Has anyone got any thoughts on what time of day to take preds. I currently take mine in the am after breakfast, and have found that it takes several hours before the stiffness of my limbs Wears off. Does any one take their preds in the am and the rest before they go to bed? I wonder if this would help reduce the stiffness in the am.
i take mine tween 7 and 8 am but i can honestly say i didnt have much pain in the morning. even wheni was the higher dosage
The recommended time to take your pred is as early in the morning as possible and in a single dose - that reduces any side-effects as far as it is possible. Many people take it at about 6am, remaining in bed for another couple of hours to rest and by which time the pred is taking its effect. The absolute optimal time to take ordinary white pred to avoid morning stiffness is 2am- it achieves its peak level in the blood before the cytokines, the substances that cause the inflammation, are shed in the body at about 4.30am.
Some people find that taking 2/3 in the morning and then the rest in the mid to late evening achieves a better result. There is no single answer - we are all different and a bit of experimentation is OK. But be careful what you tell your doctor - some will have hissy fits at the idea of not aking it at 8-9am!
If you are taking enteric coated pred it takes about 6 hours to achieve the peak in the body - taking it before bed is a good alternative.
I take my prednisone at 2 a.m. with a light snack -- I happen to wake up around this time. This reduces the pain and stiffness I would have otherwise in the morning. I get up bright and early at 6 a.m. to get ready and take my granddaughter to school.
I have to be able to m o v e . It works well, and I can take the rest of my supplements (calcium, magnesium and Vit. D) with breakfast.
I started out spreading my 60 mgs out at mealtime. Then my expert rheumy had me change to all at once in the a. m. on a full stomach. What a difference for me...by mid morning I could sorta function rather than being tired all day. I am now listening to my rheumy rather than the GP or general biopsy surgeon.
Hi,
It is true, we are so different, and like Eileen says, we need to experiment a little to see what program works best for us.
I was having trouble sleeping so started taking mine at bed time between 11:00 and 12:00 and it helped. I take the white tablets and am alternating between 10mg and 9mg at the moment.
I don't have a problem with pred affecting my stomach so don't have to snack before bedtime either.
I also don't have morning stiffness, at least any more than would be expected at my age (65), and what I do have is gone within a few minutes of getting moving.
Hopefully you will find what works for you soon.
Diana🌸
Hi could u tell me if your white tabs are 1mg and are they enterict coated only i would have thought you would be on the red enterict coated 5mg ones
Hi again think i may have botched up my reply about white pred so if you did not recieve my message please let me know
Hello Tisser
I have been taking my Pred after breakfast as advised by rheumy since 2011. I found it was late afternoon before I felt ant benefit.
Then I joined this forum a few weeks ago and decided to follow Eileen's advice to try taking it at a regular time in the night.
I generally wake around 3.30-4.00 am and have bben taking my Omeprazole first, the approx 30mins latertake my 60mg (now 50mg) Pres around 4.30am. I gthen sleep for another 2/3 hoursand find I can get out of bed more easily and am more alert. The rest of the day is also much easier.
Hi Jean, Both my 5mg and 1mg are the plain white tabs and I haven't had any problem with them. Maybe that's why my Rhuemy hasn't suggested the enteric coated ones. I'll ask him next visit in May.
hugs, Diana🌸
Hi Tisser,
Great question! I've been dealing with the same issues and lately I have been splitting up my 9m I take each day. If I wake up about 2 am or so I'll take maybe 4 mg and then the other 5 mg around 7 or 8 am. By doing this I find I'm not as stiff at 7 am when I wake up, all I have to do is remember to disturb my sleep and take 4 mg or so during the early morning hours. It helps reduce the degree of stififness and the time it lasts in the morning when I do this. I figure the prednisone isn't effective during the night hours, as it doesn't work for 24 hours at at time, and I need to take more of it, so the earlier the better. Try it and let me know how it goes. I've only recently trying to implement this strategy.
I guess I'm confused.... Now that I'm on Pred I don't have pain or stiffness. I do feel it wearing off but only return is the sensitivity in my teeth and some discomfort in my left shoulder.
