I’ve had PMR since 2018 and had reduced to 4mg prednisone. Was feeling well until I began reduction to 3.75mg. Started having minor discomfort in arms/legs and went back to 4.5 a few days. Which seemed to help.
Then, the day after Holiday meal one week ago, I had a true flare. I then upped my dose to 5 and this helped for most of the day, but not pain free as I had been in the past. I continued with 5mg. but this morning I began a flare like I’ve never had before. Muscles in arms and shoulders have throbbed with pain. I take my regular dose in late afternoon each day. I took another 5mg about noon today, with little relief.
I called my rheumatologist and talked to nurse about this, who then talked to my doctor. I requested higher dosage for this flare.
Nurse called back and told me the doctor wants me to take 20mg daily for 10 days, then 10mg for 10 days, and then go back to 5mg as usual.
Does this sound reasonable to you?
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Daylily2000
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Hello Daylily. It sounds very sesnible to me! It's obvious the inflammaton from PMR has been allowed to build up to such a level to give you such severe symptoms. Going back to this high dose will mop that all up. Then drop to ten and on to 5 again. It's what I would do..
yes Pro I lowered my A1C from 6.3 to 6.0 by lowering carbs + more regular walking. Hoping to continue this pattern! We had our Thanksgiving dinner last week, and the menu is nothing BUT carbs (except for the turkey.) I even ate PIE! 😳
What fruits do you avoid? I am trying to put a shopping list together. I assume no oranges, bananas...what else do you stay away from? Do you have any grainy bread? Thanks in advance.
scroll down a bit and you will see visual guides - one is for fruit.
Personally when I'm doing low card conscientiously I eat no bread on a regular basis, it is a once in several weeks treat whether it is grainy or a bit of baguette!
I lost a ton of weight a few years ago doing low carb....I did have 1 piece of whole wheat grainy bread with cashew butter on it for breakfast. But with this.I think.I need to be more strict possibly. I never used to eat breakfast when I worked just.lots of coffee. But I taught myself to add it and did feel better. So I will see what happens. I love the cashew butter....omg I could bathe in it. But the bread is key obviously. Although spoons of cashew butter sounds yummy.....lol. thank you for the info. Take care.
I haven’t avoided fruits, altogether. I use blueberries in my morning cheerios, and keep black grapes on hand for snack in the afternoon. (With oranges I just say no! Pure sugar.) I do eat an occasional apple. Grapes may be too much sugar, but have been able to reduce A1C by avoiding processed sugars and walking as much as possible each day. Most days I can manage to walk 20-30 minutes, but back problems tend to dictate this regimen more so than PMR.
I was surprised at some of them. I want to try the barbecue recipe. Thanks for that link. I like to ear one fruit a day....oranges work for me. Need to see what other berries are available.
Most people are! I actually prefer above ground veggies - I don't like sweet things that much. Currently chomping on a carrot - should have weighed it but bound be better than a banana!
I forgot to mention breads…I try to avoid the usual wheat bread, but have found that gluten-free bread is okay for me. It uses no wheat, oats, etc. Main ingredients are brown rice flour, sorghum flour, millet seeds, and others I’d never heard of.
What do you mean by "is OK for me"? Carbs are carbs - whether they are gluten containing or not. Most commercial gluten-free products are very carb-dense as they use a lot of sugar to make up for taste.
I meant that it doesn’t give me the usual carb reaction of weight gain and feeling of carb overload. Could be I just eat less of it. Do you know if gluten has inflammatory effects?
It is said it does - but I think gluten really doesn't have much role to play. We have coeliacs on the forum and I was eating g/f when my PMR started as that was the only way to avoid wheat at the time in the UK. I am able to eat other forms of wheat (spelt and kamut) and rye and barley aren't a problem - it is an allergy to wheat starch not the gluten. Often the cutting wheat helps because of the massive reduction in carbs it can lead to - lots of people comment they hadn't realised how much they had been eating. And the most common breads are made with highly refined grains which mean they cause a spike in blood sugar which is also pro-inflammatory.
