I had a flare up in mid January. I was reducing the dose of pred too quickly. That was under my Rheumy advice. I was at 3.5 then. I was in a terrible state so without being able to contact GP or Rheumy I increased my pred. to 9. It took two weeks for my fatigue to disappear and most of the soreness in my back, ribs and shoulders to ease. Depression had set in too but quickly disappeared. I did see my Rheumy two weeks ago and he said he was happy for me to choose how I dose myself. Good that he trusts me to be sensible? I have not been pain free since increasing to 9 mg. I'm wondering if I increase again to ? so that I can have relief in my shoulders. Could I increase to 10 for a day? Or 12 for a day? If this doesn't work can I safely drop down to my current dose of 8 mg having increased for just one day? The shoulder stiffness extends then to my neck and gives me pain in my neck and head. I'm aware of GCA symptoms and I don't have those. My Rheumy has given me Carte Blanche, so any advice from you wise people would be incredibly helpful.
Jan
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Janll
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Just a extra question folks.....it usually takes about 5 hours for my steroids to work, to the point of approx 80% relief. What are your experiences of time/pain relief? Thanks
Hi. My experience has been that it takes at least 5 hours for pred to be effective for me, and then lasts barely 12 hours thereafter. Over the past 2 years or so, I have had to split my dose, and still do so now . Am currently at 5.5 mg per day.
Good luck
Hi Jan
Are your tablets white or enteric coated (brown or red) because that can effect the absorption time.
I have 2.5mg coated & they take about 4&half hours to work & I find the uncoated around about an hour n half(ish) l take them with my breakfast at 8am & usually get up about 9.30am after I've read the papers & my emails etc.
Mrs N x
What time do you take them?
I generally stick to uncoated but am doing a little trial by splitting my dose using coated & uncoated to see if it will help me more in a morning.
Are you sure the I mg are coated? I'd be surprised as enteric coated 1mg in the UK has only been available a short time and most doctors/pharmacists don't know about it. And it is yellow.
Sorry PMRpro ... both 1 and 5 mg prednisolone are uncoated. I take them around 8-9am. I also take thyroxine which must be taken 30 minutes before other meds and food or caffeine. To wake up even earlier than I do now (5:30) to play with meds seems sad, to me. I get quite 'down' when I miss sleep and once I'm up I don't seem to be able to fall asleep again. I've tried a sports massage therapist for my shoulders. She worked really hard and it was painful as she worked the knots out....sadly within 2 hours my shoulders were tight again. You may well be right about there being something else going on. If I sit or lay down in a particular position for very long, the pain increases. I think I will try a higher dose tomorrow and see if I get any success. I do live in the U.K., Somerset. How do you get a medical person to take notice of a particular area that hurts? Besides a Rheumatologist?
Simple things first - yes if you have just taken a higher dose for one or two days you can go straight back. I did it today, the weather has changed and my wrists were killing me yesterday so I took 10 instead of 7mg.
Are you sure the shoulder pain is the PMR? I have shoulder pain that is due to spasmed back muscles as a result of myofascial pain syndrome (MPS, common alongside PMR). This morning I saw a new rheumy here where I live in Italy - she was LOVELY! She had a good poke of my back - and then started doing manual myofascial release, can't explain it other than to say she ran her thumbs along the spasmed muscles with a LOT of pressure. It is painful but it does work to stimulate the muscles to relax - with no drugs and side effects! My GP uses a technique called needling also rather painful but effective! The British medical community just turn up their noses...
Are you in the UK? I used to get a lot of benefit from Bowen therapy and so do others. It may be worth trying a few sessions if you can afford it. Or a good sports physiotherapist/massage therapist may do manual myofascial release.
At diagnosis most doctors would look for a 70% overall improvement in symptoms - many people are never pain-free though. If I have my MPS under control I am pretty much pain-free so I tend to suspect anyone with much pain has one of the various add-ons that are common along with PMR such as MPS or piriformis syndrome.
What are you on? Prednisolone usually takes up to an hour and a half to reach the peak level in the blood, prednisone must be processed by the liver so it takes longer. The new inflammatory substances are shed in the body at about 4.30am - the best time to take prednisone is at 2am - it is at its peak in the blood just as they arrive. The longer after 4.30am you take it the more inflammation it will have to deal with and the longer that will take. Many people wake early and take the pred at 5 or 6am and settle down for another couple of hours by which time the pred should be starting to work.
Is there a different blood test that will show whether one has MPS? My wife is taking prednisone for PMR. Her symptoms have always been pain in the shoulders, shoulder blades, and upper back of the legs. Just not sure how we can try to determine if she could have MPS.
Also, regarding taking prednisone in the early morning hours, we thought it needed to be taken with food. Is that wrong thinking?
Most of us like to take it with/around breakfast to help protect the stomach but she could take it with a sooonful of yogurt. What time is she thinking of taking it?
Currently, my wife takes prednisone with breakfast in the morning. But someone, I believe, it was PMRpro, suggested taking the dosage as early as 2am to have it offset the onset of the inflammation which happens at 4am.
