What should I eat with my prednisone?

I use and like Coconut milk, and it agrees with me well.  There is also a creamer for coffee.....

It is very popular here in the US.

Erika

The long time recommended time to take pred in PMR is as early as possible in the morning in a single dose. This is believed to have less effect on the adrenal glands. A study has shown that the optimal time to take ordinary white non-coated pred in order to minimise morning pain and stiffness is at 2am - a few people have tried it and found it worked well for them. Many people wake to go to the bathroom during the night - and some thought why not try taking the tablets then. The idea of this is because the substances that cause the inflammation are shed in the body about 4.30am. Taking the tablets at 2am leads to the maximum level of pred in the blood being at about 4am - ready and waiting to attack.

The antiinflammatory effect of pred lasts for between 12 and 36 hours. Some people for whom it only lasts for 12 hours find that taking part of their dose in the evening allows them a better evening and night rather than waking with pain and stiffness in the middle of the night. 

The inflammation is caused by an ongoing autoimmune disorder - as long as it is active inflammation will develop in the early morning as the substances that cause the damage are shed into the body. Eventually the autoimmune disorder burns out - and no more inflammation is created and you won't need pred.

However - the dose you start on is one that is enough for the majority of patients to get relief but no so high that it masks other things. Only PMR responds well to this dose, 15mg of pred, other things will respond to higher doses of pred.  In some ways you could remain on 15mg for the whole time - but there is always concern about the side effects of pred and it is felt that they are lessened by a lower dose. So you start to reduce gradually to find the lowest dose that will manage the symptoms acceptably. Yes, 15mg will do the job, but it is possible that 7mg will do the job equally well but with far less pred there to cause trouble. Everyone is different - you might need 14mg to control your pain and stiffness. Currently I need 4mg to do that - I tried 3mg but I had some arm pain so I went back. You may try reducing this month and it fails - but a couple of months down the line it WILL work and you get to a new lower dose, which is why you need to keep trying to make a small reduction to see if it works. Others may start at 15mg and decrease steadily to 5mg or even further with never a problem at all. Then they get to a dose where they try several time sin a row and everytime they have pain again - that's a sign to mark time at this dose for a while before trying again.

And yes, many of us who are still on pred have good days and function near enough normally. But we are all different and there are some people who still have a lot of pain and don't feel anything like 100%. In some cases it is the PMR having a greater effect, in others they have other, not recognised problems maybe. It makes a great difference .

The fatigue is probably due to the underlying autoimmune disorder - and unfortunately pred has little or no effect on that. That must be managed by resting and pacing yourself. Google and read The Soons theory by Christine Miseriando - it is an excellent parable about husbanding our resources.

One day things wil improve again - you have to be patient I'm afraid. Many of us have found that learning to accept this is where we are and to adjust how we do things often results in an improvement in how we feel. If you insist "but I've always done it this way..." and refuse to look for alternatives then you are wasting a lot of energy on fighting that would be better devoted to other things. Learn to prioritise - what is most important? 

It is a chronic illness and it is unlikely to go away soon - learn to live with it and adapt and things will be a lot brighter than if you constantly look at what you can't do and mourn it on a permanent basis.

Eileen mentioned that "the nasties" start acting out at night, and to prevent to feel pain in the morning, prednisone will take care of this in advance because it takes about 3 hours for the body to assimilate the medication.

 The inflammation is always there......especially for us who were diagnosed recently with this dreadful disease!

When I have a flare up, I prefer to take the full dose of 20 mg in the morning for about 3-4 days and I am painfree.  After that for maintenance I split the dose and use the 10 % reduction of 2 1/2 for a month.

It's tough.....but doable.  Good luck Padada.

Erika

 

Hello padada, I can make any comment on the split dose because I've never taken my pred like that but I do appreciate that others do.

you say that you are new to this wonderful condition. How long since you were diagnosed and began medication? I was on 15mgs for 6 weeks, 12.5 for 6 weeks then on 10mgs for 6 months before reducing to 9mgs. 

