I assume, those of us with PMR, our body makes x amount of inflammation. We take prednisone to reduce the inflammation. We reduce the prednisone slowly. What makes our body quit producing the inflammation it originally started with? Doesn't make sense to me.
Just wondering.
No-one knows - it's a bit like a forest fire that for some reason comes to its end. It may be because it runs out of fuel, or it rains, or it gets cold or the wind dies down.
Good question Linny3. It defies logic doesn't it? As does my Rheumy saying pred is causing my repeated UTIs. He wants me to go down rather than up in dose yet he believes three infections in one week triggered my PMR???????
No idea, but sometimes I wonder if there is some sort of positive feedback loop involved where the attacking of a tissue by the body that sees it as other and the resulting inflammation makes the deranged immune system think it’s even more other so it attacks it. The more the inflammation the more it attacks. The Pred reduces the inflammation so the body gradually stops seeing it as a threat and stands down its defences. Meanwhile it is up to the person to try to stop the originating trigger or triggers because there’s no point in putting out the bush fire if you’ve still got a kid playing with a box of matches where it started. So, for some it is a simple matter of removing the trigger like an infection but for others it is a collection of issues. I think in some once the body has had a taste of the vessels being other it doesn’t quite go away so you get a ‘cold war’ rather than an all out invasion. In my case I’d guess that it was chemo that made my body suspicious of my blood vessels and then I lived an impossible to stay healthy lifestyle in body, mind and spirit, especially mind and spirit. So, my working theory was that I had to make massive changes like giving up my career, do a psychological overhaul and treat my body differently. I never battle it. I may be barking up the wrong tree but I find it helpful to have a working hypothesis. That’s my theory anyway.
Great question. ✔️
At the London research roadshow, Prof Mauro Peretti, who's an immunopharmacologist, says that inflammation doesn't just peter out by itself (as used to be believed), but that the healthy body has a mechanism for turning on anti-inflammation chemicals that damp it down, like a hosepipe on a fire. A healthy body will normally switch this mechanism on, but in some cases (e.g. PMR) it becomes chronic and the hosepipe doesn't turn on. So in some cases of PMR, the body will gradually right itself and start to reduce the inflammation by itself, but in other cases it won't. He says we are on the verge of developing 'resolution' drugs, which will work with the body's natural defences to extinguish the inflammation. These will be much safer than the drugs we are using at the moment, which are working against the body, because they will be working with the body's natural healthy processes. In the meantime, we can help ourselves by taking omega 3 oil, because this contains one of the chemicals that helps the 'natural' anti-inflammatory processes.
Did he recommend a dose? I've just starting taking it.
I'll go back and check.
Hi. The study Prof Perretti quoted looked at a number of people with Rheumatoid Arthritis who took between 1.6 and 7 gm of omega-3 a day - worked out at an average of 3.5gm. Which is quite a lot! It would work out much cheaper to buy it in a bottle than as capsules. The study is Norling, L et al Proresolving and cartilage-protective actions of resolvin D1 in inflammatory arthritis 2016 JCI Insight.
That would be a good article for the newsletter/on the website.
I wonder if my little increase in stiffness has to do with the fact that is thundering, lightening and raining outside. 
Just read the reply about taking omega 3 oil. My pharmacist says I am wasting my time and not to bother. I was on it. Just take an all around multi vitamin so that is the route I am on
That isn't quite the same thing that the researcher was pointing at I suspect.
Hi - have a look at the reply I gave further up that gives the reference to the study. It talks about higher doses of omega 3 than your pharmacist would be used to selling.
I think many of us here are desperately trying to work out what their PMR trigger was. I still don’t have a clue but went to a talk about Brain and Gut Health yesterday and a lot of fascinating points were raised. I firmly believe there is a connection there. Don’t believe it gets a lot of support from our “western medics” yet though but there is now so much research going on some sort of connection will be made.
