I’ve just been diagnosed with PMR and am on my first week of steroids. I am very anxious about taking them and the potential side effects. They have helped hugely but I’m longing to come off them asap! Any advice would be greatly appreciated
thank you all
I think pretty well everyone who is put on steroids for PMR has the same worry. However steroids are a wonder drug, sadly with side effects, but side effects are true of an awful lot of drugs that we are offered. Taking the reductions slowly but surely is better than trying to rush off them then finding you are in a lot of pain and need to have a high dose again, which usually takes longer in the end.
Thank you
Hello. Take a deep breath. Steroids are actually your friend in spite of their bad press. Not all side effects occur and a number of them can be really helped with the right information. On the plus side Prednisolone will give back a quality of life that has probably been made worse by PMR and will prevent the negative effects of increasing and sustained immobility. It really does the job well and is currently the only medication that will comprehensively act as a safety net until your immune system stops attacking its own body.
The best bit is that you can be part of this supportive band of people who will support you all the way. We’ve all been there from the panicky first weeks and come out the other side. What will help is if you fill out your bio and say what has happened so far. Things like how it started, when you were diagnosed, what dose and reducing plan you’ve been on (if you’ve got that far!) and which country you are from. All these things will help us tailor our advice.
No doubt DorsetLady will be along with her new member welcome reply and helpful links to start your learning voyage.
Thanks
Snazzy is spot on with her advice.We were all terrified of taking the steroids when we began and the side effects that could happen but believe me when I say it's far better to cope with some of the effects your medications can cause than the effects having uncontrolled PMR will cause for you if it's not treated.
I won't say you won't get any side effects.
We all do , especially when you just start them because the body needs time to get used to processing the new chemical and using it in the best possible way to control your symptoms.
But the initial side effects calm down within days or weeks of taking them and more common side effects go as your doses get lower.
The common side effects are also very manageable by following the tips you will get from joining a group like this , like eating less sugar and white carbs and a vitamin rich lower carbohydrate diet, keeping hydrated, learning to accept that you may need to alter how busy your life is and pace your activity while you have PMR to prevent you poking the bear and causing a flare up.
We all want to get off steroids quickly too but we need to be realistic, actually more realistic than our doctors are in their tapering timetables too.
Steroids aren't a cure for your PMR they are your essential tool to help you manage the inflammation and symptoms the PMR causes.
So you can't get the pain under control then taper down off the steroids at the speed of a high power train.
The PMR will still be there like an uninvited guest and will make it's presence known with a big fat flare , like a tantruming toddler, as soon as you try to do too much or drop your dose below what you need to control it.
You need to listen to your body and slowly taper down your dose whilst doing the pacing and self care that helps the dose to work.
Usually this takes longer than your Rheumatologist or GO understand because they've never had it.
When PMR finally chooses to say goodbye you will be able to finally get off the steroids but you might have to take them, even at low doses, for a considerable amount of time before that can happen.
It's good to be honest with yourself and accept that now as it will actually help to speed up your recovery in the long run if you approach this race like the slow and steady tortoise rather than the hasty hyper hare.
Accepting you will need to change your " Old Normal" routine for sometime while you have this condition is also key . Being positive about your new slower " New Normal " of taking on less , delegating physical chores , reducing stress and mindfulness also helps to stop your mental health suffering a long the way.
Remember you are still You , the unique , amazing You that you have always been, it's just what you do that changes.
If you've always been a Doer solving all the family problems , doing all the chores , and working this can be the hardest part to get used to. But be honest with yourself and others and be willing to ask and accept a bit more help instead of giving the help for a change and this will also make your recovery much smoother and speedier too.
There's a lot to take in , too much at first but stick with this group and read old posts and post as many questions as you need and you'll be an expert at muddling through like the rest of us in the end.