I experienced a massive benefit from preds within 4 hours, I simplt couldn't believe it. However it was many weeks, maybe 4-6 before I really felt that most of my remaining niggleing pains were gone. However, saying that, if I do too much, eg, carry too heavy shopping bags, do too much cleaning all in 1 go, which is difficult for me not to because I run a holiday cottage business, then I do suffer terribly from excruciating pains mostly in my right shoulder and right shoulder blades. But after a couple of days I feel a whole lot better. 

On the whole I feel pretty much as I did prior to PMR only but I can exercise as well as I used to, for eg, I actually find it very hard to run? And I'm sure I must look ridiculous as I attempt to run. Also I attempted a game of tennis last Friday, the first game since first experiencing PMR symptoms. I could not serve, as it was too painful. I had very low shot strength, and my all round game was very poor. 1 week on and I am suffering from pain in my right shoulder ball and socket. Now the fact that I appear to suffer from so much pain in my right shoulder, ball and socket, upper arm and shoulder blade tells me that I probably have a injury issue there and so will attempt to reduce all severe work load for that area. 

Yes I still suffer from fatigue but not often although I did for many weeks after diagnosis and medication.

i do believe the longer you're in to the treatment and reduction of medication I feel things will find their own place again even if it is a little less than we want or expect. All the best, christina 

Hi Prada

i think the others have answered a lot of your questions. I take my Pred all in one dose when I wake up because it was suggested on this forum and I find that by the time I get up in the morning my aches are less than when I used to take my Pred with breakfast. I haven't tried setting the alarm at 2:00 because I don't sleep well anyway so I just take it when I first wake up during the night. 

Like you, I also have a little muscle ache all the time but it doesn't interfere too much with my day.....but I am aware of the shoulder and neck ache so I don't do things that would overwork those muscles. For example I go to yoga but there are a couple positions I don't do. My main complaint is the constant fatigue.  What I find helps with this is to go for a walk. I pretty much always have more energy afterwards so if I want to feel better most of the day, I need to go for a walk early in the day.   Some days that is easier said than done!  I do not have my old "normal" life and have had to cut back on things and not do others but I keep reminding myself that some day this PMR should go away. 

I have had PMR for almost 2 1/2 years and wish it would go into remission soon....but as you know we have no control over this so we need to listen to our body and pace ourselves.  I got PMR just after I retired so all our lovely retirement plans went out the window.....though I am hopeful we will be able to do them in the future. 

This forum is a wonderful source of information and it's invaluable for linking in with others who are also on PMR journeys. 

Hello mrs cj, could I ask, you say you've had PMR for 2.5 years now, did you start on 15 mgs for 6 weeks, 12.5 mgs for 6 weeks, then 10 mgs for his long and what dose are you on now. Also have you ever had any flares. I'm being nosey but I hope you don't mind me asking just as a matter of interest. Thanks christina 

Christina ,  thank you for your reply. Many blood tests were done to rule out other diagnoses, so I was given PMR based on my symptoms only.  They are pretty much classic.  I started on 15 mg prednisone at the beginning of January.  At 4 weeks the pain was reduced greatly to just some lingering achiness in both shoulders.  That is where I made a mistake and reduced to 12.5 (albeit my rheumy told me to go down to 12.5 mg and of course I wanted to be on less even tho I knew the UK protocol of 6 weeks on 15 mg.)  All the pain came back within a week, and I went back to 15 mg.  I have been on 15 mg now the second time 5 weeks and the pain is reduced in hips and back and the 'niggling' pain is pretty much gone, but still achey in shoulders . 

 

I never had the miracle pain reduction that you and others have described and wonder if that is necessary to make sure one is on the correct dose? 

I don't think I will go directly to 12.5 again.  I will taper with the 10% advice I have already been told about.  I don't know if I should even start to taper until all my pain is gone?  Should everyone taper after 6 weeks on 15 mg.?  Thank you for your input it helps me sort out the many things I have read already.