Still don’t know where to begin myself especially now I have been on prednisolone for 3 year. How can we separate ourselves from all the drugs we have been taking to find that original trigger. If I’d known three years ago when I popped that first pill that I’d still be here three years later, struggling to taper or rather struggling to find the patience to deal with all of this, I would have despaired but I still don’t think I’d have asked the right questions. It’s taken these three years and the many fascinating and varied experiences of everyone here which has educated me and encouraged me to explore possible options. I still take my Omega 3s, vitamin D, turmeric and a probiotic. I make my own kefir. I don’t know if any of this helps but I don’t feel it does any harm and perhaps it supports my body to deal with the drug cocktail I’m currently on. My rheumatologist didn’t disparage me when I told her what I took. Perhaps it just helps me believe I’m doing something to help myself.
Still don’t understand how or when the ‘inflammation ‘ will go away but as many here have achieved it I still hold out hope!
My language may seem militaristic but my approach to self care is anything but. I dislike the thought of going into battle and fighting my body when it goes wrong.
As I get to lower doses now, I do wonder what effect is of having low cortisol from long term suppression. Given that cortisol helps to suppress cytokyine production and action, having not enough and low levels of Pred too, could leave one open to a double whammy of trouble. Perhaps reducing Pred below 5mg really needs to be very very gradual to avoid the even worse than normal reaction to cytokines.
My questioning throughout this whole process from the start. After the inflammation reduced down to CRP @ 0.9, (from 38 when diagnosed as having PMR 22 months earlier), i chose to come off the pred. (as the dose then was @ 1 to 2 mgs.). In three weeks i after a long flight i was very stiff and dissappointed in the mornings. It would ease off after 11am. Not having my usual regime for exercise, maintaining movement was key but it got increasingly difficult. When i returned home the pain in my shoulders was relentless. The achey legs took a back seat. I was curious if my proplems were strutural in nature. I went for a postural assessment which was revealing. Regards forward head carriage, spinal rotations as per mild scoliosis, a bone spur in the lumbar region, a titled pelvis for example - I would be developing symptoms over time. Life happens and some discomfort showing up even when young i guess i feel fortunate to have these clues now.
Technically i am prefering to address the idea that blood flow and nerve supply to the joints can be improved. It is thought if you can bend it then rehabilitation is possible.
First apply principles re alignment over weeks with specific subtle movements re joint mobility (re bursa/tendons) and increasing abilities as per strength and balance. Referred pain is lessening. Having to move all time time though must be good for blood flow and hydrating muscles. When the typical bigger muscles are tight/cramping then can find opposing muscles that need strengthening. Getting the pumps going in our limbs is interesting.? I think walking is great in general. Walking and water stretches are good for a range of motion. For me walking over varied terrain say 20 minutes each way gives me a range of movement i need to compliment the assistance i have been getting. Good heart maintenance as well. I have got to a stage where i move quite well but aches and some twinges arise each day to let me know i need to shift. Thanks for your patience. These are the options i have chosen to explore.
I like to think of it not as a battle but as a confusion. somehow my immune system got confused..I suspect from my bike accident I had followed by long flight 4days later with cracked-bruised ribs+ followed by flu from the long flight and it just said ENOUGH. NOW I do not know WHAT to fix so I am just attacking everywhere, how about these blood vessels? And once derailed it could not just hop back on track. So to help it back now I eat right , as best I can, exercise, take my meds, and send messages of comfort and peace and encouragement to all those immune cells telling them they are okay and can do their job properly any time! so far so good. I wish they would fix themselves faster.. but being impatient with them probably just confuses them further. !
Sounds really frustrating Linny3. What shape do you think your spine is in after falls. Sitting and lying down is a clue something is up. Is it possible that if alignment is out then blood flow and nerve supply is affected. The body wants to correct itself but all hell breaks loose if you know what i mean. Referred pain is akso a clue. It is tricky eh?
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