Symptoms worse as day goes on

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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 . 

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  • Posted

    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.
  • Posted

    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.

    • Posted

      hi Eileen, the wearing off of the pred is one I didn't think about , even after I have taken them after about 3 hours I'm in a lot of pain with hips and shoulders . Dr just to,d me to take pain killer which I have but that don't take the stiffness away and only half the pain .  Clearly I need to take yo my dr frankly . Thank you very much for your advice . 
    • Posted

      How long had you been on 15mg? You have to get all the symptoms under control before you start to reduce. You may not be fully pain-free but it should be better than that. Pain-killers don't help significantly in PMR and just add in another set of side-effects. What did he tell you to take? You shouldnt be taking NSAIDs (ibuprofen for example) alongside pred, cocodamol has its own unpleasant side effects and paracetamol is useless for most purposes.

      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.

    • Posted

      very good advice EileenH... I found that short nap in the late afternoon helps me a lot. After nap I am fine untill 1-2 AM, which is when I am done with work. 

      I also split my dose in 2 parts 2/3 in the morning and 1/3 after dinner.

  • Posted

    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.
    • Posted

      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. wink
    • Posted

      That's what I do I have to pace myself else I just flag out . I also think that it is sensible to omit caffeine . Yes the advice from Eileen is good advice and not one that Id thought about m thank you 
  • Posted

    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.
    • Posted

      Then you almost certainly need a slightly higher dose and/or to rearrange how you take it. 
    • Posted

      I take my prednisone in the morning. Do you think splitting the dose would be better?
    • Posted

      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!

       

    • Posted

      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.
    • Posted

      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.

       

    • Posted

      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!
    • Posted

      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.
    • Posted

      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.
    • Posted

      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.
    • Posted

      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.

    • Posted

      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!
    • Posted

      Dr told me that pred works with the adrenal glad and that should only be took in the mornings .  
    • Posted

      Veronica, the idea is that normally the adrenal gland will release its hormones first thing in the morning.  Pred shuts down the adrenal gland, so we are encouraged to take our pred at that time to imitate the natural release of cortisol (I think it's cortisol).  But so many people find relief from spitting their dose it seems like a good option for some who are on long term steroids.  Not a good idea to split if you are on a short course for another condition, but we are on it for the long haul.
    • Posted

      Pred does NOT work WITH the adrenal gland and that is NOT why it is recommended it should be taken in the morning.

      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.

    • Posted

      This is interesting information. I am usually up very late, 1-2AM, but had no clue that would be the best time to take pills... I only sleep 5-6 hours though and mornings are not too bad for me... I do take afternoon naps 30-90 min... and that helps me a lot to survive long day....

      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.

    • Posted

      If you are still up at 2am-ish, then if you take your pred dose immediately before going to bed it will reach its max in the blood at about 4am. The substances that cause the inflammation in PMR are shed in the body about 4.30am. The police are ready and waiting wink

      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.

    • Posted

      Make sense, but at this point I am reluctant to change anything, because this week I increased excercise load  and my doctor reduced pred from 15 to 12.5.  I will wait a week or two before changing another factor, because if something goes wrong, I would not be able to isolate the cause of the problem.
    • Posted

      That is not entirely sensible - to increase what you are doing while reducing the dose that was holding the symptoms (I assume). We have advised for years now to choose a week where you haven't got too many committments that you can't put on hold if you DO suffer steroid withdrawal problems. Most people have enough problems with their body adusting to a smaller dose - so we suggest not more than 10% drops (that has been recommended by top medical experts for a long time) and keep the work load at least steady if not less for a few days. You've done nearly 17%.

      All I can say is good luck.

    • Posted

      I know in retrospective it does not look sensible... but I have already done my "harder" workout ( biking) before dose reduction -while on 15mg... Swimming is for me always relaxing, and that was  the second workout of the week, Never the less, on that day I took my old dose (15mg) just to be safe, and next day went back to new regiment 12.5mg.  So far no issues.. knock on wood...
    • Posted

      I wanted to get back to you dose splitting and timing. I took your suggestion to take 1/2 dose before going to bed ( 1-2AM) and second as soon as I wake up ( ~8AM).  First it removed any residual symptoms from last reduction ( 15mg-->12.5). Not only that. I think split dose and proper timing does enable faster reduction in medication since it is utilized more effectively.  Based on the blood tests which were normal last time (2 weeks ago) and today ( Jan 27th) rheumatologist reduced the dose to 10mg and decided that he needs to see me only once/month.
    • Posted

      It depends on the person - the splitting helps the person for whom the antiinflammatory effect of pred doesn't last the full 24 hours. Beware of your rheumy continuing to reduce your dose in that size steps. As long as you are taking enough or more than enough pred to manage the inflammation your blood tests will be "normal" - but PMR is a long-lasting disorder and the lower your dose gets the nearer you are to the lowest dose required to achieve the same acceptable effect. Below 10mg 1mg at a time is more than enough - no reduction should be above 10% of the current dose it was advised years ago. We think less is even better below 10mg. 
    • Posted

      yes, we talked about it during the appointment today... next steps will be 10% ( 1mg) or less... He is thinking that critical zone is 4-7mg when internal gland needs to kick in and help...
    • Posted

      Yes - but that is the return of adrenal function - it is nothing to do with the PMR. Above a daily dose of about 7mg the body doesn't produce any cortisol, the natural corticosteroid. As you reduce the dose it has to start up again. You may find the dose YOU need is above or below that - and your adrenal function may be fine but the dose simply not enough to manage the inflammation if the autoimmune disorder that causes it is still active.

      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.

    • Posted

      yes I did short version DSNS when I went from 15-->12.5.  I think I will try this time 12 day transition ( starting at 1new/3 day old, etc). 

      See I read all the stuff you send my way cool

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