Did anyone see the programme on BBC this evening about the immune system ? It was very interesting
BBC programme: Did anyone see the programme on BBC... - PMRGCAuk
I recorded it but haven’t seen it yet!
Though something tells me I won't learn much new ...
I did see a snippet.....about getting VitD from sun,.....not much chance in UK at the moment!
Never mind time of year - it infuriates me because at 65 you make about a quarter of what you did at age 20 in the skin. There are various contributary factors - but even 20 year olds who sun-worship are also deficient. And why do they always mention diet? You get less than 10% of what you need from diet - unless you almost exclusively eat salmon with a mushroom omelette starter ...
A thought, has the human race always been deficient in vitamin D or is it something, for some reason, that has happened in recent times? Does the problem with the ozone layer have anything to do with it?
Originally there wasn't the same obstruction in place! Starting with clothes... Later the workplace moving from outside into the dark satanic mills of the industrial revolution, especially in the context of child labour. And now Factor 50 sunscreen and avoiding the midday sun..
The role of vit D in the prevention of rickets was first realised in the early 20th century - and vit D from sunlight identifed as the cure.
There has been a return of rickets in recent years - reflecting to some extent in the factors being touted as risks for the spread of Covid.
Thank you for that. I hadn't associated Ricketts with Vit D deficiency- definitely not new then. Loved this phrase from the document
"a stronger insistence on daily exposure of the half-naked child to the direct rays of the morning sun;"
Just trying to imagine the outcry there would be today with that thought!!! always assuming you can find the morning sun of course
Yes I saw it, I couldn’t relate it to pmr inflammation. The main messages for a healthier immune system seemed to be improve your gut flora by eating more fibre, take regular moderate exercise, get a good nights sleep. Very interesting & worth watching.
I did catch bits of it, but intend to watch it through properly on 'catchup'. I'm slightly baffled at the confusion I have around the immune system and PMR though. We're taking steroids to deliberately suppress the immune system in order to reduce the inflammation in our body, so surely any efforts with healthy diet, supplements, exercise etc, to strengthen our immune system will be counterproductive? I eat healthily and exercise within my capability but don't consciously work hard to strengthen my immune system as I feel this is not what I should be doing if I want the steroids to be the most effective they can be! Have I got this wrong? Any thoughts?
I'll watch it shortly but your thoughts sound very logical.
Haha!...3.30am!! Can't sleep again! 🥺
That's normal for me but not good for you. How about some hot chocolate? I went right back to my childhood a few weeks ago and bought some Horlicks!
Done! Hot choc....delicious. I don't actually mind being awake some nights to be honest. The peace and 'space' is very welcome.
I used to be given a cup of Bournvita every night by my mum when I was a little girl. I would rather have had just warm milk, but mum said it would make me more "robust"! 😄😄
That was the other drink we had at home, my brother and sister loved it, I couldn't stand it. Perhaps given the joys of our ailment, the "robustness" of both drinks was a bit of a failure. I remember also being given cod liver oil capsules which I equally couldn't stand but may have been more useful.
Haha! I also was given a Haliborange (Vit.C) tablet every morning before setting off to school! That didn't make much difference either but I loved them.......had a really strong orange flavour and if you rubbed them on your lips, it looked like you were wearing orange lipstick!😄 So grown up....not very stylish though!
Forgotten the vit c, we had little white vit c tablets, got a feeling mum probably acquired them from work!! Nearly finished the BBC programme and given that I eat sensibly and well, exercise well, apparently my immune system should be in perfect shape! Life is very confusing
That's good news on the one hand, but if we're hindering the work of the steroids by strengthening our immune system (because the job of the steroids is to suppress the immune system, to stop the inflammation) then surely we're going to slow down any recovery? Don't we WANT our immune system to be suppressed in order for the steroids to fully do their job?
When polymyalgia rheumatica (PMR) occurs, the body’s immune system attacks its own connective tissues, causing the tissue of the affected joints and occasionally arteries to become inflamed.
