I am new to this as I was only diagnosed 3 weeks ago so am just looking for a bit of info. I am taking prednisalone which is definately helping but only for a limited time. When I get up in the morning everything hurts ( not as bad as before I started the pred but definately very noticable). I take my pills at breakfast and the pain wears off in about 4/5 hours and I feel quite good for the rest of the day. Unfortunately when I get up the next day it all hurts again. I'm just wondering if this is normal or should the steroids be keeping the pain at bay for longer ? Any help would be much appreciated.
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lindtbunnynut
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I'm writing this repy assuming you have been diagnosed with PMR. If it is GCA which is suspected you need to seek medical advice asap.
What has been your starting dose? It's possible that you need to take a bit more for a couple of weeks but you'd need to consult with your doctor. Usually we are given a course of about a week at the standard starting dose of 15 or 20 mg and the expectation is within a few days we should experience at least (and usually more) 70% improvement. This rapid improvement is one of the tools doctors use to confirm a PMR diagnosis. The improvement may not last through the entire 24 hours, but you should still be feeling noticeably better at the time you take your next dose, i.e. not always returning to square one every day.
I was given 15mg for the 1st week and it was quite amazing the difference it made which is why as you say he is sure it is PMR. Then for 2 weeks it was 12.5 which still wasn't bad for most of the day but as I said it is quite painful in the mornings for a few hours until the pills seem to kick in again.
Well, there's your answer then. You should have been left at 15 mg for at least a month, some say 6 weeks (I was at 15 for 5 weeks) before starting a slow taper. Some people manage that initial 2.5 taper but it really is safer to taper by 1 mg at a time. (Again, my experience, 1 mg per week for about four weeks, then I slowed down. Be aware that we are all different!) And by the time you get to 10 you need to be on every dose for a month, and perhaps using one of our slow taper methods and not dropping by more than .5 mg at a time.
You will undoubtedly need to go back to the place where you last felt well and get the inflammation properly under control. Staying at a dose long enough to stay painfree will result in a lower total intake of pred over time as you will avoid flares which require higher doses.
This is not a short term treatment. Pred only controls the symptoms it does not "cure" the disease. PMR will go into natural remission in it's own good time, in the meantime you work on finding the lowest possible dose which still controls the symptoms so you can have good quality of life.
Hi..I was i was started at 20 mg. for 2 months then tapered 1 mg every two weeks. It went well. I am now at 5 mg. Maybe a twinge in upper arm in morning but not really “pain”. I think it is normal, as I reduce dose, to feel a twinge for a day or two as my body adjusts.
I started 15mg 3 months ago and now at 5mg and going great. Dropping 1mg every week recently in 0.1mg steps with week in between to stabilise. Slight stiffness in hamstrings in mornings now but not surprising as I’m a runner and run 8 miles 4 x a week including sprinting up steep hills. No stiffness in shoulders or malaise which was the PMR giveaway for me.
One would hope the affect of the drugs would last 24hours, but very often it doesn’t for a variety of reasons -
a. You are not taking a high enough dose - what are you on? do you have PMR or GCA or both?
b. Your body is not getting the full benefit of the dose,
c. You are trying to do too much. Just because you’ve started Pred doesn’t mean you are cured. You aren’t, all the Pred is doing is helping to control the inflammation caused by illness. You still have PMR or GCA and that affects your whole system. Why you hurt in the morning is because that inflammation (which causes you pain) is shed every day around 4am.
Are you taking the plain white tablets or a coloured coated variety - they vary in how long they take to get into your system.
Have a read if this link, it might help you understand a bit better. Others will be along with more advice idc -
Yes it is PMR. I was given 15 mg for the 1st week then 12.5 for the last 2 weeks but today he wanted me to go to 10 for the next 8 weeks. They are the uncoated white tablets. I've been off work for the last 3 weeks and am trying to rest but although the pain is nowhere near as bad as it was at the start it never quite goes away and as I said it gets worse when I get up. I thought it would be getting a bit better by now but I seem to keep going back to square 1.
You should be on the initial dose for at least 3 weeks- although 4 is better. It can take that long for the pre diagnosis inflammation to be cleared. Then the dose should adequate to control the new inflammation produced on a daily basis.
I’m afraid it won’t go away on the regime the doctor has given you.
You need to go back to 15mg - sort things out (2-3 weeks may do it) and then reduce more slowly.
You really need to be at each dose for 2-3 weeks minimum to ensure that dose is sufficient before you drop.
At the rate your doctor suggests you aren’t being allowed to do that.