It seems that modern wheat is not as good for us as the traditional grain. Whether this is due to changes to the grain itself or to its processing I don't know. Although I believe GMO wheat met too much resistance from farmers so we aren't subjected to that, they do use glyphosate as a drying agent at harvest time and that can't be a good thing for us.
Also I've found that the sourdough bread which became so popular with the pandemic is much kinder to me. Another thing I discovered is pasta made from rice (sorry Italians) actually holds its texture and works just fine with a nice sauce, although wheat pasta has more flavour.
“It seems that modern wheat is not as good for us as the traditional grain.”
Not it’s not, because it’s been “bred” to be more resistant to disease (not necessarily GM), shorter (easier to harvest), multi-purpose and mass produced to make it cheaper for consumers…. Think it’s called progress! 🧐
Personally, I think it sounds a bit OTT to be honest. Our first suggestion here would be the 10mg for 10 days but not drop back to 5mg - you need to be above where the flare occurred. The question arises though as to whether this is a flare because you overshot the dose you need or if it is a real flare in disease activity in which case the dose you were at may well not be anywhere need enough. But the 10 days at 10mg should clear out the leftovers of inflammation and then you can see f 6mg i still enough.
Why do you take your dose so late in the day? Pretty much all the inflammatory activity is early morning, about 4am or so. You are taking the pred at a time when there is minimal disease activity but there will be maximum effect on the part of the pred.
Thanks very much for your response, Pro. This flare was like I’ve never had before. Was simply achy for a few weeks before it became suddenly horrible.
This morning I have no pain, so the 10mg I had in the past 24 hrs (split dose) was effective, apparently.
The reason I take the pred in the evening is that the first time I started treatment was at this time of day, and also wanted to be assured of a pain free sleep at night.
I’d like to keep my dose as low as possible, so would like to start at 10mg rather than 20 since the two 5mg doses I took yesterday seems (so far) to have given me great relief.
I’d like to just take 10mg daily for 5 or 6 days and then go back down to 5. I was doing well on 4mg before this happened, but had only been at 4 6-7 weeks.
I had been at 5 mg for a very long time with no pain, and tapered down to 4mg with no withdrawal at all. But when I started tapering down below 4 the pain began.
I have let my body be the guide for when to try tapering again. If the transition to the lower dose causes little distress, or short-term discomfort, I reduce the dose in another 6 wks or2 months. But, I had been on 5 mg for more than 6 months
I suspect that you went past the minimum dose you need during the 5 to 4 taper - it can take some time to build up enough inflammation for it to feel really bad and then when you took away another tiny bit, crash.
I don't think 2.5 is available in Canada. But I think it may be just possible to cut a 1 mg into four pieces. Can't say that I've tried it, but have got pretty good at getting approximate .5 mg over the years!
Hi Arvine, I’m in West Van and can only get prednisone in 1 and 5 mg sizes, but find it very easy to snap both in half, either with a pill cutter or even with my thumb nails. It’s also easy to cut the now 2.5 mg pills in half, and end up with a pretty comprehensive selection to target any dose you want.
we have nothing here lower than 1mg. I use a pill cutter and cut each tablet into 4 parts. This is not easy to get precisely equal amounts, true. But it’s close.
Hi Daylilly..I am in the same situation as you..I reduced from about 4 months on 5mg to 4.5 and then 4mg and feeling ok although maybe a bit achey in the mornings which I put down to adjusting to new dose..then went to 3.75 and pain back properly! I am currently treating as advised here with an extra 5mg for 7 days and then 7mg for 5-7 days and will then go back to 5mg and hope all will be ok..I was going to go to 4.5 but after re reading my diary I really can't be certain when inflammation started building..obviously somewhere between 4 and 5..I am sure that 5mg was enough as I felt completely pain free at that and ESR results also reflected markers were down..fingers crossed for our onward journeys..!
To echo DL - there are people who were fine on 1mg a day, occasionally even 1/2mg a day but when they tried zero, the symptoms were back after a few months. That's why we say the lower, the slower. That last mg may take a very long time to be safe!
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