Hello. I’ve joined here because it is mentioned in many of the sources I haven been using trying to make sense of what I’m going through.
So I’m newly diagnosed and on day 6 of prednisolone. My symptoms are so much better in the afternoons and evenings but I’m still in so much pain and have very little mobility from about 3am till midday. I’m taking the meds at 9am but I’m uneducated (though rapidly educating myself now!) on steroids.
Is my dose too low to cover me for 24hrs or is this just natural that they can’t be effective for 24hrs?
I am 53 and otherwise healthy.
I drink very little alcohol but do smoke.
I eat very little sugar but do overindulge in carbs. I am conscious I need to address this.
Any tips for how to both physically and mentally cope with the stage I’m at? The euphoria of it not being a terminal illness has worn off and I’m very weepy reading all about this and also mentally overloaded trying to get a grip on things.
Many thanks in advance and huge sympathies to fellow sufferers.
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NewPMR53
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Maybe have a look at this intro post. Which will cover some of the things you mention- and all are fairly normal.
Perhaps you aren’t on quite enough Pred -but only 6 days it’s a bit difficult to tell -and you need to realise it’s not just a matter of taking the meds and everything is tickety -boo..
I did read this on Friday but have been overdosing on Myhill and Kate Gilbert and hence forgetting things! Just re-read though and it is so useful thank you.
Hi and welcome! It is overwhelming but it will improve, we promise! The pred will be making the emotional response even worse so don't worry too much about it.
Kate Gilbert's book, like everything you meet on this forum, is based on personal experience and the expert literature. My own person opinion would be to ditch Myhill - she has been stopped from practising as a GP for using rather dubious science. And she is out to sell her products and make money.
You ask is your dose too low, but don't say what you are on, oops. just looked at your profile, 15mg. Yes, it may not be quite enough or you need a bit longer. Have a read of this thread - it all applies for you too:
For the moment. I'd suggest trying taking it much earlier, the sooner after 4am you take it, the less inflammation is able to develop and that alone helps. At present the inflammatory substances have 5 hours to get going and create more inflammation for the pred to clear out. Try that first - see what it does and we'll work from there.
Have you reduced your activity level? Movement is good but not too much.
And I am going to address the elephant in the room: there won't be a better time in your life to stop smoking! Part of the problem in PMR is thought by many to be a problem with oxygen supply to the tissues - and smoking makes that far far worse as within seconds of that first inhale, the capillaries in the muscles tighten and narrow so even less oxygen gets to them.
The main problem with carbs will be if you gain weight with pred - some do, some don't - and you may develop steroid induced diabetes. That and smoking really will be a problem double whammy. Cutting carbs should help with the cravings that pred causes and make it easier once you get the hang of it.
Any questions, just ask. You aren't on your own with this - lots of us around.
Thank you so much - this group is going to be a mental lifeline for me I can tell already!
Smoking - I know. I really do know. I keep saying to myself that I’m coping with enough at the moment and adding quitting smoking on top of all this feels just too much. But I also know that’s my smokers brain clinging to any excuse for now not being the time.
That’s understandable - you feel you want to keep things as normal as they were….but if you can quite, it will help. But from living with my late hubby for nearly 50 years, you have to be in the correct mindset… he always said ‘I can’t give it up’… so I didn’t push him, much as I wanted to!
After he had a triple bypass, he said ‘ I am going to give it up, I’ve been given my life back, so it would be selfish if I undid all the work, time and money the surgeon and the NHS have invested in me . .. and he did… for next 17 years.
I know your situation is not the same, but you can do it… when you feel the time is right.
The nurse at our surgery persuaded my husband to try the NHS quit smoking program. Uses nicotine patches and inhalators with lots of support from the nurse through phone calls and f2f appointments. He has smoked since he was 14 ( now 63) and I have been totally amazed at how well he did. Three months later he has been declared an ex smoker. It is definitely worth a try - much too difficult to do on your own. Good luck with your journey xx
Will move the Pred forward then having read your message and the thread you linked. My husband gets up at 4.30 so it’s not even a faff to take them then ‘luckily’.
My activity level is hugely reduced. During the diagnosis five weeks I became unable to walk very far and what I could manage was at such a slow pace I think a snail would have overtaken me. I am slowly doing a bit more but pain kicks in very quickly so it’s slow going but I will not overdo it.
Seeing doc on weds so will change time for meds and discuss re dosage.
if you are getting more pain on activity, then in my opinion the dose is almost certainly too low, The 2015 Recommendations say "the lowest effective dose in the range 12.5 to 25mg" so there is room for manoeuvre.
As both PMRpro and I said said.. 15mg probably not quite enough… and although it’s is the seeming preferred dose to start, it’s not for everyone. It can be a very fine balancing act….but you do need enough early to to clear out the existing built up inflammation - and unfortunately that’s not the same level for all..
I really think that your dose is too low,maybe ask about increasing it.I started on 60mgs,which im told is far too high, but i was grateful for anything and for someone to believe me,that i just did as i was told.Ivegot to say within 4 hours of taking it ,the pain was almost gone and gone completely over the next few days.Now down to 1 mg and all is well,touch wood!!Hope you get that pain under control.
I have no idea...was alocum doctor and i was just so happy that someone listened and didnt think i was a drama queen( my gp did,sure he didnt believe the pain i described,said it was because id pulled a muscle in the gym!!)And it worked ,so i didnt question it.Later when id researched a bit and with help from this site ,i realised how high it was...no wonder i felt as if i was going crazy!
Mind you, to be fair, I get the decided impression that patients started on a slightly higher dose (30mg though, not 60mg) do better in the long term and it was the dose used maybe 20 years ago until they got all scared of pred. Especially since such a large proportion of "just PMR" patients have a lot more extensive disease but it is rarely identified.