Although 15-12.5-10mg is a recognised taper - not everyone can achieve that - especially if you are going back to work.
Your doctor is being overly optimistic - and you are the one who will suffer. You need to discuss this with him - I don’t think he knows much about PMR.
Thank you. I will see if I can get to speak to him about the dose. I'm back at work next week but am on holiday the week after so don't want to be in pain for the whole time.
The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. So for some people the effect will last until the next dose is due, providing they are on a high enough dose. The rest has been said - you needed to be at 15mg for a month at least, many doctors say 6 weeks.
This paper may help you educate your GP (it was written for GPs):
Does your doctor realise that PMR is a chronic illness that needs a median duration of management with pred of just under 6 years? Only 1 in 5 get off pred in a year, about a third in 2 years. There is no rush with the taper!
When I was diagnosed in Jan 2018, the 15 mgs worked like a charm. After one month, I reduced to 12.5 mgs for a month, then 11 mgs, then I began to taper using Dorsetlady's taper method, (thanks DL!) and I also only reduced by .5mgs each month. Here in September 2019 I am at 2.5 mgs and will continue this plan and reduce slowly by .5 mgs.
As HeronNS says, we are all different. I am not working, but my DH is physically handicapped so there can be moments. I just wanted to give you a hint at what my doc thinks is really good.
This site will be a great source of info for you regarding supplements, diet, limited exercise, dexascans, and just a whole bunch of really good info from a steady stable group who will cheer you on. Good luck with your journey.
Thank you. I'm trying to contact my consultant but if not I think I'm going to put it back up again anyway until I see him again on 28th. Thanks everyone for all your help
Hi and welcome! Yes agree you need to up your dose. Also, like you I originally took my pred with breakfast, but body wasn’t functioning till about 3 hours later, so then began taking it at 4 am and problem solved. All the best 🌻
Pharmacists say even just a glass of milk or a yoghurt is enough. It doesn't have to be 4am - setting an alarm for 2 hours before you intend to get up will do. Take the pills with a sandwich or yoghurt - they will be fine without the fridge if you choose the right filling - and settle down for another couple of hours by which time the pred will be working.
It is a balance of strength of dose, bioavailability, and watching how much activity you partake in.
It took me a number of months to settle in at the correct dose to address the inflammation, establish a split dose (2/3 of dose in coated capsule at 11:30pm and 1/3 of dose uncoated tablets at 12noon with lunch). This method of taking my pred eliminates the morning stiffness and tenderness, but always discuss this with your Dr. I’ve increased my weekly physical activity slowly, and ensure I rest the days in between.
Of note, I stayed at my initial dose of 20mg for 3 weeks, but when my former rheumy instructed me to drop from 15 down to 12.5, it was too big of a drop, and I flared. That meant going back up to 15 for 6 weeks. So I am learning to listen to my body/symptoms which is the main factor that impacts my tapering schedule.
As others have said, no rush, that can result in having to increase the dose. You will get there, and we will be here to listen and support along the way.
I have another couple of questions which may sound pretty stupid but as I said I'm just trying to get to grips with all this.
Firstly ever since this started about 6 weeks ago I have had a dry cough - not even a cough really - just an irritating tickle which makes me want to clear my throat a lot. Has anyone had anything similar or is it just a coincidence it all happened at the same time ?
Secondly my consultant told me to just keep an eye out for any signs of GCA. I don't have any scalp or jaw pain at all but I am always prone to niggly headaches particularly in hot or humid weather so am worried I might not realise it's a different headache. I'm giving myself a headache worrying if I might have a headache.... Will I know if it's anything to worry about ?
You would probably be best asking this as a new thread as then more people will see it and respond.
There are no stupid questions - I know a lot of answers after 10+ years in the field, but why should you?
A tickly cough CAN be a sign that arteries in the chest are involved. I had a sore throat and cough from early in my PMR journey which does improve with higher doses of pred and I also had scalp pain and jaw claudication pain for some weeks which then resolved (without pred at that stage). The consensus is I did have large vessel vasculitis but it stopped of its own accord just leaving PMR.
Most people would say the headache is like no other they have ever had - but in fact only about half of GCA patients start with a headache although about 70% do at some point. Position is important - around the temples or low at the back of the head are likely places - occipital is the medical term, where the knowledge bump is.
What other symptoms did he mention? We now know our ears can be involved so watch out for hearing loss or vertigo/poor balance.
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i dont know what is going on!!!!!
Is this GCA ?
Does this all sound normal?
