I'm currently on the start dosage of 15mg of Prednisolone as my doctor thinks I'm suffering from PMR, I've been on them for 10 days now and not really finding any benefit, sleeping & getting up in morning is a struggle and hard to even dress myself, the question I'm asking is, as the day goes on things get a little easier as I'm up and about, is this the steroids kicking in, or the fact that I'm not led down therefore not stiffing up? I was told I should be okay in the morning getting up but to be honest I'm probably worse!! I don't really want to keep chucking steroids into me if they are not working. Has anyone experience this, it's my whole body by the way not just shoulders, neck etc, I can hardly walk first thing in morning and if I drive, It's extremely hard to get out of the car! (I'm only 51). Anyone had/have this experience? Thanks
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Malcdw
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sounds as if you aren’t on a high enough dose 15mg isn’t always right for everyone.
Have a read through this for more info of what you should expect -but you do need to go back to doctor and explain the Pred is not working as well as it should be - and discuss an increase
15mg has become a standard starting dose but it is the bottom end of the recommended range and is frequently not enough,
This outlines the Guidelines where they say "the lowest effective dose in the range 12.5-25mg" and point out that the dose should be adjusted for the individual patient. This last fact is frequently forgotten.
Welcome! 20mg may do the trick. Mornings were the worst for me both pre and post PMR diagnosis. Even when I first started pred I was a bit stiff in the morning till I started splitting my daily dose.
I had a magical effect when I started steroids and could suddenly move again. You should have st least 70% improvement. I should tell your doctor that you have still got pain. They should up your dose and also check if you really have PMR.
Even if the dose is too low you should still feel some benefit instead of feeling worse. As PMR can be hard to diagnose, a good response to steroids is often interpreted as the confirmation of the diagnosis.
I suspect you need to have more investigations done, so ask to be referred to a rheumatologist preferably at a hospital with a PET CT.
15mg was not enough to quell my initial symptoms so GP increased dose to 25mg. It did the trick. Also, wondering what time you take your pred. Many people benefit by taking it around 3 or 4am so it is working it’s magic by the time you get up later. 🌻
I too am newly diagnosed with PMR and your symptoms sound like mine. Before I was diagnosed, my mornings were horrible. I felt better after I got up and moved around and used my muscles, but it was always stiff. I stood a lot as sitting was an invitation to stiffen up and I could barely get up. Nights felt like rigor mortis set into my hips and neck. I thought I was going to be wheelchair bond by the end of the year. But I went to the rheumatologist, and he started me on 10-15 mg of prednisone. I was to start at 10 and if it didn't help after a few days to increase until the stiffness and pain subsided. I ended up at 15 mg in the morning about 8 am but the night and morning were still really bad. I read where someone else split the dose, so I took 7.5 in the morning and then 7.5 in the evening. Finally, I could sleep and get up without the stiffness. Not happy about the prednisone as it has long term negative impact but at least I can enjoy today and work towards getting it down. You may need 10 in the morning and then again in the evening. It took me 2-3 days of splitting my dosing to get my night and morning stiffness to stop.
I was started on 20mg of Prednisolone when my CRP level was 50 and my symptoms improved massively after just a few days. You shouldn't feel worse after starting steroids in terms of symptom relief (although you can have side effects). That suggests either that your dose isn't high enough or that you have another illness. I think that you need to go back to your doctor as you should see a significant improvement within a couple of weeks.
welcome to the Forum. 15mgs was not enough at the start of my journey, so was upped to 20 which thankfully kicked in. Taper very very slowly, rushing it does no good and you have to start all over again......
i am 49 and diagnosed with PMR just over a year ago. 20mg Prednisolone had immediate great effect. 15mg was ok but i have always had some stiffness especoally morning. I wash pushed to taper the dose quickly and that hasn't been good even though i would like to get off the medication. Currently I am taking 4.5mg amd managing my own taper. GP had referred my to Rheumatologist but 2 appointments cancelled bu hospital now so that's hopeless and they might not add anything anyway. I have a prescribed anti-inflammatory which i use occasionally but not keen to take them too much. I started with this unable to shampoo my hair and very hard to move once in bed. Now I can do everything albeit with some stiffness that eases a bit over the day. Good luck with your progress.
