I wanted to share that I may have isolated the main cause of the protracted flare issue I've had! I had a great day yesterday, after not having flax flour with my (kefir, cinnamon, fruit and nuts) breakfast yesterday.
I was researching on Saturday evening whether flax flour can hinder absorption of meds taken around same time. Turns out it does. Here's the shortest of the articles:
I swam 8 x25m gentle lengths at the gym yesterday (much more distance than I normally do, at home or in the tidal pool). I took a break after each length and monitored as I went. I was feeling OK after each length so I kept going until I thought i should stop. The rest of the day was significantly better too (i.t.o. pain, foggy head and even energy). Sitting felt like enough of a rest.
Turns out that swim was too much in duration, as quite tired and achey this afternoon (on my bed), in spite of no morning flax again today.
Pain levels are not as high these last 2 days- so it looks like the flax with the preds was the issue! I really hope it is that, as its easy enough to change, and the pain levels have been so much better.
I think the other reason for the protracted flare, is not getting the pacing right. I need to stop before my body tells me to.
Has anyone else experienced this diet issue?
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No idea about the flax as it makes my gut unhappy. I did find that with enteric coated Pred a full stomach was a problem.
Regards not knowing how much exercise is too much, that has always been a problem for me. Real time monitoring is useless for me. I’ve over cooked it so many times that I now know to stop well before I think I should and well before I want to. Occasionally I think, “sod it, what harm can it do, I’m fine” only to be moaning for the rest of the week. The effects of listening to my body (what we keep saying to do!) during exercise or other physical activity backfires here. It can last days especially if I tweak something specific. I think it’s a combination of my body operating on ‘yesterday’s news’ and the feel good factor during the exercise.
PMR seems to prevent your muscles registering they have had enough for this session thank you very much! Which is why the only way to really identify what you can tolerate is to start very low and incorporate at least alternate days of rest and assessment to make sure you haven't overdone it. Then you can make a more informed decision about adding more. Unfortunately. once you have overdone it, it can take more than just a few days to recover and that in istelf can set you back more than you had achieved with exercise.
I can comment only from my experience about flax seed. For years I have had 2 tablespoons of milled golden flax seed at breakfast and since diagnosis in April 2023 have been able to slowly taper prednisolone from 15mg to 6.5mg so far with no problems.
That is fascinating. Thank you for sharing. In an effort to understand this better, can I ask how physically active you are?
Perhaps my physical overactivity has been more of a factor than the absorption of preds.
(I am 51, mother of 4, homeschooling my teens and have no domestic home help, walk and swim a few times a week. Had Christmas, New Year, hosted my mom's 80th and my daughter's 21st all in the last month.
PMR started in Oct 23. Diagnosed in December 23, and just tapered preds 2 weeks ago from 15 to 12.5mg, only because my rheumatologist asked me to)
Perhaps my physical overactivity has been more of a factor than the absorption of preds.
Very likely! ..and the reduction 2 weeks ago may not have helped. 15-12.5mg may be a recognised/recommended taper -but not every can achieve it successfully. If that’s you, then consider returning to 15mg and reduce by 1mg a time…
Then you need to use one of the slowed tapers already - it softens the effect of having to drop 2.5mg at a time. Some people manage to cut a tablet into quarters with a good pill cutter - accuracy isn't critical, just that it is less than the whole tablet and it balances out over the two days taking the bits anyway.
Anyway - I echo DL! Find another pharmacy or look online because 1mg prednisone is listed for Australia. There are countries that don't have 1mg but they are few and far between/
"Perhaps my physical overactivity has been more of a factor than the absorption of preds"
Judging by that list - YES!
And now I have checked your bio and your ocean swimming post- you are not at the stage of developing a flare after 6 weeks since diagnosis. You are at the stage of getting things under control and it isn't just a matter of taking a few pills and you are back to normal. You MUST take time out from your current very stressful and active lifestyle and put YOU first for a while. I appreciate it is difficult at this stage of your life with teenagers and what you perceive to be essential. I too was 51 when PMR started so was also relatively young and fairly fit, at the gym most days. working pretty much full time.
First you must get the inflammation under control and adjust your activity level to match. Yes, I know you want to maintain muscle mass but your well-intentioned attempts to do that may well end up making your situation worse. In many patients with PMR, too much exercise can result in the same effect as is seen in ME/CFS and now in Long Covid where the patient develops post exertional malaise in response to even moderate exercise.
In the past graded exercise therapy was promoted for ME/CFS but more recently it has been realised it actually can cause a worsening of the physical state.
Something has to give - without it you may find this stage lasts a long time as you neither control the inflammation nor learn to pace properly and it MAY result in you being more unable. PMR is dimissed by many doctors as a minor inconvenience that is perfectly managed with a course of pred and burns out in a couple of years. If that were the entire truth this forum wouldn't exist, it wouldn't be needed, It probably applies for under a third of patients - the rest of us have a different journey and it is not an easier one!
cycli started his journey with a similar intention to yours - I hope he will reply and tell you his story of intentions to keep on as before. There have been a lot of hiccups and it hasn't been easy.
Before I developed PMR I was very active, walked a lot and good distances and lifted moderate weights. All that stopped before diagnosis- I couldn't even dress myself due to the stiffness and pain. Prednisolone brought things under control and as my PMR symptoms were less severe in my lower body than upper they resolved more quickly. I have gradually built up to walking about 2 miles regularly (including a couple of steep hills!) But I have found that even gentle exercise with few repetitions without weights on shoulders and arms brings on the dreaded DOMS. I am grateful that I can be mobile and hope to continue gradually increasing my walking distance but I have learned to err on the side of caution. I am waiting patiently for the day I can resume more upper body exercise but I have no control over when that will happen and I know if I try to force the pace myself my body won't be happy. You are right at the beginning of your PMR journey and only just started medication. At that time after diagnosis, activity and exercise worsened my symptoms. Housework like vacuuming was too much, even lifting pans to cook was difficult and swimming out of the question. My thoughts are that at this early stage you need to give your medication the best chance to control the inflammation, which means rest as much as you can. When things are better under control, you will need to gradually phase in activity as you will be unable to do anywhere near the amount you did before PMR came along. That is one hard but essential part of learning to live with this diagnosis. Think tortoise rather than hare!
Just to add I have massively changed my level of activity despite the odd fail as Snazzy describes. I’ve hated it and it’s taken a while to come to terms with a slower lifestyle. However I do think it’s helped with the tapering. I feel for you as you’re much younger and want to carry on as before. I do sometimes feel sad that I can’t do what I used to do but do appreciate small steps. Yesterday I did a three hour round trip alone to meet up with an old school friend. Panicked a bit with fog over the Derbyshire dales but I made it and felt wonderful for the social contact. I could not have done that a year ago. Do take care. I also take flaxseeds and enteric coated pred and have no problem. I think it’s the pacing that needs watching and as Snazzy says, that can be difficult. I too still spend all my spoons at once occasionally, thinking what the hell - then I suffer afterwards. Sometimes though I just have to live a bit of my old life. It will get better if you look after yourself.
Bit late to this, but I have had milled flaxseed with my brunch for about five years. Diagnosed with PMR in November, no issues. I was very active. I’m now onLy walking but hope to build up and back to swim-min* and cycling eventually.
I now have my preds at night, about 11pm in enteric coated capsules. Brunch about 12 noon. That’s since early January. Before then, I tried taking them at all times of early morning, not in enteric coated capsules, so not close to brunch time, except for a few days when I had breakfast with milled flaxseed (on a retreat) within two hours of the preds.
You could just do your own research and doa week or two without the flaxseed?
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