My CRP is down to 12, but I've only ever been on 10mg of pred, so I asked my GP (and told him I learned it from this forum) if we should up the dose and knock out the last of this menace. He is still waiting for my blood work to come back, but he suggested that we might try toggling from 15 to 10 to 15 to 10 every other day.
Have you guys ever heard of this? Tried this? I am his first PMR case, but he is a great GP and read up on a lot of stuff as soon as the diagnosis was confirmed, but it would help if I knew someone who tried that schedule and what their experience with it was.
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schmuppy
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Hello, it depends what you mean by “knocking out this menace”. If you mean suppressing the excess inflammation you have right now, then upping the dose may be sound. If you mean like a purging of all things PMR and a cure then it won’t help because until your body decides not to attack itself, you’ll keep producing the inflammatory substances. The question is, what are your symptoms like rather than your numbers? More knowledgeable people will comment but toggling with 5mg gaps seems too big a jump. Why not do smaller steps to even out the slope and cause less withdrawal? No more than 10% is the usual advice and that rule has served me well. At this level 1mg can make a difference and if you get a relapse with big jumps, you won’t know which level is the actual minimum dose to control your symptoms.
Are you saying 10mg has never controlled your symptoms? If so, then you need to up the dose and gets things under control, be that 12.5mg or 15mg. Then reduce in a timely manner - monthly @ 1mg a time.
If your symptoms are controlled, then you should be thinking about reducing anyway - same method.
As for upping the dose to “knock out the last of this menace” - sorry to be brutal, but that ain’t going to happen. Your PMR is here for the foreseeable future, at least 2 years- probably longer! And it goes when it’s ready to go, not at your, nor your GP’s behest! Macho doesn’t work here! Patience and learning to control, not bludgeon does.
15mg one day/10mg is too big a difference in dose, and is likely to make you feel worse rather than better. Your body won’t like the big adjustment from day to day - it may not sound much, but in percentage terms it is!
Sorry if this is not what you want to hear, but PMR is not like most illnesses.
I can only say I assume he has never tried it! It is far better to take the same dose every day or to alternate doses with only a small difference. Alternating such different doses can be unpleasant - everyone is different of course and you might be OK. I wouldn't like to do it.
Far better would be to take 15mg for a week or so and see if it helps - up to a week you can drop back to the old dose without a problem. I started on pred with 2 weeks of 15mg, then dropped to 10mg for another 2 weeks - I had no problem with that at all. Or the doctor could provide 1mg tablets or you could cut the 5mg tablets and take about 12.5mg every day. I'm assuming the tablets are the plain white non-coated sort so can be cut. If they are coloured they are gastro-resistant and must not be cut.
which is aimed at GPs to help them manage patients with PMR. The reduction they suggest is a good basis - but it may be a bit fast for some patients. You find that out when you try it though.
Symptoms are managed pretty well, I think, on the 10mg, but when I get up in the middle of the night I still have trouble actually getting up, have a bit of the hips issue, bit of the knees issue, etc. I always take my medication at around 3 AM so that it kicks in in time for me to get up and go to work, and I've been doing/feeling better lately as have been losing some weight and eating plant based-no sugar-no wheat (and certainly no dairy as always), but I think I can do a little better as far as pain levels.
My knees are also trashed but that osteoarthritis has been there for years and is a combination of a lot of jogging when younger and being obese for years when older.
If my doc recommends 15 as the upper limit, I may simply go to 15 for a week and then go back down to 10 to see if that works, per suggestions here. Honestly, that sounds a little more logical, given what I've learned on the board here and over the past few weeks.
Def PMR. Hips neck girdle issues, responded immediately to the pred (crp went from 51 to 12) felt lika s new person. A few hours after I fall asleep I may get up to take a bio break and the muscle stiffness (especially the Thigh muscles) makes me feel like tin man in the wizard of oz. 10 mg with some almond milk at 3 am means when the alarm goes off at 6 30 i feel pretty close to all right.
You can't be 100% sure it is PMR - PMR is just the name given to a particular set of symptoms which can be due to a range of underlying conditions and there is no definitive test, just clinical history and symptoms. Unfortunately there are a few things that could appear looking very similar and which would also respond fairly well to pred. I just wondered.
The syptoms can be much the same in early LORA (late onset RA) and it responds to pred. Other inflammatory arthritides can also have a polymyalgic presentation. The symptoms can also be due to underlying cancers - but I don't think that those would respond so well to pred and they are things the GP should rule out at the start by blood tests.
As for AS - one lady on the forum was diagnosed with PMR at first and later had had symptoms of GCA which were agreed as GCA by the top UK expert, but then had difficulty getting below about 10mg. Eventually she went to another doctor up north and as the result of a passing comment about the back pain being about 2am the doctor sent her for imaging looking for AS - which was confirmed. It was the imaging that was essential. switching medication from pred made a major difference. It is a difficult task.
Personally I would prefer to go to 15 mgs, spend a couple of weeks there and then do a gentle taper by 1 mg using one of the slow tapers outlined on the site, back down to 10 mgs. I hope you feel wonderful on 15 and it mops up the niggles.
Hi Schmuppy, I too had similar symptoms in early days PMR. For me the “Tin Man” occurred after periods of inactivity; a car ride, seeing a movie, or sleep at night. It does sound like you need to increase the Pred say to 12.5 or 15 then taper slowly until you find the “sweet spot”. Sounds like you’ve got a good GP who is willing to partner and figure it out even tho inexperienced.
I had similar symptoms at the start of my diagnosis. Started on15 mg Prednisolone for 2 weeks, then 12.5 for a other 2 weeks and then 10. Reduced at that stage by 1 mg monthly to 5mg and then alternated 4/5 for a month, 4 for a month, 4/3 and so on. Now on 2 mg and due to taper to 2/1 for a month.
As said, it might not work for everyone and you have to find thebright dose to manage your symptoms. Good luck and hope you find the regime that is right for you.
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