A glass of milk is felt to be enough - and many people eat some yoghurt which is easy to have handy.
Diagnosing MPS is a clinical diagnosis - not everything needs to have blood tests though apparently doctors like them! Not even PMR can be diagnosed with blood tests - the ESR and CRP are only guides, they can be raised for so many different reasons that no-one can say it is only due to PMR. Google it to find articles with illustrations of where the pain can typically be - it is easier than me writing about it!
As MrsN says - she probably will have had a really good day! And that doesn't need anything other than going back to her usual dose today - no taper needed!
PMPro, I am really struggling with very low mood and depression. It seems to come and go - sometimes it takes weeks to lift. I had been doing the dead slow method of reduction and was at 15 mgs. Six weeks ago I was put on an aggressive anti-viral medication I didn’t take to well at all. All symptoms increased frightengly high and after two weeks, I went to 17.5 to try and get help. The dr stopped the whole trial and I am again trying to slowly taper starting today.
I can’t seem to figure out if going up makes me depressed (I certainly suffer from intense emotional feelings on prednisone - often as DaisyChain describes...very teary, agitated, depressed.) or, come by down. I’m guessing any tinkering causes brain chemical problems in me. Just wondering what you might know about that? You always say less prednisone = less symptoms of prednisone. But, then my energy crashes. It’s such a razors edge.
Any insight on how steroids affect the brain would be helpful.
I think you need to speak plainly to your GP - PMR/GCA itself causes depressive mood and pred can mess with your emotions too. Plus having a chronic illness where you lose the "normal" you are used to is a great strain to come to terms with - it is a form of bereavement. It is no shame to admit to being depressed and I suspect quite a few people on the forums are on medication or are having/have had counselling.
Can I be nosy and ask what the trial was for? As if we aren't persuaded to take enough medication - adding another just seems to me to increase the risk of adverse interactions.
is a good review and tackles the reasons too - a hard-ish read but maybe it will help? Remember - the higher the dose, the more likely the side effect and having a history of mental health problems also makes it more likely. Don't panic at anything - it is a wide ranging article so talks about the lot!
I so appreciate your comments. The help you give so many is so wise.
This was very helpful as I didn’t know the illness itself can cause depression.
I will read the link. I work with both a therapist and psychiatrist and have tried different medications to no avail. Yet. There are many I know.
The trial was from a very reputable functional MD who believes I may have an underlying viral infection - Epstein Barr - which he suggested we try and address. Tests show my antibodies are through the roof - yet, this is all controversial as we all have EB apparently and the tests aren’t good enough for active infection.
Most drs say I don’t have GCA (too young; no palpable temporal lobe swelling; no inflammation markers suggesting any inflammation; no biopsy as I have been on steroids too long (it’ll take months to get off 17mgs for them to do one and then we all know the results are less than accurate), but I have 90% of the symptoms. Frankly, no one knows what I have. So I thought I’d give his hypothesis a try.
The fact you take the time to read everyone’s notes, offer really solid information and compassionate encouragement is really something.
You are above the age for GCA being more common - 50. There is a documented case of a 37 year old male (can you get much less typical?) who had undiagnosed GCA which caused a stroke and he died. The "he was too young" brigade couldn't argue as the pathologist made the diagnosis at post mortem. Pathologists know it all - but too late!
But I won't get on my high horse ...
All too often patients with PMR and even GCA go to their doctor because of feeling depressed - and that is what the GP picks up on. Especially if their other symptoms are vague as they often are at the start.
hi Jan I am in the same position as you Rheumys advise to come down from 6mg to 2mg to quickly then all problems came back shoulder and neck pain arms and legs ,went back up to 5mg no good so increased to 8mg that is better but not as I was I think reducing to fast has caused a flare up for me it will be the dead slow method next time .hope you feel better soon
I think Jillanb that with the flare up due to decreasing too quickly, you need to go up to a dose, perhaps to a dose where you remember feeling pretty good. This idea is frustrating as you were getting down to a happier dose. A lesson learned! I am exactly in the same place. I'm trying 2mg up today to 10mg just to see if I feel less or NO pain in my shoulders. If I don't feel any great improvement, I might try going up to 12 tomorrow? I'm definitely NOT going to try a quick fix in the future.
The usual advice for the sort of flare that is almost certainly due to reducing too far/too fast is to go back to the dose you were last good at first. If that isn't enough (usually because you left it too long) then add 5mg to the dose where you flared for a week and then go back to the last dose where you were good.
If a flare is because the disease activity has increased as opposed to you are trying to manage on too little pred - you may need more, even going back to the beginning and trying again.
I thought of that too, going back to square one. Which was 15 mg of prednisolone. I could kick myself. Shout at my Rheumy. It has been 10 months since I first started on steroids. Thanks for your time and advice PMRpro.
Jan
We've all been there Janll thats why the Slow Taper works better for us, perhaps sit at 10mg for a couple of days & take it easy rather than going back to 15mg & starting again but if no improvement then as PMRpro says go back to 15mg
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