Hi. I know there is no definitive answer to this. I was diagnosed two week ago and taking 15mg after breakfast (tummy pill first then breakfast 30-60 minutes later, then prednisolone). Mornings are agony and pretty much non-functional. Headache, neck, shoulders, (especially the left), triceps, wrists, fingers, back, hips and hamstrings/calfs (particularly the right). Pain/stiffness at 9. By mid/late afternoon at 5-6. By bedtime 1-2, so at least I am sleeping. Next morning it all repeats and been like this from day 1 of medication with no improvement (getting worse if anything). Got a telephone appointment with the doctor and am intending to ask for an increase in dosage (she has said I should give it three weeks on 15mg). Is this wise (for me to ask for an increase) or does anyone think that staying on 15mg will help in the longer run? Also how long can you actually stay on prednisolone for, (my doctor is already talking of bone density issues and I have only been taking them for two weeks)? Apologies if this has been asked before and I’ve missed it. Regards. LBM1953
Predisolone. How much ? Howe long?: Hi. I know... - PMRGCAuk
Predisolone. How much ? Howe long?
I think you probably DO need to try 20mg - and it might be worth trying to take the pred rather earlier because it is taking a long time to deal with the quantity of inflammation that has developed by the time you do take it. The ideal time is 2am - but that isn't really recommended just yet because your GP is looking to get evidence - and the 2am time gets the pred into the blood stream before the inflammatory process starts again at 4-4.30am and it has a lot less to do so you get relief quicker. Also taking it after food slows things down as well (I'm assuming you are taking plain white uncoated pred and not red enteric coated pred?). You could wake early, a couple of hours before usual, and take the pred with a yoghurt or glass of milk. Then take the PPI stomach protection before your breakfast - its effects last a long time and the problem is still protected again. Lots of us don't take anything - just use yoghurt.
Don't worry about the bone density stuff yet, it doesn't all happen in a week and I have been on pred at PMR doses for 12 years. My bone density is still almost unchanged despite not having taken alendronic acid at all. You need to get a dexascan booked to be sure you know what your baseline status is. You should start with calcium and vit D supplements already though. The rest can be discussed once you know you need something more.
Hi PMRpro. When you say "just take yoghurt" I assume you mean instead of the tummy pill, not the predisolone? Regards. LBM1953
Yes - to calm down the acid production that might cause trouble. As SJ says, the PPIs can cause adverse effects themselves and so lots don't take them. Taking pred with something to eat also helps the acid problem but many of us would say it is greatly exaggerated by some doctors.
I needed 20 mgs to get on top of the inflammation. Some people just do. By your stage I was feeling so much better. Prednisalone just deals with the pain, stiffness and inflammation. It does nothing for the underlying disease which just runs its course underneath. Cytokines- the inflammatory substance is shed by the body at around 4 am. Taking your full dose of Pred at 2 am can be very effective at dealing with this at source and giving you a better morning. If you can bear to wake up to take it and get back to sleep again. I was greatly helped as I tapered down by switching to gastric resistant Prednisalone that seems to take 4-6 hours to get into my system. I take it at bedtime and feel fine when I get up in the morning. I only used Greek style yoghurt to line my stomach as I found Omeprazole caused stomach problems, ironically. Your mornings do not need to be so horrible trust me. PMR (5 years) GCA/LVV 1 year.
Many thanks for your advice, greatly appreciated and it really helps to know that there are others out there. Regards. LBM1953
Hi LBM, from what you are describing I'd say you definitely need to have a chat with your doctor about trying a higher dose. Starting dose for PMR is between 12.5 and 25mg per day and you should expect to receive at least 70% pain relief.
Once your inflammation is under control you can start thinking about your tapering plan. There's lots of useful information in the pinned posts FAQs section. Try reading the 3rd article first (can't remember the title, but it's info for those who are new to PMR and GCA).
Here's the link
There is a definitive answer to your question about pred:
You take as much as you need to manage the inflammation and you take it as long as you need it.
No doctor worth a damn should be denying you a dose sufficient to treat your condition. There's no point in taking an ineffective 15mg dose when a higher dose the job that needs to be done. Remind your doctor that poorly controlled inflammation has its own dangers, which are far more damaging that the side effect of pred, which can largely be ameliorated with calcium and vitamin D supplements.
Because pred can change the way we process certain foods, limit your carb intake, skip the heavy spices and acidic foods, drop the processed foods, and reduce your salt intake.
Keep your exercise gentle (this includes housework and gardening) and punctuated by frequent rest periods. Your focus is on maintaining range of motion. Strength and stamina will return as your symptoms abate.
Once you are on a sufficient dose, you should see an improvement of your symptoms of at least 70%. Once your symptoms have abated, you can begin a taper of no more than 10% of your dosage every 3-4 weeks. Listen to your body, which will tell you if you're going too fast. You may feel an increase of symptoms at the beginning or a reduction which improves over a few days. If you feel symptoms coming back after the first couple of week, it's a sign you went down too far. Step back and rest there before you try again, maybe with a smaller reduction.
Worry about tapering after about 4 weeks have passed. You'll find a lot of good information and plans on this site, especially in the pinned posts and FAQs. No reduction should leave you feeling worse than when you started the reduction. There are a lot of nuances that will come along as you progress. No point in overwhelming you with TMI before you get your current situation under control.