I had GCA , it's in remission , I'm now steroids free (even though I've got many other health conditions that was still possible so don't be down heartened yet)
Hugs , Bee
Great reply along with'Snazzy's
That is such a helpful reply. I am exactly at that stage of struggling to accept that this illness really does mean that we have to reassess our lifestyle and make some (usually very unwanted) changes. We have always had an active lifestyle, enjoying walking the Lake District Fells, as well as cycling the country lanes or coastal routes. We also have a large garden which we are still developing, which means lots of heavy work. Until 3 months ago I was quite capable of getting stuck into that, but now I HAVE to accept that I can't (not a word previously in my vocabulary!!!) and that is really hard - it's almost like a bereavement, letting go of an essential part of you that cannot be any more - or at least for a while.
BUT, thanks to this group, you learn you are not alone, there are plenty of other people going, or having gone through, the same process, who understand and can sympathise and offer support and suggestions that may help. AND this is not a life limiting or degenerative illness, for which we should be very grateful. It does eventually burn itself out (apparently!) over varying periods of time, and life can perhaps return to a better normal again 🙃
You'll be pleased you have found this group Newbie, and do let us know how you get on.
Good luck!
Great post CJDLSR 😊
I too have found it very difficult to adapt to my new role in life - doing less and accepting more help . Sometimes I don’t feel like myself at all but I usually manage to do something positive each day, and I’m grateful for my family, friends and for the life I have.
All the best all xx
Well said. I've been on prednisone since last April. Been able to get down from 20 mg a day to currently at 8.5. I find it harder to reduce now since I got under 10. I have always been a doer and keep trying to do things I can't anymore and definitely get get trouble for it. I'm learning the hard way.
Exactly what I would have said Snazzy!
Hi and welcome!
DorsetLady will be along with her introductory post which will help you understand a lot more about PMR and steroids. But the most important thing to understand is that PMR isn't an acute illness where pred is given, it reduces the inflammation and you come off it. PMR is a chronic disorder that can carry on for some years, usually at least 2 and sometimes more. The pred has cured nothing but will be used as a management strategy to control the ongoing inflammation that is created in the body every early morning and which causes the symptoms. You need enough pred to combat that and having started at a higher dose than they hope you will need, you will now taper it SLOWLY, in small steps to find the lowest effective dose. That will vary over time, as the underlying autoimmune disorder slowly burns out and gets less there will be less inflammation and you will need less pred. But you can't rush it and if you do and go to too low a dose at any point, the inflammation will build up again and you will be back where you started. Then you will need to go back to a higher dose and start over again - so it is a very good idea NOT to rush things because you are scared of pred.
It really isn't as bad as it is often portrayed - it is a very effective medication, no-one gets all the side effects they talk about and many get very few or even none. There are lots of things that you can do to minimise any you do have and they will reduce as you taper the dose. But what it will do is reduce your pain and other symptoms and let you live a much better life. I won't say normal though - because YOU have to do your bit, changing activities and lifestyle to help manage the illness too. Pred isn't a free pass to go back to rushing around and a hectic lifestyle.
Thank you, yes I understand that the pred cures nothing and you just have to hope it goes away whilst being controlled. Having been lucky to be healthy for such a long time it’s just come as a very scary shock!
It does for many of us - and it is a sudden change so all the more scary. But PMR itself doesn't kill - so there are lots worse things to be hit by!
Hi and welcome
Been on zoom meeting this afternoon so just seen your post. As SnazzyD has said see this info post -
healthunlocked.com/pmrgcauk...
As others have said, just calm down and stop worrying about Pred -they will help you and your illness. Not as bad as they are portrayed.
Thanks just very scared at the moment 😬
I do know that …but trust the Pred it will give you a better quality of life..,and for everything else, just ask us..,
Trust the pred
Great answer
Sometimes you have to do just that… I know.😊
😆😆😆Can't stop laughing .