You have nicely explained your pain levels, how they reduced and how overworking still activates pain. Also thank you for explaining the time frame for your fatigue factor.  It gives me a realistic goal for taking prednisone and how long it takes to reduce pain and fatigue.  I thought I was not responding to the prednisone adequately, but it seems I probably am.  Thank you for sharing. 

 

Erika,  You say you are pain free on 20 mg - is that totally pain free or with some Niggles as Christina calls them. Also, do you still have the fatigue on 20 mg?  What dose are you on now and are you pain free?  Thank you.   

No, I wished I would be totally pain free --- my lower back (girdle pain) is hurting today,  and I have terrible fatigue at times.  Without a 20 minute nap even around 10 a.m. and then again in the afternoon....sometime after lunch..... I can hardly make it through the day. 

Thank you for all that good information.  I take away, in particular, that even though the UK protocol that I have read says 15 mg for 6 weeks, one may need 15 mg longer and that may be normal for that person. 

I understand your explanation of why we try to taper and of course I want to be at a lower dose of prednisone due to the side effects it is causing me, but allowing the pain back is just not acceptable.  

It seems that PMR is rather mysterious and that there is not one answer for everyone.  I am still trying to figure out what the goal is for my body.  

The area I am having a lot of trouble understanding is the quesiton of pain reduction.  I am not clear as to whether ALL my pain should be gone as this treatment continues, or that most of it should be gone.  I read of both instances here on the forum.  What should my goal be?  My pain is significantly reduced but not totally gone.

I am grateful that I can come here to the ladies on the forum and learn what has worked for all of you and then hopefully know I am on the right path or that I need to make adjustments.  There is nothing like communicating with a fellow PMR sojourner to clear questions up.  

To me right now, getting rid of the constant achiness (no longer have the sharp, shooting pain) is my primary goal.  I have accepted to a certain degree, my limitations in activity. Mostly, as I said,  I am disappointed that i have not achieved more pain relief at this point, but it seems that I am not necessarily alone on that issue either.  So I have to be patient just like everyone else.  Eileen your infromation is much appreciated. 

I rememeber Eileen mentioning that there is usually only a 70 % pain reduction when taken Prednisone  --- I assume with any amount.  This pain is always there, and as long as it is tolerable and one can enjoy life without constantly being reminded by pain, then one needs to accept PMR to some extent although we all hate it! 

I still cannot believe at times that I have to live with this LIFE LIMITING disease.  l never thought I would be hit with something so painful when a flare occurs.

These are my thoughts, Padada.  This forum is a true comfort of expression when we all need to air our worries and questions we have.

All the best to you.  Erika

Thank you for sharing Mrs. CJ,  I want you and everone who has replied to my questions to know how much I appreciate your time and effort to respond to me and all other inquiries.  I would hope that one day when I feel I have some encouraging news to share, that I will also be responding to quesitons and not just asking them. 

I really need to know what you have shared.  I am trying to guage the effectiveness of the dose of pred. I am on, and because you have shared ith me, I can put things into better perspective.  You still have the shoulder and neck area ache. That is where my pain first started months ago but then it went away, only to have me wake up one day with pain in not only my neck and shoulders, but also my back and hips. 

I will have to try to walk more.  I am not motivated to do so, but if it will give me a little more energy, I should try to do some.  I am still not going out much so I think that you must be a lot better than when you developed PMR 2.5 years ago since you are going to yoga class. I could not even begin to think about a yoga class.  Your progress is encouraging in that area and I am happy to hear it. 

 

 Yes, I remember Eileen mentioning that a 70% pain reduction with prednisone is good indication when treating PMR.  However some here have said they are pain free.  Perhaps I am misunderstanding what they mean by 'pain free'.  I take it from your reply that you still have some pain but it is tolerable. 

Those who are gotten off of  prednisone must be off of it because the inflammation is gone (has burnt out).  They must be PMR pain free. 

