Symptoms worse as day goes on
Posted , 15 users are following.
hi all again , can I ask if anyone's symptoms get worse as the day goes on? . Because even though I do get stiff in the mornings it's seems from late afternoon pains get worse as day goes on and I struggle with day to day chores which I only can do in the mornings , thank you .
0 likes, 79 replies
geraldine93993 veronica81435
Posted
EileenH veronica81435
Posted
Geraldine: You will find you last longer if you do a bit, rest a bit all through the day. And if you get really exhausted by late afternoon - consider introducing a rest in the early afternoon. You won't function well physically or mentally when you are tired and a short rest earlier will often allow you a longer period in total when you function well.
veronica81435 EileenH
Posted
EileenH veronica81435
Posted
It is possible you have bursitis in your hips and shoulders - that responds to steroid injections better or it will take much longer than the other pain at 15mg oral pred. Mine took a good 6 months to go.
nick67069 EileenH
Posted
I also split my dose in 2 parts 2/3 in the morning and 1/3 after dinner.
Silver49 veronica81435
Posted
Anhaga Silver49
Posted
veronica81435 Silver49
Posted
rrobinson75 veronica81435
Posted
EileenH rrobinson75
Posted
rrobinson75 EileenH
Posted
EileenH rrobinson75
Posted
Then, the earlier in the morning you take it the better it can do its job. If you wait until 8 or 9am then it has far more established inflammation to deal with and it takes 2 hours to get from your mouth to the peak level in the blood. Many people get up early, say 6am, take their pred and then settle down for another couple of hours - by which time the pred is working. Once you are able to get moving gently that should improve the stiffness as well - inactivity is a great enemy, gentle exercise/activity gets the blood flow going and improves the state of your muscles.
A study showed that the optimum time to take ordinary white uncoated pred to best manage morning stiffness was 2am - so the peak pred level in the tissues is achieved by the time the inflammatory substances are shed in the body at about 4.30am. The longer you wait after that, the more inflammation has developed. It's like cleaning the floor on a wet day when the dog is out and in, you can either do it frequently and each time it is quite easy because there isn't much dirt, or you can leave it until later and then have a bigger job.
Once you have investigated that and if you are still stiff in the evening, try taking about 2/3 in the morning and then the rest about 2 hours before the stiffness usually starts. You have to experiment a bit because everyone is different. I take 5mg, effectively at 2am, and that lasts me all day, no morning stiffness, no evening stiffness. I suppose I am very lucky - but after 11 years it's about time!
rrobinson75 EileenH
Posted
EileenH rrobinson75
Posted
There is no wonder at all that your pain and stiffness came back if he tried to reduce you like that.
You should have remained at 15mg for 6 weeks or thereabout until all the existing inflammation was managed, then you should have tried a reduction to 12.5mg and stayed there for another 6 weeks if that was OK. Then 10mg. From 10mg you reduce not more than 1mg at a time and many people can't even manage that. PMR is NOT the same as other inflammatory illnesses where pred is used, it is a chronic illness and you are looking for the lowest dose that manages the symptoms. To do that accurately the reductions must small in size and not to quickly, you have to be sure the new dose is still managing things.
Here
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find a load of links to sensible reliable and founded information. In the replies part is a slow reduction scheme used by a lot of patients n the forums - very successfully.
Do I assume you are not in the UK? I was under the impression that methotrexate is only available from specialists, not GPs. Or have you already see a rheumatologist. I - and many others will agree - would say the mtx isn't needed yet - try reducing sensibly first.
rrobinson75 EileenH
Posted
Anhaga rrobinson75
Posted
Anhaga
Posted
rrobinson75 Anhaga
Posted
EileenH rrobinson75
Posted
A lot of us suspect that the patients who do get away with less are the ones who were dx'd as PMR but actually have late onset RA (LORA) which does happen fairly often. mtx definitely does nothing for PMR, if it did they'd use it as they do in RA.
Some have been able to reduce the pred dose initially but then experienced a flare - sending them back to the original high dose again and sometimes it doesn't work as well or makes the next reduction more difficult. It is possible that PMR waxes and wanes - in which case you would be able to reduce the dose of pred during a waning period - but then need more during a waxing period. There is no real proof that it was the mtx that led to the ability to reduce, it might have happened anyway.
And adding in another drug obviously adds in another set of side-effects. I suppose that if mtx doesn't make you ill there is no reason why not to try it at least but many patients try it and give up at some point. And you still probably won't be able to reduce in big steps.
Anhaga rrobinson75
Posted
veronica81435 rrobinson75
Posted
Anhaga veronica81435
Posted
EileenH veronica81435
Posted
A study was done that showed that taking 15mg pred in the morning, 8am-ish, resulted in less adrenal suppression than taking 5mg at night. So, for patients who are taking pred short-term, a few weeks maximum, it is better to take it in the morning as then the adrenals are able to start working normaly again immediately. Most people are on pred for a couple of weeks - to combat inflammation in asthma, pneumonia, other infections. It makes sense to make it as easy as possible to stop.
We are going to be on pred for months - more probably years. After a few months the adrenals have pretty much gone into hibernation whatever time you take you pred and that is why we should carry a steroid card in case we are in an accident or otherwise ill and unable to tell healthcare staff. Your adrenal glands aren't able to make that extra that we need. Even after we stop taking pred altogether it is felt it takes about a year to get back to normal. For someone who was just on it for a short time that period is thought to be about the same as they were on pred - 2 weeks, back to normal in well under a month.
Some patients might find that taking it at - say - 6am works better. When you wait until 8am the new inflammation is well established and takes longer to clear up. The optimum time to take ordinary white pred to avoid the morning stiffness is actually at 2am - shown in a study on RA patients in hospital who were given their pred at various times. But for many of us, waking early, taking our pred and settling down for another couple of hours to let it get to work before getting up also works very well. It takes up to 2 hours to get to peak level in the blood. I am on a sort of pred that you take at night, 10pm, and it automatically releases at 2am - I never have morning stiffness, I'm at the lowest dose I have ever been which is what the developers hoped, a lower dose does the same. Unfortunately it is very expensive and not generally available.
But there is absolutely no point at all taking pred at a time that does not work for you to relieve pain - you have the downsides of the side effects with no benefits.
I fully understand WHY your doctor thinks that - but he's not entirely correct.
nick67069 EileenH
Posted
I am saving your post in word doc, for later , when I get down to low dose, I think timing of taking pills is probably more critical at that time.
EileenH nick67069
Posted
I personally would suggest that if you use that approach now you may get to a lower dose faster - the slow reduction is less because the activity of the disease wanes with time, though it probably does to some extent, but more to find the end point more exactly and to reduce the effect of any change in dose on the body - it is less likely to miss its fix if the change is small. It really is worth experimenting a bit with times. We are all a bit different - but the aim is to find the lowest total dose that works for you. Apparently Mayo clinic doctors like to use the dose split into two - and that is the first time I've heard approval of that concept.
nick67069 EileenH
Posted
EileenH nick67069
Posted
All I can say is good luck.
nick67069 EileenH
Posted
nick67069 EileenH
Posted
EileenH nick67069
Posted
nick67069 EileenH
Posted
EileenH nick67069
Posted
Many people find 10mg something of a hurdle for some reason. There is a "Dead slow and nearly stop" approach that a lot of people have used very successfully to reduce without steroid withdrawal discomfort and have got far lower than with other reduction plans.
nick67069 EileenH
Posted
See I read all the stuff you send my way
EileenH nick67069
Posted