I heard the words , "Trust the Pred" in my head and imagined DLs spooky voice like a zen guru whispering at me from the ether!😆😆😆
I haven't gone over to the other side yet....thank you very much...😏
I wasn't suggesting that , just that you could teleport your psyche around to reassure us all like the goddess you are !😆😆😆
Well that's true, I'll give you that... scary or what..😏
have or haven't???????
Some days I really don't know...bt probably not today..😏😂
Ha.... brilliant
As piglette has said, most of us will have had a sharp intake of breath when we told we must take steroids but please know that some people have no side effects, some have several and others have none. There’s lots you can do to help yourself including what to eat and what to avoid, exercise and, most of all, pacing yourself and resting a LOT.
I’m cooking right now and something needs attention so watch for others’ suggestions. 🤞
I see you have lots😀
Hi, I'm quite new too, diagnosed in early June and quite shocked as I've had good health up to now ... I worry about steroids too but also feel lucky that there is a treatment ... when I first got the pain and stiffness I thought it might be something autoimmune without good treatment options. I'd never heard of PMR though I find its not uncommon, and several people i know have had it. I could hardly move at the start, and now I'm feeling fine. So far i did 3 weeks at 15mg, 3 weeks at 12.5 mg, 6 weeks at 10 and nearly 6 weeks at 9....no problems yet 🤞.
That’s really encouraging thank you, I’m really hoping that I can follow that path too, have you had any side effects?
no noticeable side effects so far ..... though i think some would probably only appear later on. I'm trying to be careful to have a healthy diet, keep taking exercise, and GP prescribed a calcium supplement because it can affect bone strength.
Thank you, very helpful, wishing you all the best
Good luck to you with it. I didn’t put on any weight, in fact I lost it by cutting carbs. Make sure you get your blood sugars checked as it can cause steroid induced diabetes. But do not rush to get off the pred as PMR goes when it is ready and not when you want it to.
Hang on in there, I am relatively newly diagnosed too - but am also thanks to poor initial medical advice the living proof that you should not try to get off steroids too fast. It does not end well..... Yes I have had side effects, digestion horrid (heartburn etc) body temperature all over the place - but both of those have settled over time and I have to say for me steroids are a small price to pay for being able to move and being able to live without severe pain and exhaustion. It is a great shock to go from well to not, so suddenly - in my case literally over night - so give yourself time to adjust to your new normal. No none of us wanted this and yes it is unfair and you are entitled to be scared and even angry it has happened - but thank God for steroids as without them we really would be in trouble.
Good morning and welcome to the forum. It all comes as a bit of a shock when we are told we have a disease that we have never heard of. However, there are many worse things that you can have. The possible side effects of Pred are just that, "possible", you might get some of them you get none of them. Many are also controllable with a change in diet and lifestyle. When you get some time a perusal through the FAQ's is always worthwhile, there is lot of information there so don't try and take it all in straight off.
When in doubt or worried just ask, no questions here will ever be regarded as stupid and there is always someone around to listen/chat/help.
You've come to the right place for advice and support. I was diagnosed in May this year and trying to get down my dose, have been 2 weeks into Dorset Lady's 5 week taper to 7.5mg but starting to feel niggles again so back to 8mg for another month before I think about trying again. I know from this forum that it will take time and everyones journey with PMR will be different.
Hey that's perfectly normal to worry. I did too but I know that without steroids I am physically disabled.. before being diagnosed I was using a mobility scooter to get around because I simply couldn't walk from one tiny room to another in the house (and I had to move into a bungalow to help with symptoms) without flaring up. There was no way I could leave the house without my scooter and I needed a lot of time off work because of flares, now I walk everywhere.. yes I'm still exhausted and need to chill out for a bit after work but I am able to get to work, walk around at lunch time and hold a conversation after work, I can lift things again (office supplies, boxes etc) whereas before diagnosis, before the steroids I couldn't even open a bottle of squash! I cycled to work! Cycled! That's huge!! I was becoming more and more disabled and now I am doing things that I never thought I could do again!