In short your body is attacking a part of your body.
It is somewhat like a car that isn't running properly. When you take it in, the mechanic turns the car off and says he fixed the problem.
I think it helps to think of the body as a whole, not just 'the immune system'. Eating well, sleeping well, exercising, being outside in the sun etc. are good for us and promote good health regardless of what we're taking to dampen down our immune system. I've recorded it and am going to watch it now! Good discussion, thank you!
You've taken me right back with Haliborange and Bournvita!!! Haha
Whst was Virol? Haven't heard of that!
I can't remember ingredients but was sweetish, thick and syrupy. It was around in 1950's especially if you had severe illnesses like measles to build you up!
I've just googled it and apparently it eventually became Bovril! It was a malty health drink. I can't recall it at all though.
I just had a quick Google too! Malted extract with molasses. I hated the likes of ovaltine and Horlicks
Me neither - but isn't it fascinating what you can learn with google!!!
I think Virolax rings a bell. But it isn't so much it became Bovril - I get the impression it was a Bovril-plus experiment, creating a sweeter rather than salty malt extract. Sounds like next thing to an infusion of sugar ...
Haha! Whatever it was, it sounds revolting! I think I'd rather stick hot pins in my eyes than sample that!! Yuck! 😂😂
That's a new one to me I don't know Virol at all
Perhaps you are spring chicken!
I suspect not. 1949
Oh dear, still younger than me! If it became Bovril I wonder if that's why I am a Bovril girl and not Marmite. Very sweet to savoury - interesting.............
And Rosehip Syrup!!
We seem to be all the same generation as I remember haliborange! Like you say, it was a bit confusing. I wonder if our problem is to do with the ratio of neutrophils and lymphocytes ?
I remember that in primary (then infants') school we were given Haliborange which I loved, as well as orange juice. This must have been immediately post war. (I'm vintage 1940).
I take Omega 3 oil tablets and they do seem to work a bit - especially for OA.
CLO - used to have it off a spoon as a child! Horrible! 😳Tried taking the capsules as an adult when it became all the rage, and just the smell made me feel ill! It might be good for you, but no thanks.
I remember having Malt and Cod Liver oil, thick, sweetish off a spoon, I loved it and always wanted more. I am 1947 vintage.
Ah, cod liver oil. My mom gave us a spoonful every day. I loved the taste so much, I got into it on my own and drank quite a bit. My mama scolded me, yet can’t recall if I had any problem with it.
Morning Bcol. In my day. ( many moons ago) it was Ovaltine.
Morning Yulik, yes I remember Ovaltine another of my Brothers favourites, but not mine. Very cold and misty here and about to be brave and walk the bowwows on the moors.
Quite envious of you stepping out on to the moors. Must be lots of nature to see. Lifts the heart and soul. I have a river and meadow outside my front door and my walks there have sustained me so much, particularly on those 'down' days! I even get ywaterproofs on, on rainy days and still go for my walk. Really helps. I see so many different species of birds from Jay's to Reed Buntings, Muntjac deer to Slow worms. Amazing!
Back from walkies, really didn't see very much today as it is/was very misty, frosty and beautiful underfoot but couldn't see far. Still a very enjoyable experience though and very lucky to be able to have my daily walk like that. Meg, the Border Collie, had frost all over the ends of her fur when we got home, I should have taken a picture.
I had a lie in until 4.20! Don't like to boast....
I 'like' to boast!😂😂 I sleep 9 hours every night.
Haha! I've just woken up as BCol's suggestion of hot chocolate did the trick! I normally sleep from about 10.30pm to 4.00am though.
Seems to me the advice given was only really appropriate for any good lifestyle.😂😂
I don't see it as strengthening a weak system but more as reordering a deranged one.
Ok......so if I do all the right things that would maintain a healthy immune system in a healthy person, I'm not making the job of the steroids harder.....I'm kind of re-setting my immune system??....or re-stabilising it??
