Symptoms worse as day goes on

"This is not typical behaviour for PMR, or the way Pred is normally taken,"

You might be surprised - waiting so long in the morning often results in a long period before freedom from pain. And there are quite a lot of people who split their dose, especially in the US.

How long have you been on 15mg?  I am taking 15mg but I still have some shoulder discomfort.  Fortunately my hip pain is totally gone.  

You may never become totally free from pain, even at 15mg. You are looking for the best it gets - after maybe 2 months, perhaps 3, although many doctors like to start to reduce after about 6 weeks. But if the symptoms are still improving it is better to stick at the starting dose until you are stable. 

Thank you!  It just helps to know this is not unusual.

Have you tried spliiting the dose? It works for me. Half at 08:00 and the other half 20:00.

Did you start out that way? I'm worried if I drop by half, first thing in the morning that my body will scream.

I've only been taking Pred for 3 weeks. 30mg taken at 08:00 did not work for me. I woke up in pain. Spoke to doctor and went onto 15 at 08:00 and 15mg at 20:00. It worked straight away. I felt so good after 4 days I dropped to 10/10 and have been on that for a week.  Not quite pain free, but just a few aches hardly worth noting. It worked for me.

Thank you. I may ask my doctor how I should do that.

Hi Sue , my dr told me to take them all at once , he's put me down to 12 mg now and I feel awful . On strong pain killers but I still feel very stiff . 

I get about 2 to 3 hours of some relive after taken them in the mornings .my dr dismisses thar I felt awful and just wanted me to drop the dose . Thank you Sue . I think I need to put my foot down with the dr . Best wishes , Veronica 

Hi Veronica, my pharmacist told me to Tate my pred all at once in the morning, but after having it suggested on here I tried it and haven't needed to take pain killers since.  I have recently been up to 22mg after having hip surgery but thankfully I am reducing with no problem since I take my dose twice a day, it just seems to help with pain, stiffness and I feel really well.

i have had pmr for four and a half years and been up and down the mg's.  Good luck, keep us posted.

Sue

Pain killers rarely help in PMR - pred is the painkiller by relieving the cause of the symptoms, the inflammation.

Either discuss this fully with the GP - because he is being insulting by not believing your report of your symptoms - or try a different one. And see my reply to your post above.

Everyone wakes up in pain in the morning - unless they wake before 4am! That was something I noticed in the early days of PMR. At 3.30am if I woke to go to the toilet I was fairly OK, at 5am I could barely move.

The body sheds a new supply of cytokines, the substances that cause the inflammation in the first place, at about 4.30. The optimum time to take pred is at 2am, then the blood level is at its peak as they are being shed and they are prevented from causing inflammation. If you take some pred in the evening, the antiinflammatory effect is still there - it lasts from 12-36 hours depending on the person. ne very effective way is to take 2/3 of your total dose in the morning, the rest in the evening, as that has less effect on sleep patterns. But everyone is different with regard to that. Another way is, as I've already said, to take your dose as early as possible a couple of hours before getting up - then it has time to work while it doesn't affect your daily activities.

Hi Eileen. You sound very knowledgeable! Are you medically trained? Andy

Thank you for that sound advice Sue, hope your hip feels better soon , all the best for your recovery 

Veronica 

Thank you for the advice Eileen .  😃 

I don't have an MBChB no, I have a degree in physiology - from a pre-medical school so we did a lot of medically-related stuff. Before that I worked in hospital labs and our training included all the background to the tests we did. I also worked in medical research and, in parallel, for a market research company doing clinical study reports, my task was translating the documentation from German to English. For the last 11 years I have had PMR myself (probably GCA but not affecting my vision) and for the last 6 years have been working with the support groups in the UK in a voluntary capacity. PMR is my "specialist subject" with a fair bit of knowledge of GCA. I'm also an advisor to a PMRGCA research group in the UK in an expert patient capacity. If I don't know - I know someone who does or where to look. 

Hi Eileen,

I guessed you knew what you were talking about! Knowledgeable advice is what people on these discussion groups really need and you sound like an excellent source. Do you have any useful links to the support groups or the research group you mentioned?

I'm an absolute PMR beginner, only 4 weeks since diagnosis so plenty to learn. My GP has been excellent.

Andy

Lucky you if you have a good GP - they are like hens teeth! If you get one - hang onto them!

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Then ask specific questions. Can't give you links directly to the research group though as I don't have any that are "free to air" - blasted pay walls!

Thank you so much.  If anyone has a poor GP ask for a referral to the Rheumatology Dept at the nearest hosp as they are experienced and deal with this all the time.

Thank you for this but doesn't this mean eating something in bed in

the small hours before taking the small dose of Pred?

Thanks very much!

Which may help - or it may not. I had a poor experience with 2 rheumies at the local hospital, 10 years ago, 6 years ago and I gather from someone sent there this winter that it isn't any better. A different GP in the practice was far more helpful for me and this other person has been directed to a different local hospital where they are very good.

To be honest,it very much depends on you. In the rest of Europe they don't make half the fuss about stomach protection they do in the UK! The study was done in Germany. A glass of milk is mostly enough to cushion your stomach, if you are already on a PPI it won't make a lot of difference and quite a few people have found eating an organic yoghurt with added cultures just as good as a PPI. And not all of them took the yoghurt at the same time as the pred. I took plain white Medrol tabs and the one side effect I didn't have was stomach problems! They might have been preferable...

