Serious Flare

[Daylily2000]

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?

[Louisa1840]

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..

Good luck with it. I wish you well.........

[Daylily2000 in reply to Louisa1840]

thank you, Louisa. Because I’m borderline diabetic at this point, I’d sure like to get lower and stay there!

[PMRpro Ambassador in reply to Daylily2000]

Have you cut your carbs drastically? Especially processed carbs, added sugar and some fruits.

[Daylily2000 in reply to PMRpro]

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! 😳

[Wallysma in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Wallysma]

Usually it is recommended to stick to berries.

dietdoctor.com/low-carb/foods

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!

[Wallysma in reply to PMRpro]

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.

[Daylily2000 in reply to Wallysma]

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.

[Wallysma in reply to Daylily2000]

I have stuck to blueberries but I am getting sick of them. I thought apples and grapes were too much sugar but it seems ok then? Thanks.

[PMRpro Ambassador in reply to Wallysma]

All the numbers quotes in the Diet Doctor images are for 100g/3 1/2 oz of fruit. You need to weigh stuff to be able to compare them.

[Wallysma in reply to PMRpro]

👍

[PMRpro Ambassador in reply to Daylily2000]

Actually, if you look at the Other Fruits picture you will see that a whole orange has just over half the carbs of the same weight of grapes!

[Wallysma in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Wallysma]

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!

[Wallysma in reply to PMRpro]

🥕 👍 🍌👎

[Daylily2000 in reply to Wallysma]

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.

[Wallysma in reply to Daylily2000]

I will try that and see. Thanks.

[PMRpro Ambassador in reply to Daylily2000]

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.

[Daylily2000 in reply to PMRpro]

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?

[PMRpro Ambassador in reply to Daylily2000]

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.

[Daylily2000 in reply to PMRpro]

I do find I feel better if I avoid gluten, but this could be entirely psychological, I suppose.

[PMRpro Ambassador in reply to Daylily2000]

Mmmm - but is it the gluten - or something else as it is for me? Or just lot less wheat in general - which is what HeronNS realised.

[HeronNS in reply to Daylily2000]

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.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

“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! 🧐

[PMRpro Ambassador in reply to HeronNS]

They sell it here too - gluten-free. Lot of coeliacs here!

[DorsetLady PMRGCAuk volunteer]

This link contains genetic advice for dealing with a flare - so not dissimilar to advice given -

healthunlocked.com/pmrgcauk...

[Daylily2000 in reply to DorsetLady]

Thank you, DL!

[borednow]

Indeed it does. Sounds like a sensible Doctor. Feel better soon.

[Daylily2000 in reply to borednow]

Thanks, bored!

[PMRpro Ambassador]

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.

[Daylily2000 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Daylily2000]

If 10mg works - no point at all in going to 20mg, that is just 300mg of pred you very probably don't need at present.

What dose were you at when the achiness started? And how often were you reducing?

[Daylily2000 in reply to PMRpro]

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

[PMRpro Ambassador in reply to Daylily2000]

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.

[Daylily2000 in reply to PMRpro]

After 6 years of PMR, the easy reduction to 4 made me hope this disease had run it’s course, and I might quickly reduce to zero. But apparently not.

[DorsetLady PMRGCAuk volunteer in reply to Daylily2000]

Yes, but as we say (ad infinitum) at low doses, even 0.5mg really can make a huge difference...as many can testify...

..so when back on track, small step and slow tapers..it really is the safest way.

[Daylily2000 in reply to DorsetLady]

I was lowering my dose from 4 to 3.75. At these lower doses I had begun to reduce by only .25mg.

[arvine in reply to Daylily2000]

I am curious, even with pill cutter taking a .25 mg, how are you able to manage that, or are you able to get tablets, less that 1 mg?

[DorsetLady PMRGCAuk volunteer in reply to arvine]

If you have a 2.5mg tablet - half of that is 1.25mg - add to another 2.5mg and you have 3.75mg....

You just need to think outside the box....

[arvine in reply to DorsetLady]

thank you, I only have 1 mg tablets, don,t know if 2.5mg tablets available here in Ontario, but I will inquire,

[DorsetLady PMRGCAuk volunteer in reply to arvine]

They may not be, and they are a bit scarce in UK at times....but no harm in asking.

[HeronNS in reply to arvine]

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!

[MikeVanBC in reply to arvine]

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.

[Daylily2000 in reply to arvine]

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.

[PMRpro Ambassador in reply to Daylily2000]

Nowhere has pred in denominations below 1mg - far too expensive to produce for the very small demand there would be,

[Louisnhoe in reply to Daylily2000]

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..!

[Daylily2000 in reply to Louisnhoe]

Thanks for sharing that. We think we have everything under control, and then Wham! It bites us in the posterior!

[PMRpro Ambassador in reply to Daylily2000]

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!