Of course, you can just ask your questions as they arise. Someone here will have been there and done that, and will share their tips and experience. We're all different, so some may work for you and some won't. Don't be discouraged. With time and rest and attention, we get better.
A good response to moderate dose of pred (which I believe can be as high as 25 mg, but no higher for diagnostic purposes) is one of the definitive ways of determining if a patient has PMR rather than something else needing further investigation. I'd say your doctor telling you after two weeks with no improvement to keep on taking the same dose is unhelpful, to say the least. Also, I don't really know, but is it possible the "tummy pill" is preventing the pred from being properly absorbed? Someone will likely know the answer to this.
If you have no history of stomach or digestive problems and are not taking the pill (a PPI?) for any other reason than because you are on pred and doctors are supposed to prescribe it, then it shouldn't hurt to take your pred with a little food, including something like yoghurt, and forgo the pill altogether, and see if the pred becomes more effective. To be on the safe side, don't lie down again after you've taken the pred, at least not in these early weeks while your dose is larger than it will become later.
So I set my alarm for 6 a.m. and took a yoghurt/milk drink to bed. I’m not the greatest sleeper and was awake at 4 a.m. so took the Pred and drank the drink. This morning I feel immeasurably better than anytime in the past two weeks. Pain/stiffness at 5 at most (similar level to late afternoon/early evening) rather than the 9+ that I have been experiencing, got out of bed and dressed without much difficulty, so this morning I am a (relatively) happy bunny. I’m not going to get ahead of myself and I’ll see how the rest of the day and tomorrow pan out (doctor’s telephone appointment Friday). I have two questions:
1. I have yet to take my 15mg Lanzoprazole (before breakfast). I feel fine at the moment (0900 hrs, five hours after Pred). If I don’t take the Lanzaprole, what are the likely consequences stomach/digestion wise? Doctor did not explain what they were for or what they did, (she simply prescribed them)
2. Reading the previous posts, should I be aiming for zero pain for four weeks before tapering or should I always expect to have a certain level pain/stiffness and discomfort? I think that I still intend to ask my GP to increase the dose to 20mg and hope that it I take it around 4 a.m then that will get the pain/stiffness down to zero.
Lastly I can’t say how grateful I am for all the help and advice from everyone, particularly PMRpro, who deserves an medal.
The pred CAN cause gastric irritation and doctors tend to have an automatic set of prescriptions including a PPI to reduce the risk of ulcers developing - they stop the production of gastric acid which could possibly irritate your stomach. Many of us don't take them - they have their own side effects and long term can actually cause loss of bone density, to add to the potential effect pred is said to have on bone density. I have been on pred for 12 years, have never taken a PPI and have neither gastric problems nor any loss of bone density.
Some people manage to get to zero pain but rarely in 4 weeks - it took me about 4 months until the bursitis and tenosynovitis had gone entirely and they do return occasionally if I;m not careful. Unless you take the pred about 2-3am you will tend to have some morning pain and stiffness for a while, as you have found this morning. For some people the antiinflammatory effect of pred lasts over 24 hours so they don't have much in the way of morning problems but in others it last much less time and they even have symptoms return before they go to bed. Once you have all the existing inflammation well cleared out you have a far lower baseline which gives you some wriggle room.
It sounds as if it is getting there - a study found 75% of patients got a good result in a month with 12.5mg. Obviously that requires patience and most people want the sort of result I got - but really that is unusual and it doesn't mean you will have an easier ride later.
Hi, I have always found that splitting the daily dose of pred and taking about 1/3 of it before bed works for me. I take 3mg before bed and 5 mg first thing in the morning. I wouldn’t manage to wake at 2am but I have no build up of pain or stiffness in the morning and take my remaining dose with Kefir Greek yoghurt at 7am.
PMR is a long term visitor in our lives and we have to learn to manage it in our own way and to manage our doctors and their understanding of the condition too. It’s a bit of a juggling act not just at the start but as you go along the route. You are in good company here.
Great advice (as usual). I have have just taken the PPI but if I'm unlikely to have any obvious problems such as diarrhea, vomiting etc I am loath to take them. I'll think on it. Many thanks (again). Regards. LBM
I suspect they are more likely when taking a PPI than with the pred. PPIs commonly cause awful bloating as well as more vague problems. It is said that a third of patients benefit from them, a third have awful side effects and stop and in the other third they don't work!
Depending on how long you have taken them you may need to taper the dose - if you don't you MAY get rebound acid production. After a few weeks it is usually not a problem though.
Many thanks Zebedee44. I had a good day yesterday after taking the Pred at 4 a.m. but as I suspected the PMR did start to kick in before bedtime and by 2 a.m this morning. I was in agony at pain level 9/10. Took the Pred and tried to keep very still to get some sleep. Got up at 9 a.m. with pain level at 2/3 so OK. I suspect that yesterday's benefits were not as a result of taking the Pred at 4 a.m. but because it was only 16 hours after the dose the day before so I had additional Pred in my system. It seems to me that after two weeks I have a dose level that gives me either an OK day or an OK night. It seems to be sufficient for 16/17 hours amelioration. If I am right, increasing the dose from 15 mg to 22 mg dose should provide 24 hr protection but 25 mg would be better and be a "belt and braces". I did ask my doctor about taking the Pred before bedtime and she said it wasn't a good idea as it may keep me awake. I don't think she realises that the pain at night does a pretty good job of that anyway!! Best wishes. LBM 1953
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