I take 4mg at around 5 am and 2 mg at 5 pm. My biggest challenge is the fatique which I feel Pred does not help with at all.
Lately I'm wondering if I really have PMR. ? The Rheum that I had first seen dismissed my fatique and my symptoms ( I had pain in hips, shoulders, neck and stiffness especially in the mornings) because my blood work did not confirm Dx however he called today and apologized ( I had sent him the article on fatigue). I refused to return to him and decided to stay with my Primary. The fatigue is so inconsistent and now it appears to be in my left arm and occ. in left leg!! Weird! I think.
Just some thoughts.....
I found that when I took the pred at 2am, I was ok in the morning but by bedtime the effects were wearing off and I didn't sleep well. Now taking it at about 6am. Stiff for about 3 hours, but good for the day and night.
Enteric coated are only available as 5mg and 2.5mg - the 1mg size would not be cost effective we are told. Lodotra, another form of coated pred but for a different reason, comes in 5, 2 and 1mg tablets - they all cost exactly the same whether you have 5mg or 1mg tablets.
The fatigue is due to the underlying autoimmune cause of the symptoms we call PMR - and pred has no effect on it at all. That is still rumbling away in the background while the pred manages the symptoms that cause the pain and stiffness to allow a better quality of life.
I have half my dose with breakfast, the other half with eveing meal, it has eased (not got rid of) my blurred vision/balance problems quite a lot to be tolerable....my rheumy dosen`t agree, but hey, I`m the one that`s house bound if not!!
With all due respect; how do you know this and doctors don't? Have you researched( besides the article from John) about this? If inflamation is under control by Predn then what else is going on ?? What a wonder this body of ours !!!
Some doctors do - and write about it. GPs and many rheumatologists don't keep up with the latest research and in fairness it would take so much time they wouldn't have any time for patients so would defeat much of the object. Most doctors remember what they were taught at a particular point of their medical education and if something new happens they don't always know about - in PMR and GCA it is a case of just being one fairly uncommon part of rheumatology. GCA is classified as an orphan disease - a rare one. Many GPs have never come across it in real life, maybe they read a sentence or two in a text book. They have to know about a lot of things. PMR is the most common inflammatory rheumatism in over 60s - that doesn't mean it doesn't happen in younger patients but until relatively recently the symptoms were merely seen as a normal part of aging that you had to live with. For many the symptoms are livable with, the incidence is probably underestimated because the patient doesn't go to the doctor in the first place.
For the last 6 years I have read every article and textbook and research paper about PMR and GCA I can lay my hands on. I am also a patient representative with one of the UK research groups. I have a physiology degree and have worked in medical fields all my working life, routine labs, research work, translating reports during clinical trials of medical devices and new drugs so I can read most papers and understand them as well as your GP could.
Autoimmune disease is autoimmune disease - and many factors are common to all. One is that very few have cures - mainly because the causes aren't known. In autoimmune disease the immune system of the body goes wrong for some reason and no longer recognises your body's tissues as "self" so attacks it for no apparent reason, damaging tissues.
It is beginning to be thought that it is neutrophils that are involved in PMR and GCA. They are one of the white blood cells, an integral part of the immune system, and in the last year or so were found by researchers in raised numbers in patients with GCA and other large vessel vasculitis, even after 6 months of treatment with pred at above 20mg/day. This piece of information may be the clue to a better test for monitoring how well the treatment is working - but it isn't as simple as just measuring how many there are in the blood, it needs a special test to do it.
To make it clearer, Askdotcom says:
"Neutrophils congregate at the site of an injury or infection. They surround bacteria and consume them using lysosomes, which are structures within the cell that contain digestive enzymes. Neutrophils, along with eosinophils and basophils, are known as granulocytes because these cells contain a substance that looks like granules. These granules are actually the lysosomes.
Newly made neutrophils have a single, round nucleus. As they age, neutrophil nuclei break apart. A doctor can tell if the body is responding to an infection by observing whether or not the nuclei of the neutrophils are intact.