I'll take a bit of moon face over being pretty much housebound after 'doing a thing ' one day and need 5 to 7 days of full bed rest just to be able to do another thing and need to rest again and so on. now I can do a thing daily and rest on the weekends. I'm not cured and I struggle to do things on weekends too at the moment but I know when I don't take prednisolone I am in so much pain and cannot stay awake for the whole day without a nap every day. I find that prednisolone takes a while to work for me so I take mine with a glass of milk in the middle of the night when I get up to go for a wee (around 1am) , when I wake up at 7 I am ready to go!
I felt a bit zoomy for a couple of days and have since overdone it a bit and had a flare up because I thought yay I'm cured, but with a bit of trial and error things are going pretty well!
I don't think I'm the only one who will say that the benefits far outweigh the side effects. Also, you might not get any side effects, some people don't and if you do this is a wonderful place to ask questions just like you have today. It's such a supportive place here.
Welcome to the cool kids autoimmune club ☺️
That is a great story. You have come a long way. It must have been life changing, but sorry it took people so long to help you get there.
The wait was frustrating but worth it!!!!
Be glad steroids give relief and reduce as slowly as needed - good luck
Hello NewPMR, you've absolutely done the right thing by joining this wonderful forum! I would say that if you have a supportive GP that, plus this forum, will be all you need. It does seem that there are a few types of PMR; one seems to be over within 2 years but another seems to take much longer. I and many others on this forum have been on steroids for 7 years plus. The best advice I could give is be patient and accept that you can't do all you used to be able to do ALSO (If you don't want to gain a lot of weight go really low carb. I wish I had done that as I have gained over 15 kgs! As Daffodilia says, above, be glad that steroids exist to give you relief!!
Every Blessing and go well......
Welcome to the forum.
Don’t be in a rush to get off the steroids. Do take all the advice given here and don’t despair. I was diagnosed with PMR in 2021 and steroids changed me in a couple of days from a wreck who couldn’t turn over in bed to completely back to normal. (This isn’t so for everyone and I was one of the lucky ones). I watched my diet and took my calcium tablets and the only side effect was a slight fattening of my cheeks. Some have more of course, but this was my experience.
Following the sage advice here I tapered very very slowly and finally stopped the steroids this year. Mine was an easy journey and everyone is different. You’ll find masses of support here.
Good luck on your PMR journey. You aren’t alone. X
Hello NewPMR
I totally endorse the other comments on here. None of us wanted to be prescribed steroids, I was pretty gutted, but I soon realised that they are the only way forward.
I’ve had PMR 4.5 years and now down to 2.5mg. Believe me, I would love to be off them (&all the associated meds) but I realised a very long time ago they’re part of my life and I just get on with it.
And Don’t forget: there’s countless other meds that give side effects, none of them affect everyone.
So just try and relax and do remember there’s always people on here to reassure you so just remember that.
I feel exactly the same but I’ve been taking them for years, it’s the lesser of 2 evils, you gradually cut down anyway, I’m now taking 1 and half now, I completely stopped a few months ago and my GCA came back. Just go with the flow. 🍀
ps, I did put on a bit of weight on high dose but it was only for a very short time, I am now underweight, not dieting, and eating anything.
Hi I felt the same as you, but they really helped with pain, tried tapering off, but pain came back so had to go up to 20mg but they do work
We’ve all been there as you will learn from replies. At first steroids are the ‘bogey men’, then we start to accept them and soon they are part of our lives. It’s scary I know but we are in control of our tapering to suit our present conditions. At first I just wanted to get off them asap but now, with family stress and housing stress am happy to go slowly slowly and still feel well. So good luck with your treatment, you are not alone!
How much quality of life (QoL) did you lose to PMR? How much QoL has returned due to steroids? How much loss of QoL are you prepared to live with? Non-steroidal immunosuppressants are less reliable, take a long time to kick in, and come with their own potential side effects. Prednisone/prednisolone have become the medicine of choice for a reason.