I had a few days at 15mg, prescribed by temp doc, then my own doctor upped it to 30mg for a week, then 25mg for a week then I've tapered down from 20mg as per our preferences here. I'm sure the higher starting does has helped with my relatively easy journey. Also never had any pressure from my docs.
Sometimes in the US they give you a steroid pack to see how you respond. A steroid pack is several days at 60, the rapidly drops to zero within like 10 days. I wonder if that is what happened here. When I was diagnosed I was given such a pack but I had read up on PMR so I didn’t follow the pack instructions and started with 20mg.
It can be difficult in the beginning because Pred can make your mind race, give you the jitters and brain fog. It can also make you inconveniently emotional. At the same time it feels like you have to study for a degree in a subject you didn’t choose. To an extent your body will become accustomed to it and when the time is right, the dose will come down. For now you need to not overthink it if you feel all over the shop.
I am so sorry you have got PMR. It can be life changing, but it does make you think about your health and not take it for granted. I became a health fanatic and gave up gluten to stop a moon face which actually worked, possibly luck of course. Pamper yourself, smell the roses and don’t overdo things.
I can really relate to your feelings of shock and your implied relief that ‘it’ wasn’t anything ‘worse’. I started on 15mg which did make a massive difference but went up to 20mg due to morning breakthrough. Now reducing, but there is no quick fix. Good luck with your journey 🤞🏼🤞🏼🤞🏼
Hi, Welcome to this amazing resource. It is so bewildering but hopefully you will get to a point where the pain is under control. So sorry you are having such a rough time.
I was started on 15mg of Prednisolone and although that helped really well with shoulder/neck/arms pain/stiffness within a week it didn't touch the Gluteal muscles/legs which got worse in the following 2 weeks.
I asked the Dr if I could increase to 20mg per day and got big improvement within a week or so and am now virtually pain free. 🎉
In hindsight I wished I hadn't waited the 2 weeks after the shoulders/neck improved whilst symptoms got worse in hips/legs. I should've gone back to the Dr earlier.
When you are in so much pain you are bound to be incredibly upset and emotional even without factoring the Prednisolone.
I wanted to just say that for me the correct dose of Prednisolone has been amazing. Hopefully you can go back to the Dr and they will up the dose.
I really hope you get a huge improvement. 🤞🍀
I've yet to Embark on the Tapering rollercoaster but am enjoying been pain free for the moment.
I've been eating a Mediterranean diet and have noticed if I have any unrefined carbs I get stiffness/pain in my fingers the very next day (but disappears in the afternoon) and takes 4 or 5 days to go again (even when I'm not having any refined carbs).
There's so much knowledge and expertise from the amazing volunteers on here - they're so kind and helpful.
I needed 25mgs in the end to deal with the inflammation that had built up prior to diagnosis . Then Iwas able to get to 20mgs quite soon. Fortunately I had a great GP. These are early days and it takes time to adjust to the change in your life, both physically and emotionally. But we are built to survive and you will too! There is joy still to be found ❤️
It took over a month at 30 mg for me to feel much more like myself, we are all different and I suspect your dose is too low for you. Also, I am what they call a "ultrarapid metabolizer", so meds effects wear off much faster for me - and this may be the issue for you, too. I had to spit my dose up so get more round- the- clock relief . There are others here who have to do this, also. Here is link for this that I found. My close family members are they same way.
This condition is filled with experimentation, ups and downs, and learning how YOUR body responds to things. Things will get better, really they will. Keep reading and welcome to this wonderful site! Excellent info and advice here. These ladies know more than the docs, in my opinion.
Your profile suggests you only suffered symptoms in your legs, which is very unusual for PMR. Also, PMR cannot be diagnosed by raised inflammatory markers in the blood alone, because infections, injuries, and other diseases can raise them, too. You only started on 15mg of prednisolone 6 days ago, which means you are still in the trial phase: how strongly and/or rapidly you improve on a moderate dose of steroids is a clue as to whether you have an autoimmune disease or something else entirely. Many conditions do not respond to steroids, while others need much higher doses. Unless your medical history includes many more clues than you've told us about, consider yourself undiagnosed, as yet. Give the 15mg a few weeks to work.
Just edited profile to add in my other significant pain areas. I do think I’ve improved significantly but only for about 15 hours out of 24. This am was better with taking the meds at 4.30am but nervous about what time I’ll breakthrough with such an early start.
Thank you for doing that. You still lack the classic pattern of (bilateral, non-arthritic) shoulder and/or hip pain that points towards PMR. Give the 15mg of prednisolone a few weeks to work. Consider it a diagnostic trial.
BTW I dug out this study regarding the link between smoking and PMR, especially in women. The risk builds up over the long term and depends on how many packs of 20 are smoked per day: "Every 10 pack-years of smoking was associated with a 9% (95%CI 2%,16%) increase in PMR risk." Many other diseases show a similar risk profile.
Hi and welcome, PMRpro, DL and the others have said everything, so this is just a hello and don't be afraid to ask anything at anytime, there is usually someone around at all times of the day and night.
Hi. I was diagnosed with PMR in 2011 after suffering for 2 years and could hardly get out of bed anymore. My GP told me it was a wrench injury, I could hardly walk!
I saw a different GP and she knew exactly what it was, PMR. She put me on 30mgs of prednisolone and 4 hours after the first dose all the pain was lifted out of my body and I felt like a teenager again.
If you are still suffering any pain, the dose of pred isn't high enough. I believe 20mgs is the starting dose now.
If you do have breakthrough pain in the evening - probably a reason to try splitting the dose though 15 is a bit low for doing that since 10mg as the morning dose may not be anything like enough yet though you would then take the rest late morning/early afternoon.
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