Hi Eileen, thank you very much for this tip re yoghurt and milk before Pred.  I had been taking stomach protector before breakfast.   Took 20mg at 6am with piece of toast today and was able to get up and down stairs much better and pain free from 9am.  Am now going to take the 10mg at 5pm to see if I can get through the night better.  Otherwise might try splitting 15mg and 15mg if not. Trial and errror but now have the confidence to try.

about yogurt...I always take few table sppons of yogurt at the time I take pills regardless if I had a meel or not.  It is important expecially if you are taking antibiotics, since they kill all the good bacterias in the stomack. Yogurt  helps in restoring the balance.

Note: we make our own yogurt. I know it can get complicated, because it requires ( usually) temperature higher then room temperature to ferment.  However, we have found a special kind of yogurt, "kaspian" that ferments at room temperature. Making kaspian yogurt is very simple - one does not need to boil or warm up milk.. just put  starter inthe container and stir while you add milk.

sry about spelling errors...english is not my first language ... but you know what they say... a man that cannot spell the word in more then one way has no imagination

Hi Eileen

The yog tip is a really good one for taking in bed early.  I split my dose yesterday and took 20mg at 6am while I could harldly walk from pain all over.  By 9am I was pain free for the day.    I then took 10mg at 5pm and have remained pain free all night.  Could get up and walk up and down stairs with no problems at all.  What a lift.  All I was told was at the hosp "Don't split the dose or the sleep will be disrupted".  I would rather have a disrupted pain free night than be lying there in agony from 1a onwards. Thanks everyone who suggested splitting the dose as this morning I feel a new person!!  I think the Drs should suggest different ways of taking Pred but they don't seem to.

I really doubt you need 30mg in that case - and you know, 30mg once a day is quite enough to disturb sleep!

I think they are taught high doses of pred disturb sleep patterns, so tell patients to take as early in the day as possible so the effect has worn off by bedtime. Except in practice it doesn't work like that anyway, it depends on the patient, and in PMR all the usual pred rules don't really apply - the aim isn't to treat an infection/asthma and use pred to reduce existing swelling, it's ongoing relief of the swelling and that manages the pain and stiffness. Use it properly and you can reduce the dose considerably.

Thank you for you response Eileen. I think I had to be on 30mg 4 weeks ago because of my very high CRP of 63.  I have a blood test tomorrow to see what is going on now and GP will call me on Thursday.  Do you know if the GP wants to see the CRP down before reducing me to 25mg? Hosp tried to reduce me after a week on 30mg to 20mg with no blood test and I felt so awful at night, I had to go up to 30mg again.  I know it's all experimenting with the dose as no hard and fast rules. But to have a pain free night after weeks is indeed a huge boost.  Thank you again for your tips - much appreciated.

I suppose he may do - although to be honest there doesn't seem to really be a correlation between the level of the CRP and the amount of inflammation/dose required to reduce it. A slightly lower dose will work given time and just because the level is high it doesn't mean you have GCA, which is where a high dose is used to avoid the risk of loss of sight - but usually there will be other signs of that. 

The probably reason you felt so awful would be a far too precipitate reduction in dose - that was 33%! Even after a week it would be enough to make you feel pretty foul. Top US rheumies suggested years ago that reductions shouldn't me more than 10% of the current dose to minimise the steroid withdrawal effect and some people even struggle with that. 

The antiinflammatory effect of pred lasts 12-36 hours, depending on the person. If you are a 12 hour person you would start to feel pretty uncomfortable at night too. Even with 30mg the antiinflammatory effect would be waning after your evening meal - and by splitting the dose you are cancelling that effect.

Hi Eileen , sorry took a while getting back to you . That's very interesting . I'm in the uk too. 11 years that is a long time. It's a strange diseases isn't it. My Rhumatologist said your have it for 2 to 3 years and it will go with the steroids . I was thinking well how does he know that !  Not everyone is the same. How is yours now ? Very best wishes , Veronica 

He doesn't know his facts either - about a quarter of patients are able to get off pred in a couple of years but they are also more likely to develop another bout later. About half take up to 4-6 years.

And NO, IT DOES NOT GO WITH STEROIDS! The steroids manage the symptoms, it reduces the inflammation which is what causes the pain and stiffness. It has no effect on the underlying autoimmune disorder that causes the immune system to attack the walls of the blood vessels and damage the cells. It is now thought that we may know how the pred works in PMR/GCA, it acts on white blood cells called neutrophils and they are implicated in GCA and other forms of vasculitis. But that doesn't tell us what goes wrong with the immune system or how to stop it/cure it.

Saying it will go with the pred is like telling someone with Type 1 diabetes that the diabetes will go with the insulin - same thing, insulin manages the problem, it doesn't make the pancreas start producing insulin again. Or that your raised BP will go away with the tabletsyou take to ocntrol it - no it doesn't, stop the tablets and the raised bP will return if the underlying cause hasn't been removed.

My PMR? Is very well managed on 5mg of a version of pred called Lodotra which you take at night so it is already working in the morning. This is the lowest dose I've been on that works for me - I tried lower, 4mg is OK but at 3.5mg my hands start to ache again. But above all I am dead tired - I feel pretty good at 5mg and my GP, who is rheumatology trained, is perfectly happy for me to stay there. The PMR doesn't stop me doing much.