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 .
I find towards late afternoon or early eveing my symptons get a lot worse, I also tire very easy as well. Come 6pm I am fit for bed most days.
Apart from the usual point of pacing yourself to last through the day (google the Spoon theory by Christina Miseriando) - it is quite possible either that you are not on quite high enough dose to keep you symptom-free for the whole day or that you are one of the "12 hour" people and the antiinflammatory effect doesn't carry through the day. You get rid of most of the pred itself from the body within a few hours but the antiinflammatory effect lasts for 12-36 hours, depending on the person. If you are someone for whom it only lasts towards to 12 hour end or the range, by the afternoon you will find the inflammation starting to have an effect again. In that case, you may benefit from splitting your pred dose - about 2/3 in the morning and the rest later in the day, about an hour or two before your symptoms start to reappear.
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.
I agree with Eileen. I find I am functioning better because I pace myself and can do more by taking rests between tasks. I have friends coming to lunch on Thursday and I started to prepare yesterday by doing some housework, a bit more today and tomorrow I'll set the table and start the food preparation. I was out last night and again this afternoon and tomorrow morning. Unfortunately, by accident and not design, this is turning in to a busy week so I am hoping I'll last the pace. The main thing to remember is pace. I have stopped putting on my alarm unless I have to be somewhere. I don't know why I didn't think of this before as I am retired. I removed the digital alarm a long time ago so that I would not be tempted to look at the time if I am awake.I find I am sleeping better and I drink no caffeine which, although for a different reason,has also helped my sleep. I hope you find a resolution as Eileen's advice is sound.
That happens to me. As the day goes on, the pain and stiffness get worse. I am never really pain free but it is manageable midday.
Then you almost certainly need a slightly higher dose and/or to rearrange how you take it.
I take my prednisone in the morning. Do you think splitting the dose would be better?
I pace myslef this way, too, Silver49. But I set the alarm and get up early to eat, take pred, do exercises and generally have a quiet time. It's my favourite time of day, especially when the days are longer and it is nice then to get out for an early morning walk. Winter not so much.
Wow I am the opposite. I get better as the day goes on. Hurts to walk but after walking awhile it gets better. But woe betide me if I stop. And the next day... OW!
How much are you on? You HAVE to take enough to really manage the inflammation so that is where you start. You won't necessarily be totally free from pain, few people are, especially in the early days. But whatever dose you are on should achieve the same level of relief as you initial starting dose, whatever it was. If it doesn't, you have reduced too far.
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!
I am currently taking 15mg. My doctor tried to reduce me from 15/10/7.5. At 7.5 all the pain came back. He told me to increase to 10mg but that still wasn't cutting it. I am back up to 15mg and also now started on Metholtrxate. I go see my rheumologist on the 22nd, so we'll see. Thanks so much for your comments.
Excuse me while I bash my head against the wall!
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.
Thank you so much for your helpful information. I am from the US and my rheumologist has prescribed the methotrexate telling me that it may be able to use less prednisone. He is concerned about the long term effects of prednisone useage. It is so hard to know what best to do! I appreciate your comments!
Just chipping in my two cents worth here - how long have you been on pred so far? My gut feeling is if you are allowed to stay at a suitable dose of pred to get your inflammation under control you may well be able to reduce to a fairly low level by using the dead slow method, and then why would you ever need methotrexate? I don't know much about mtx but the experts here do, and they'll give better more informed advice.
rrobinson75, fyi I started at 15 about 7 months ago. Currently at 7 mg, tentatively trying for 6.5 but not sure it is going to work just yet. I'm pretty happy to be down to 7 mg so soon and don't want to push it. My doctor did say something to me about getting off pred asap because of unwanted effects (namely bone thinning) but I've kind of ignored her as obviously I'm going to get myself off as soon as I safely can and in the meantime doing everything to keep myself as healthy as possible without adding more drugs.
I started on Prednisone 15mg in September '15. By November I was down to 7.5 mg but started hurting. I am now back up to 15mg and have an appt next week.
You MAY be able to manage with a lower dose of pred - but there is no real evidence it works. There have been studies, the results wer for one, against one, don't know one. And they were small studies. The theory is that the mtx changes the way your body processes the pred and potentiates the effect.
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.
SPLIT THE DOSE?
I've had PMR for nearly 3 weeks so a beginner!
I started on Pred on 24 Dec 2015 and took 30 mg per day at 08:00 every day for a week. When I woke in thee morning I was in pain till 14:00. I spoke to my doctor and he agreed I should split the dose. I changed to 15mg at 08:00 and 15mg 12 hours later at 20:00. Next day I was pain free. 2 days later I dropped to 10mg twice per day and still pain free.This is not typical behaviour for PMR, or the way Pred is normally taken, but this works for me. So splitting made me pain free and allowed me to reduce the dosage. Will try reducing more in a couple of weeks time.
Good luck,
Andy
"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.
It took you two months to reduce the same amount that took me over six months - and I've been pretty fast. No wonder you are hurting. Hope you get back on an even keel soon, and whatever the doctor says, mtx or not, don't rush it!