BY 7 pm i was doing so much better. ALL my aches and pains were much reduced. However this morning I am hurting again -not quite as bad. Is this how it goes?I guess i just expected to feel better each day.
no Douglas…this is a REAL process! I found that out the hard way. started at 15mg pred in May and am only down to 12mg in Nov!
it’s been quite an “interesting” journey so far!
best advice? hang in there!
hi Douglas, similar thing to me when i first started with 15mg of pred. advised to split the dose. EG
10mg am and 5mg night. It worked for me. Good luck.
thankyou. i started on 30 mg.
yesterday. i could barely walk in the morning as pr seeme to attack an old knee injury . i was hoping for a quick fix i guess.
MARG,
thank you.. I will talk to my gp and ask to split the dose.
A new batch of inflammatory substances is shed in the body each morning about 4-4.30am. As a result you develop early morning stiffness that will last until the new dose of pred kicks in. That is why it helps to take it as soon as you can in the morning - the sooner after 4am the less inflammation will have developed so the less there is for the pred to do. Another factor is that the antiinflammatory effect of pred lasts for between 12 and 36 hours depending on the person - if you are towards the 12 hour end you will feel it in the mornings more than someone who is nearer the 36 hour end. That can be helped for some by splitting the dose, about 2/3 in the morning and the rest later in the day and that prolongs the effect to the next morning.
The pred hasn’t cured anything - this is an ongoing process. First you do a spring clean with the higher doses of pred and then you find the lowest level that keeps the inflammation cleared up each day. But you are right - you should feel some better each day and you may even get to a point where you are OK for 24 hours even without splitting the dose. But don’t go rushing around as if you are back to normal because you aren’t - overdo things and you will suffer next day!
You are probably better to wait a few days and see how you get on - as I explained in my other post. THEN try a few days splitting the dose and THEN ask them. Some doctors think it is not a good idea, some even claim it is dangerous (no it isn’t) and others take the huff at patients wanting to take some form of control. What they don’t know won’t upset them ![]()
HI THERE DOUGLAS
EILEEN IS THE EXPERT on this forum REGARDING PMR AND GCA …
EILEEN HAS MORE KNOWLEDGE ABOUT PMR THAN MOST RHEUMIES AND DOCTORS …
HER ADVICE IS VERY VERY GOOD …
Eileen,
Just read your post. Thank you for the info and suggestions. I have taken 30 mg after breakfast at 6 am for 2 days now and pnly noticed feeeling better around 2 pm. AND woke up last night around 2:30 with pain in my knee and very stiff in the shoulders. SO i may try taking 20 mg at 2 am and 10 mg at noon. Does that sound about right?
doug
Douglas, I solved that problem by splitting my dosage. Take the largest percentage after breakfast and the rest at bedtime. This worked very well on the large dosage and I have found not necessary on smaller dosages. I think you have to play around and find out what works for you. ![]()
Douglas, I solved that problem by splitting my dosage. Take the largest percentage after breakfast and the rest at bedtime. This worked very well on the large dosage and I have found not necessary on smaller dosages. I think you have to play around and find out what works for you. ![]()
You may need to experiment a bit - the 10mg at noon may be late enough - it may not. You just have to try it out.
i started on pred 15mg 2 years ago now down to 3 mg its a slow process, you will get there in the end.
Hi Douglas,
if it helps I am a doctor with PMR. I have been on steroids for around 6 weeks now and I split the dose.
I started on 15mg which really helped the night-time pain but was not enough to clear up the morning stiffness which was really causing problems with work. I increased to once daily 20 mg which was a bit better but still left symptoms in the morning. It occurred to me that splitting the dose would make sense and shortly after I read accounts on here of folk who had done just that with good effect. Some medical colleagues were concerned that night-time doseage would increase the suppressive effects on the body’s natural cortisol secreting system but to be honest you are likely to be on steroids for a long enough time that this is inevitable in any case. In any case if splitting avoids having to increase the total dose to get control that is likely to be a lot better for you in the long run. Others cautioned that night time doses caused insomnia in their patients treated for other conditions but not in my experience especially when you have know what untreated PMR can do for your sleep.
I ended up with a split of 15mg in the morning and 5mg last thing at night which made me essentially symptom free. After around a month at that level I have just tried reducing the evening dose to 4mg so far without problems.
The Radman
Good morning, I have been on pred for 2 years, I have always split mine up, reduced from 15mg down to 3mg I take 2 with dinner at night and 1 in the morning with breakfast after I have had a work out in the gym at 06.30 hrs. But I found that they take about 5 hours to kick in on me, this means I get a good nights sleep and wake up in the morning ok. In the morning just take the 1mg and keep active this keeps the pain away. It works for me, I am hoping by the end of 2019 I will be off them all together.
MY age does not help being in my 70’s
From general experience you might find keeping the nighttime dose stable and reducing the morning dose works for longer.
And do please keep talking the talk to your colleagues!!! They might be converted - and make life easier for many patients!!!
I just saw another doctor, an internal medicine doctor, who half diagnosed me with PMR. At least he is aware of the condition. However, even though I present with all the symptoms he isn’t convinced that is what it is. The fact that I told him my left arm is worse has him convinced it could be rotator cuff. I have never heard of anyone having butt and hip pain, sore calf muscles, etc with that! I have been on 2 --20 day regimen of pred. tapering 10 mg every 5 days starting with 40 and going down to 10. I kept data and the pain was better at 40 and increased as I got down to 10. His rationale for thinking it may not be PMR was that at a dose of 40 I should have been pain free. I argued that it was only for 5 days so I feel that maybe that would be the case if I were on for a couple of weeks. None the less, he did give me a 30 day script of 20mg to take and is going to fast track me to see a rheumatologist. The usual wait is approximately 9 months. How long should I take this dose if it works before I start to taper down? How will I know if the 20 mg isn’t enough? He seems to think I should have no pain. I tried to explain to him that the pain and stiffness goes away around 10:00 or 11:00; but the pain never goes away completely. I am just able to move better.
Why on earth can’t they go about things properly? And understand the way PMR works?
What time do you take the pred dose? Every morning the body sheds a new batch of inflammatory substances about 4.30am-ish. They cause inflammation and new symptoms - and the sooner after that you take the pred the less it has to do and the sooner you will get relief of the symptoms. Pred takes a good couple of hours to work in anyone, it may take longer in others. Some people are never totally free of pain and it also depends what pain it is. If you have tendonitis and/or bursitis it will take longer to fade - my hip and foot pain took a good 5 months to go away. In some people the anti-inflammatory effect of steroids doesn’t last a full 24 hours - it varies from 12 to 36 hours. If you are at the shorter end of the spectrum you will have pain in the morning before the new dose of pred kicks in. It is very common.
If it were me, I would try the 20mg split into 15mg in the morning and the rest later so the effect lasts longer - and that may improve the morning pain. Try it before telling the doc…
This describes a fair approach to managing PMR:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
and this:
recommends a starting dose of up to 25mg, exceptionally 30mg.
So you need to stick at 20mg for at least a month, possibly 6 weeks. And, to boot, you need to rest in the meantime. As long as there is inflammation it will worsen if you use the affected areas - especially the bursitis in hips and shoulders.
I do hope you get into the hands of someone sensible soon - because how can you blame all that you have on a damaged rotator cuff!!!
I did try reducing the morning dose by one first but this did lead to a mild recurrence of symptoms which l had to go back to 20 mg to suppress. This way round seems to be working for me so far, I think the next attempted 1mg reduction should be via the morning dose however.