.

[PMRCanada]

Welcome to the forum. Many have already responded with some great information.

My experience was that within 8 hours of my initial dose (20mg) I was able to walk around my pool deck and sleep so much better. With the welcomed pain relief I launched into renovations and activities that caused sore muscles and stiffness, so I’ve learned now how to slowly return to physical activities and exercise. I’ve flared twice and after a year I’m currently at 9.5/9.

In the beginning, after diagnosis, it took me some time to accept my fate. I felt a range of emotions, and wanted to control more of what was happening to my body. Alas, I surrendered to the fact I’d be dealing with this for years, not months. I did take control of the things I could like my diet (lost 30 lbs, reduced high bp meds), when and how I exercised, rested, etc. My therapist was a great help during this time.

I read everything I could get my hands on about PMR, and this forum was very helpful. Armed with this info I could better navigate appointments with medical professionals, including a rheumy I saw 3 times and then dropped as she was horrid and superior and caused a flare making me follow her textbook taper.

Listen to your body and learn. That’s how I arrived at my current split dose which provides almost 100% of any PMR symptoms.

You are not alone in this. We’re right here living our experience with this condition, just like you, so we “get it”. Keep us updated and ask anything.

[Buderim in reply to PMRCanada]

Thank you so much for this. I am already grasping that it is a real condition and that one has to take care and be kind to oneself, not always an easy thing to see

[V1a4]

Some really good advice here. I learned the hard way to pace myself having been on Pred for eighteen months now. I felt really well and so, as you do, began getting back to real housework - scrubbing tiles in the shower room, getting up a ladder to clean and clear out kitchen cupboards - then boom(!) had a really bad relapse. As a 76 year old, I really should have known better, of course, but age is just a number! But PMR means I have to really pace myself, ask for help when I need it, and realise that it is an illness not to be taken lightly. A little light dusting isn't usually me, but it is the PMR me and I'm learning to respect that - washing a floor today was enough, another job tomorrow!

Good luck to you xx

[Buderim in reply to V1a4]

Thanks for this. I really think that I was convinced that the Pred was the miracle cure but I now know differently. I have been so grateful to all the people who have replied and given first hand info on how they have coped. I now realise that I have an illness rather than a few aches and pains.

[PMRpro Ambassador in reply to Buderim]

Not a cure - but an excellent management tool.

[Weegie51]

I remember the feeling 3 years ago after taking 15mg pred for the first time-I had my life back! I got back to at least 95% of my level of activity, but had to learn the difference of post exercise ache and pmr flare. Now straddling 3 or 4 mg pred daily and trying to manage fatigue-come on those adrenals!

[Tiffany2]

I am 70 and was diagnosed 3 weeks ago with PMR and was put on 15 mgs of Prednisone. It took to day 12 just to take the edge of my pain. I was referred to a Rheumatologist who I saw yesterday. She has ordered more blood tests, upped my tablets to 25mgs for 2 weeks and then I see her. She is not convinced it's PMR but maybe RA or Lupus!

[CSMM]

Hi I started on 15 mg after week felt so much better but still not able to do dome things then the doctor upped meds to 20mg I felt fantastic my asthma controlled and chronic rhinitis gone I can smell for first time in 36 years magic 👍 now I’m down to 15 mg I’m aching but just getting on with it still one thousand times better than I was I could never describe to anyone who hadn’t got this rotten PMR the pain I felt for 3 months 😩 hope your feeling better every day

[PMRpro Ambassador in reply to CSMM]

Careful - dont just keep on ploughing on with the pred reduction. If you start to develop symptoms it is better to stop for a month or two and see if it improves. You are never reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms NOW as well as when you started. It doesn't mean you are stuck there, it will get lower, but sometimes it just takes a bit of patience.

[CSMM]

Thank you for that my doc is going by the bloods and not really by how I feel I’m supposed to start 12.5 on the 30th June we will see how that’s goes fingers crossed. Any advice is great 👍

[PMRpro Ambassador in reply to CSMM]

Symptoms ALWAYS trump lab values - they can lag behind any return of inflammation and in some people never rise again while they are taking any pred for some reason.

[CSMM]

Thank you for this 👍