The conclusions were based on 'normal' people. They said that the immune systems were 'out of balance' whatever that means. I have to say the program was on at my nodding off time so I could've easily missed bits!
Well now you've said that....I'll own up to the same thing.....I started to watch it at 9pm and woke up at 9.55pm!!😂😂.....and probably the reason I couldn't get to sleep!!😄
My understanding is that the pred reduces the inflammation part of the disease - but it has no effect on the autoimmune part and any damage being caused by that will continue. So we are using pred to deal with the inflammation. The pred does not stop the autoimmune part of of the disease so we are waiting for that to slowly disappear as we slowly reduce our pred without letting the inflammation flare. Over that slow improvement we have no control. For some people it takes 2 years, for others much longer. I'm entering year 6 on 2.5 mg. I'm in no hurry and have no timetable.
So pred is dealing with the inflammation, but has the side effect of suppressing our immune system. Anything we can do to improve our immune system is good. In that respect the programme was helpful as it was very sensible and science based.
I'm very sceptical about magic foods and diets that boost the immune system. But I thought this programme was excellent. There were some good things on diet and exercise which I think we all know. I'll be eating more seeds! Other things like the cold shower effect on boosting the immune system was news to me. I'm now on day 2 of cold showers and determined to continue.
I think boosting the immune system for PMR sufferers is a sensible thing to do. Pred deals with the inflammation, but its side effect is suppressing our immune system.
I hope I've got the science right!
I have recorded it and was going to watch when I took my Pred but got caught up watching the worrying events in America.
Yes I did!But nothing about pmr etc...shame
That sounds very interesting, I’ve have been taking Symprove for around 4 months now after a friend was recommended it by her consultant friend for her COPD
I watched the whole programme. I think it was presented in a way that pretty much everyone could understand, really simplifying the complexities of our immune systems. The message was clear and simple; eat healthily - lots of fibre, exercise regularly, sleep 8 hours, don't drink too much alcohol, have 30 second cold water at end of shower each day . . . and the odd massage could be good! Regarding boosting immune system being counterproductive to taking steroids (I am currently on 6 mg for PMR), it is confusing. I wonder whether we in the PMR community should be focussing on anti-inflammatory diet rather than boosting immune system? I am now reading Health Revolution by Maria Borelius. It is one woman's story of researching and discovering anti-inflammatory theories, foods, life changes. It is very readable (took me past midnight last night!). My thinking is that the steroids are hopefully doing their job (they've certainly eliminated the pain) but when I come out the other side, I want to ensure that I control inflammation through diet, lifestyle etc. I have no idea why I got PMR, but I also had IBS years ago which is also an inflammatory disease. The anti-inflammatory diet is all healthy so it won't do me any harm. It will also help with weight loss and blood sugar. My monthly blood tests for inflammatory markers revealed higher blood sugar (i.e. pre-diabetic) but I have managed to bring that down already.
What an interesting chat this morning. I remember Horlicks and Bournvita neither really helped me sleep any better. My mum used to give me cod liver oil capsules which I then secretly fed to our corgi who lived a long and healthy life!Is there an English recipe book for an anti inflammatory diet, I’ve got the American one but it’s all cups of this and that and weird ingredients.
I sort of go between eating stuff to improve my gut and stuff to help inflammation, both are healthy diets but as I now have PMR as well as Diverticulitis I am between the devil and the deep blue sea.
Also love my early morning dog walks whatever the weather, nature and fresh air and two lively chocolate labs always start my day well. Have a good day everyone.
My mum used to line me up and give me a tablespoon of black gooey stuff, followed by little vitamin tablets, and a raw egg - she said she would give me 3 d (old currency) but kept owing it to me, I found an old diary from the 1970s which had a running total of what she owed me in the top right hand corner of each page !
I too have often pondered the conundrum of healthy immune system vs immune system in overdrive attacking our own bodies. I like PMRpro's idea of reordering the system. When I was working we had regular health checks and one of their magic tests told me I had a very good level of antioxidants and I have sometimes wondered if they somehow ran amok and caused pmr? Or maybe not the same thing at all.