You get used to taking steroids....2 years on I've slowly tapered down to 4/3.5mg. Listen to your body and rest when you need to, don't rush the reductions and take your vitamin D and Calcium (vitamin K2 also recommended). Build up exercise slowly (I'm back to the gym, yoga - although hips feel a bit weaker than they were 2 years ago - and can walk several miles quite easily again). My side effects were a 3k weight gain at the higher doses because I ignored the advice to reduce carbs, blurred vision and a 'moon face'. Everyone just said I looked well! I have an annual eye test and all is fine. I cut back and lost the weight and the face was back to normal at around the 8mg mark. Read as much as you can about PMR and use this forum - so much helpful advice from others although we all vary in our experiences. Wishing you the best.
Thank you for your reply, you sound fitter than I’ve ever been, even before PMR! Wishing you all the best with your journey
Hi...I am going out on a limb here, but I have had a very different experience of PMR than many of the contributors to this forum.
Many people have horrible problems with PMR and find it difficult to manage the symptoms and the side effects of the medication. It has been a long journey for them and continues to be so. I recognise and respect their accounts but they have not been the same as mine. I have been lucky, maybe I am a rare case, maybe mine wasn't really PMR in the first place, I will never know.
When I was diagnosed with PMR, last year, I was in a pretty sorry state. Exhausted from anaemia, and sleeplessness due to the constant pain, I had a CRP of 65. My rheumatologist gave me a steroid jab "to see if it would settle things down". The effect was almost instantaneous, the pain was gone and I was back to being myself again. But I relapsed within two weeks, the jab had been the final piece in the diagnostic jigsaw puzzle, I definitely had PMR and my rheumatologist started me on Prednisolone.
He put me on a quick taper starting at 15mg, then 10, then down from 10 to 5mg, one mg at a time at two week intervals. I stopped at 5mg for a month before dropping at 1mg/month until I was off it altogether. It took just eight months from starting Prednisolone to stopping. I had few side effects apart from sleeplessness at first, which I was used to anyway having been kept awake by pain previously. I didn't put on any weight (I have always been a "healthy weight") and I maintained my normal physically very active lifestyle. I have now been off the steroid for six weeks and I feel good. I hope you have a similarly positive experience. Stories like mine might be more common than it would appear, because people like myself who have few problems are less likely to be contributing to forums that offer help to those with problems. I just stumbled on this forum because I was on HealthUnlocked looking for help with a different problem. Good Luck!
Thank you, that is so encouraging and I know this might not end up being my experience but it’s great to hear a good outcome. I really appreciate all the helpful replies, I don’t know how to thank everyone altogether. Thank you all
I don’t know how to thank everyone altogether.
Just reply as you have… and those who are reading or have saved it will see..
You may be rare on this forum, but probably not so rare in the great scheme of things.
Patients who have a straightforward journey with PMR don’t need our help, so like you probably aren’t on this forum. Which then makes the true picture of PMR a bit skewed -so it’s good to hear the other side as well.
We do appreciate the forum members are probably the ones with the harder journeys - but actually many arrive here at diagnosis, long before they have a chance to discover any problems. My own rheumy. a world recognised expert in the field, is of the opinion that the short and easy journeys are for a particular form of PMR, just as RA has a reactive version that doesn't last long initially. It has been presented as a disorder that is benign, simple and short-lived and rheumies dismissed it to the GPs for care but they are now realising it isn't as simple as they thought and trying to reclaim it!
I have had an easier journey in many respects - the only pred problems I had were when on methyl pred and that was truly awful! But on prednisolone and prednisone I have few problems other than not being able to reduce the dose and every 3 years or I have a flare that isn't due to overshooting the dose I need - and I'm still on pred after 15 or 16 years. But it doesn't bother me greatly, it is just one of my pills for the day.
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