This forum is a comfort and to be able to ask questions and get informed answers is a blessing. This treatment for PMR is not cut and dry and I have not even reached the first six week treatment goal. Thank you for sharing some of your experience.

Hi Padada

my pain started at the base of my neck and then spread to my shoulders, then eventually to my hip area. the Pred quite quickly got rid of the aches in my hips area but my neck and shoulders always have a little ache and if I overdo, the aches there are worse. 

I feel like it would be bad for me personally to not keep moving so I have always tried to walk. In the beginning it was just around the block. And the yoga I did then was a restorative class so lots of gentle movements. As my Pred has reduced I've been able to be more active and now I can walk for several hours, take a moderate yoga class and even get in some golfing if I carefully pace myself. 

If I have a day that is a bit more achy I warm up my Magic Bag in the micro and drape it over my shoulder. I've read on this forum that others say a heating pad or warm shower helps them. 

I don't mind sharing my story. My problem is that I have a Dr who knows very little about PMR. He started me on 20 mgs of Pred and told me I had to get off it as soon as possible. He said I would only be on it a few months. Every time I went back to see him for my prescription renewal he repeated that I needed to get off it. So I accepted more pain than I should and got off it in less than 11 months. Well of course I had a flare 3 weeks later.

That is when I discovered this forum.  Eileen and Mrs O helped me get restarted on an appropriate dose of 10 mgs and I came down easily to 4 1/2.  I have been at this level over 9 months and have not been able to reduce to 4 - yet. 

i would like to help educate my Dr but he is not receptive to anything I have to say, so basically he renews my prescription - and gives me a CRP blood test if I ask for one - and I depend on this great forum for information.  

Sorry Padada - I'm not sure how much more clearly I can say that everyone is different. There should be a big improvement in pain very quickly but not by any means 100%, if you have bursitis then it will take much longer to go. Some people are never pain-free - your constant achiness may come under that heading, there is no way any of us can say.

I am not you, MrsO is not you, Christina and Constance are not you - every single one of us has had a different journey with PMR. Some of us had more disability to deal with than others - what we seek to do is give you some pointers on your journey, provide ideas for you to try to manage your problems better without you having to look for them, have the inspiration or suspicion.

On other forums there are ladies who have been on pred for many years, are significantly handicapped and with a fair bit of pain but still carry on, accommodating it. If you keep obsessing about how much pain you are in and that it has not gone yet you will feel worse than if you accept that this is the way it is and look for ways of adapting to it. PMR may be a pain in the rear, but it doesn't kill or even make you seriously ill - and it often goes away after a few years. As Erika says, it is life LIMITING, it is not life THREATENING.

The only person who can make it any better is you - and if you are unable to do it for fear and mental paralysis  then you need to seek counselling in living with chronic pain and illness or possibly ask your PCP for antidepressant medication to help you over the hill. You say you have accepted the limitations in activity - the pains you have may be from other things beside PMR. Myofascial pain syndrome and bursitis both accompany PMR and both will cause shooting pains - see a physiotherapist for advice there and then, if that is the case, they can be targeted separately to achieve a better result.

There is a blog called Rebuilding Wellness which is aimed at living with chronic illness. Another called The Seated View is about a young woman who has had RA since childhood also not only tells a story but offers realistic comment on living with a chronic condition - Lene's difference is that hers will continue to get worse, we have hope of remission. But they are both useful.