Virol - mmmm it was delicious, almost worth being poorly to have a spoonful of the lovely stuff. Sweet, but not as sweet as honey or sugar, almost toffee like. On the other hand, liquid paraffin, for a different disorder, had a most sinister taste...🤢
Hi. I missed this prog but would like to see it. can you tell me the name so I can find it in catchup. thank you.
I was disappointed they didn't include anything on immune suppressants as we are all on them would have been helpful to know how soon immune system recovers from steroids and if VD and diet help.I take D anyway for osteoporosis hopefully keep me safe from virus!
A breast cancer charity says
"Treatment can last for anywhere from 3 to 6 months. During that time, you would be considered to be immunocompromised — not as able to fight infection. After finishing chemotherapy treatment, it can take anywhere from about 21 to 28 days for your immune system to recover."
The chemotherapy used in BC is the big brother of pred so I imagine that applies equally to most of the immunosuppressants any of us are on - not least because the effect will also be dose dependent. MTX, for example, is used at a tiny dose in rheumatology in comparison to that used in chemotherapy.
In most patients on chemotherapy the immune system has recovered by the time the next round of chemo is due - and often if it hasn't, it may be delayed until the white cell numbers have improved. Letting the immune system be clobbered too far is a risk that may require total isolation during the treatment so actually being on long term low to moderate dose pred as we are is setting a minimal risk in comparison.
Interesting.. but if they say it takes 21-28 days for the immune system to recover, why does it take so much longer for us to recover ?(I've heard it takes about a year for adrenals to start functioning properly again after taking Pred)Maybe because we're on it for longer? Or maybe it's a different part of the immune system that's affected?
Different systems - the immune system has little to do with the HPA system (hypothalamus, pituitary, adrenal glands). It is the production of white blood cells by the bone marrow and lymph nodes/thymus that matters and as soon as the suppressive action of that is less, production of blood cells starts again.
Oh, yes of course (different systems) dur!. So that sounds like the immune system (white blood cells etc) will bounce back into production quite quickly. I wonder what dose of Pred you have to reach to enable this to happen. I think someone asked this before but I can't remember where the post is or what the reply was. Thanks as always!
Are you not getting regular full blood counts? For the vast majority of us those levels remain acceptable - the doses of medication we are on are not such as to get us into a state with no immune system - just it isn't quite as good as it could be. I'd say I have had fewer infections over the years on pred than I did before - OK, fewer symptoms due to the inflammation being suppressed by the pred, but rarely ILL either.
The HPA axis and the immune system are integrated systems with an extensive communication network that is extremely complicated. You can't have one functioning properly without the other.
The details of this link aren't as important as getting an idea of the complexity.
I watched the programme and they did mention that stress can put the immune system into overdrive and start attacking its own tissues - they used allergies as the example. So many of us have described being under stress before PMR and GCA were diagnosed. I know I was. I thought the programme was very balanced and as 'evidence based' as you get with a small sample of subjects.
Just watched it....interesting to hear the comment about children growing up on a farm or outdoors in general are less likely to get allergies than those in urban areas. Reinforces my mum’s view - that a dollop of good old fashioned dirt never hurt anyone!
....and that sleep is good, I win on that one!
I thought the programme was very interesting too, albeit mostly common sense.
I was intrigued by the measure they used on the volunteers to assess progress though (their neutrophil to leukocyte ratio or NLR). A little bit of Googling suggests that it’s usually elevated if inflammation is present. I checked mine from previous blood tests last year and it was in the region of 1.4 (brilliant according to the programme) although my ESR at the same time was in the 30s, 40s and 50s.
Has anyone any experience their NLR being checked?
Regarding Vit D, my shielding emailed letter from Matt Hancock today states that I am entitled to apply for 4 months free vit D! I'm on 8mg Pred, tapering DSNS method. I've had PMR since April 2018. Should I take vit D?
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