I only started in March and at 15mg also and the effect was immediate. Yes maybe you need to try a higher dose but I would have thought you would have felt some benefit. Its a catch all really, if steroids work they say thats what you have and treat it as such but there are plenty more tests you can have before ruling out something else. Go back and see what the doctor says - after this time I would have expected you to feel some improvement if it was PMR
I don't think you do necessarily feel "some effect" unless the dose is enough to combat not only the daily added dollop but also be able to clear out the accumulated inflammation. For some people the latter may take some time but if the dose is too low, it is being topped up as quickly as some is being cleared away. Imagine a bucket and dripping tap: it fills it up and overflows, you can only avoid that if the tool used to scoop some out is taking out more than is being put in, That is the same thing as is used for dealing with a flare due to overshooting - first there has to be a springclean to allow things to be managed with a daily dust.
I am 64 and recently diagnosed with PMR following my 4th Covid shot. I was having stiffness and pain in my neck, shoulders, pelvis dnd knees during the night and anytime I didn’t change position- while gardening, I had a hard time standing after kneeling to weed. While driving within 30 minutes I would feel pain in my lower back and I too had trouble getting out of the car.
Without prednisone, I could move and work through the stiffness.
I started prednisone at 40 mg. My doctor expected I would be at least 90% better within a few days . Within 4 days, I was almost 100% - no more stiffness and pain. 2 weeks after starting prednisone, my C Reactive Protein was back down to normal.
Plan is 40 mg for 3 weeks, 30 mg for 2 weeks and I am going to 20 mg tomorrow.
6 weeks at 20 mg then rechecked my C Reactive Protein.
That’s been my experience - I think you should have seen more improvement. I would talk to your doctor. Good luck and take care
Remember you were started at a GCA dose - actually very high for PMR. Personally, I think it could well be a good approach - but they are so scared of pred they won't consider it.
I am worried about the prednisone and my doctor knows I hate medication. It took about a month and a half to diagnose PMR. When I noticed the pain and stiffness post-Covid shot wasn't going away and was getting worse, I reported it to my doctor, he ordered bloodwork - my CRP was high showing inflammation. During that period - about a month and a half - all I could think was "what the hell is wrong with me?" I am active and healthy?!
When he gave me the PMR diagnosis and also said he didn't think I had GCA ...I was relieved no GCA but I was overwhelmed. Though I hate steroids and want off ASAP, I agreed to treat this like a crisis and take his recommended dosage. Keep in mind I had no other information at the time so I am trusting him to guide me. I am determined to do whatever I can to make this taper successful. Looking at diet changes - moving to an anti-inflammatory diet. Sad that some people suggest giving up all coffee - I drink 1 cup decaf in morning and I don't want to give up an occasional alcoholic beverage ... but if I have to I will find substitutes.
Anyone out there drink Kombucha? We have a local brewer that makes a wonderful blueberry kombucha as well as a ginger kombucha. Thinking both would be good inflammation fighters.
You may find these things help - or not. But getting off pred depends on the underlying autoimmune disorder and I doubt there is much that will kick that into touch. As long as it is active, there will be inflammation and however little there is, if you let it go, like a dripping tap will fill a bucket sooner or later, it will mount up and you get the symptoms back.
If it is any consolation - several who developed PMR after the Covid jabs got through and off pred in a relatively short time. But there are no guarantees - whatever some rheumies might try to tell you.
I tried something different last night and took my 15mg of Pred at 3.00am and for the first time since taking them (normally take them first thing in morning) My legs and body were actually working lots better this morning, could dress myself and feel more normal instead of hardly be able to do anything first thing in morning, still not 100% by a long way but my God it did feel so much easier, so I'm now seeing how I will be later this afternoon when meds wear off, if so I assume I would need a higher dosage or split the dosage, not ideal having to take in the early ours of the morning, however because of condition I'm awake on & off all night anyway. I have noticed on here not many people have mentioned their legs, only the top half, I struggle to walk and driving is horrendous getting out the car, and currently apart from dropping my children off at school which is not far away, there is no way I would be able to drive for too long at all. Thanks and all the best.
Lots of people do have hip and leg problems - especially I think if they have problems with myofascial pain syndrome and/or greater trochanteric pain syndrome as I do. As long as that is well managed I am mobile and driving is absolutely no problem - but when it flares up I can't move never mind walk any distance. Even when the lower back is bad I can drive - the lumbar support in my tatty old car is a boon
Even now after many years I'm on over 20 Pred; you might need a higher dose. If that doesn't work then I'd ask for a referral to rheumatology for more tests as a positive response to steroids is part of the diagnosis for PMR
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