Hello padada, yes I had many blood tests done also and I know that RA was ruled out and I assume other medical conditions also? But I did have raised ESR/CRP levels so I also assume that they helped with the diagnosis. Also as I said within 4 hours of my first dose of preds there was a marked improvement and also for me whilst I've been on preds all my blood test results have either been very good and so indicate that the preds are doing there job or on a couple of occasions when they have come back raised, the nurse from the practice has contacted me to request another blood test and when asked if I've been well over the last couple of weeks when I've explained that I've had a couple of cold sores that won't go away or she'll say "you sound a bit stuffy" and I explain that I've got a cold, she always replies that that's the reason my bloods were slightly raised.

i am very lucky in that both my new Dr and my rheumatologist have followed pretty much to the letter the Bristol PMR plan and so all the time I was on each dose the dose had plenty of time to do its work. I did have a flare or rather 2 flares because like you I was pushing myself to lower my dose quicker. I had had a almost brilliant journey of preds reduction and at 9 mgs I reduced straight down to 8mgs. Of course now I know I should have used the slow, slow reduction regime but I thought I'd be fine. Well I reduced at the same time I had a cold sore, big mistake, I had a flare, but upped my preds back up to 9mgs within 2 weeks of reducing them. I then had a rheumatologist appointment and asked him because of the flare if I could adopt the slow reduction method, he agreed, so stupidly I went home and the next day began my slow reduction, 9mgs one day, followed by 8mgs the next. But again I had another flare. This second flare was entirely my own fault as I had only been on my upped preds for 2 weeks to get over my first flare, before I attempted another reduction, far too quickly I think. So I upped my medication back up to 10 mgs so that the preds could really get to grips with the flare and really do their work, which they did. I stayed on this dose for 6 weeks.i reduced to 9.5 4 weeks ago and I am fine so on Monday I may try 9.5 one day followed by 9 the next and see how I go on.

in your case I would be inclined to stay on 15mgs abit longer. As you say this time round the pain relief has not been as good as the first time round and so I think this dose of preds has a bit more work to do. Well, that's how I see it. Then I agree completely, instead of the reduction to 12.5 reduce by 1mg at a time and stay on each of those doses for 4-6 weeks, yes reduction of preds will obviously take longer but I think it may save you another flare, and what I hate about flares it that you have to almost go  back to the starting line again.

what I would do in your case is think back through your life and recount all the pains and niggles you've ever encountered. For example I was a huge sports person and dancer. And infact my early dancing career had to be abandoned because of constant injuries. So I remember that I suffered terrible right hip, groin, wrist, knee, shoulder, neck and even a problem with my right foot. Now I am 50 plus all my past injuries began appearing again. So when I'm on each dose if a pain or niggle won't go away I mentally check that it is not the PMR pain but pain appearing from an old injury. Also the PMR pain was very distinctive, and so if I experience pain that does not resemble PMR pain I do not worry myself.

try if possible to stay on this dose abit longer, then reduce by 1mgs until you get to 10mgs then reduce by a half each time. Check when you're due for another blood test and hopefully the results of them will help indicate if there is still abit of inflamation that needs controlling before a further reduction.

all the best, christina 

 

padada, just to add abit more info. Like Mrs cj the pain first appeared in my neck, then Shoulders, then hips, etc. but like her I also try and keep myself mobile. I am only 54 and all my life have experienced very good health, in fact I hadn't visited a Dr for nearly 7 years when all this PMR rubbish appeared. But what I'm trying to say is, as a younger person I do not yet have any elderly illnesses along with this PMR. And I think that some of the forum members who have a bad time of things, possibly have a bad time of things because their bodies are having to cope with multiple medical conditions where as mine isn't. Sorry everyone I didn't want to sound rude but didn't know how else to say it. Also I know it is difficult but please try to do some exercise, and that could simply be walking, in my opinion one of the best forms of exercise, because it helps not just to keep our bodies healthy but it gets the blood pumping around all the areas were we experienced inflamation but it is also good for the bones and helps stave off osteoporosis  and as you know that is one of the side effects of the preds. Regards, christina 

thanks mrs cj for that info. Drs, as I said in an earlier link, they control our drugs we do what thay say and when they get it wrong either because they don't care or they don't know it's us who suffer. I'm very pleased that your recovery journey is now back on track and I don't think 4.5 is  a bad dose to be on and I believe that you will be suffering fewer side effects at that level of dosage so it's win win all the way. If you see what I mean. Good luck, christina