Neutrophils generally travel around the body in the bloodstream. About 3,000 to 6,000 neutrophils are normally present in each milliliter of blood. When an injury or infection occurs, blood starts accumulating around the site of the wound. Chemotactic factors are substances located on injured tissue and on foreign invaders such as bacteria. These factors attract neutrophils to the site of an injury or infection. Neutrophils stick to the inner cell layer of blood vessels at the site of injury. These leukocytes then squeeze through the cell layers of the blood vessels into the area between cells, known as the interstitial space, where they encounter the foreign substances and destroy them."
This last bit may be the clue to GCA (and PMR) - and a medical student from Leeds is spending his intercalary year in Barcelona with one of the big research groups looking at the capillary supply to the temporal artery as a model for vasculitis, GCA in particular. He is being funded by the NE of England PMRGCAUK support group and has written about it in the winter issue which you can read online at their website.
This is also possibly the link with the pred effect - it is thought that pred acts on neutrophils in some way to achieve its antiinflammatory effect. So pred works on the inflammation and reduces the symptoms it gives rise to. But it may or may not actually have an effect on the CAUSE of the neutrophils setting up a battle field - and it is that cause, the autoimmune component that probably causes the fatigue at least and maybe other symptoms too. So pred helps you feel better - but there are other bits bubbling away beneath the surface so you may still not feel 100% back to normal.
Much of this stuff has only been found in the last few years - the techniques of all sorts weren't available any earlier and when you develop a new test it must be validated against the existing knowns or shown to be right in some other way - otherwise you could say anything about it.
Eight years ago there was only this forum to get patients together - now there are 3 forums in the UK, support websites and helplines. Patients - like me but there are quite a few of us - are actively involved in research and putting our side of the clinical picture. We tell them about what you all tell us about symptoms, clinical experiences, patient journey. We advise on questionnaires, research needs and so on - and this is international, not just the UK or just the USA. It is exciting and we are getting there - but Rome wasn't built in a day.
Hi Eileen, a friend mentioned to me the drug Allopurinol which helped someone he knew with their PMR symptoms. Are you familiar with it and aware of its use? I also would like to ask your thoughts, (as so many others do here), on an ongoing issue the last 3 weeks with a dull ache in the teeth in my lower right jaw. I saw my dentist last week who felt a build up of plaque was the cause so my teeth were cleaned, not to mention 2 small cavities along the gum line there needed fixing, unfortunately the discomfort has continued however. I've read here that salivary flow can be slower either from aging or from prednisone so this can contribute to problems. I'm wondering if its the prednisone that is causing my ongoing problem, or as I've also read here, possibly my bite has been affected by the stiffness in the neck and shoulder areas. Might you have any suggestions as a procedure to eliminate and possibly resolve my problem? I have also found in the last 3 weeks that by splitting up my daily 9 mg of prednisone and taking part of it in the early morning hours between 1 and 3 am and the rest upon waking around 7 or 8am that my morning stiffness has been dramatically reduced! Those paritcipants online here who gave this last suggestion have been a great help to me here in this particular instance! Thanks.
It's certainly not a usual use for allopurinol which is used in chronic gout and kidney disease. It does reduce CRP - but I don't see how that would help in PMR if it isn't dealing with the cause of the raised CRP.
What might be the case is that gout, psuedo gout and PMR may have been mentioned as possible causes of joint pain - gout and psuedo gout are caused by different sorts of crystals forming in the joints and causing irritation. Psuedo gout in particular can appear very similar to PMR and corticosteroids are also an option - perhaps someone was covering all bases.
I really don't know what to suggest about your tooth problem, other than sensitive teeth it isn't a problem I've had. Certainly you may be suffering from a dry mouth - and that can also be due to PMR, as in other autoimmune problems. A dentist is the best person to make suggestions for dealing with such symptoms I would have thought - good mouth hygiene will be a primary consideration.
For possible neck/shoulder problems I will make my usual suggestion: Bowen therapy! Increasing numbers of people on the forums are finding it helps with some aspects of their personal PMR picture, whether it is the PMR itself or "add-ons" is difficult to say but if it reduces pain, discomfort and stiffness even just to some extent I don't think it really matters!
So glad a bit of fiddling with the timing of your doses has led to an improvement. There have been no studies about the best way to use pred - but they are under consideration.