compromised immune system

[piggylovesgolf]

Hi folks, back again.

Im a complete numpty at this but hubby (now down to 0.5 mg of pred) currently has some stomach issues----bad stomachs run in his family.

I had bought some Kefir which a friend of mine from the Far East swears by ,purely on health grounds, but have read on a "Kefir" website that you should not take this if you are on immunosuppressants The lady responded to my enquiry by saying that Kefir boosts the immune system whilst the immunosuppressants are trying to subdue it. Apparently its like driving a car with one foot on the accelerator and the other on the brake.

What I have never understood is that if your immune system is compromised shouldn't you be trying to boost it?

A very simple explanation would be appreciated as I am not medically trained.

Thanks everyone

[PMRpro Ambassador]

I look at it more as having a deranged immune system - semantics possibly but I think there is a difference. I also don't contribute to the thoughts that we shouldn't eat kefir because of pred and an immunosuppressive effect. Really - the amount of "good bacteria" in any food isn't going to have a dramatic effect, just encourage things to improve over time (don't tell them I said that, they'll get very upset)

I eat yoghurt and kefir and also occasionally take a probiotic - and it really doesn't make much difference to the PMR.

[piggylovesgolf in reply to PMRpro]

Thanks for that PMRpro. I've seen this before about immune systems and "boosting" and cannot understand why you shouldn't be "boosting" something that is clearly not working properly. I read somewhere, perhaps on here, that something would boost the immune system and that was undesirable as the pred was there to prevent this boost.Ah well. Guess I'll risk shovelling the Kefir down him after all then.

Thank you

[Karenjaninaz in reply to piggylovesgolf]

Be careful with the kefir; it may contain a lot of sugar and you want to avoid that with prednisone. It would contribute to weight gain.

[piggylovesgolf in reply to Karenjaninaz]

It does actually say on the package "no added sugar" and its made by Brooklea. No added sugar though doesnt mean NO sugar!!!! Im going to miss on this

[HeronNS in reply to piggylovesgolf]

If it's plain kefir with no additives there should be no problem. Flavoured kefir (also yoghurt) is flavoured because people like sweet things, so generally to be avoided. I learned to like plain kefir first of all by mixing it with some strawberry flavoured, because I found the strawberry too sweet, and quite quickly, and unintentionally, getting used to and preferring the plain, so that might be a way to introduce it to the reluctant. Apparently kefir contains many more strains of beneficial bacteria than yoghurt, so it really is a good idea to consume some. You don't need much. I have a small glass (4 or 5 oz?) every evening with my calcium supplement.

[piggylovesgolf in reply to HeronNS]

thanks Heron. These little bottles appear to be a small milky drink. Perhaps not the real thing as they dont look difficult to down

[HeronNS in reply to piggylovesgolf]

You mean the kefir you buy looks like a milky drink? There are different varieties. What I get (regular kefir made from milk, not Cultured Coconut) happens to look more like a creamy drink, but I'm sure there are varieties that aren't as thick. The important thing is that the drink contains live culture. The reason it's suggested one start off slowly is because the bacteria are going to colonise the gut, and too much of a good thing all at once can lead to an interesting reaction, probably uncomfortable 🤣. A gradual introduction is best.

[PMRpro Ambassador in reply to piggylovesgolf]

We get big bottles - and I find it a very pleasant drink

[PMRpro Ambassador in reply to piggylovesgolf]

Think yourself lucky if he accepts it!!! My husband wouldn't touch yoghurt - until he'd been given it in hospital not long before he died. Then he came home and was asking for it!! As well as other things he'd had to eat there or go without - that hospital was very Italian - ours is much more Germanic/Austrian in the way of food. As I said to him - he's missed out on so many delicious things over the years because he wasn't willing to try them!

[piggylovesgolf in reply to PMRpro]

He's a funny beggar anyway with food!!!! Told me the day we got married that I didnt need to bother cooking---just give him steak pudding and chips every day as he had little interest in food!!!!! I didnt of course!!!

[PMRpro Ambassador in reply to piggylovesgolf]

Oh yes - recognise that! He was quite good at trying things for the first 25 years or so but then had cancer and the chemo ruined his sense of taste so he rejected all the things we usually ate as a family and wanted the food he'd eaten at home with mummy - including steak pie and chips! It was fine in Scotland - we had a wonderful butcher there who made the pies! Living here in Italy was a bit harder - no ready-made anything, no bacon, had to train the local butcher because what would have substituted well here was all smoked and he decided he didn't like smoked bacon! He was a nightmare to feed. And the girls as teenagers were fussy too - but now one is vegan so eats all things vegetable and the other has improved no end as well! WHy couldn't they have done that for me????

[tangocharlie]

I tried kefir at one point (from Chuckling goat) but realised I can't tolerate it as it's high histamine, which might be a problem for people with bad stomachs. The idea behind things like kefir and kimchi etc is to build up the good bacteria in our guts, which emerging research from the likes of Prof Tim Spector and Dr Michael Mosley seems to be showing is key to good health. I don't think there is a direct link between kefir and the immune system. If you're going to try it, start slowly I was told, like maye half a teaspoon at first, not a full glass.

[piggylovesgolf in reply to tangocharlie]

Thanks for that. That was in fact the website that I looked on and did a live chat --as at the top of page it said not to take with immunosuppresants. I actually was shopping in Aldi yesterday and saw these little bottles of Kefir and remembered my friend mentioning them. My daughter keeps on about some guy (Japanese I think) who reckons a lot / most of our health stems from guts and she is on at me to give her Dad probiotics. He reckons he's on enough medicine/pills without adding more. I did know about the bad/good bacteria stuff as hubby was on anti biotics for a year (!!!!!!! and had every AB known to man I think)---connected with prostate issues which were causing continual UTI's--- and this sparked the thought process back then. Think I'll give the Kefir a miss then or try them myself!!!We've been through enough recently--I don't want to risk anything more.

Just got over covid !!!

[PMRpro Ambassador in reply to piggylovesgolf]

I;d try it on the occasional basis for him. If he was on abx for a year his gut biome will be very out of sorts ...

[tangocharlie in reply to piggylovesgolf]

Most supermarket kefir is useless as it's homogenised or pasteurised or whatever. it was the Chuckling goat people who told me to start with half a teaspoon, but I couldn't even tolerate that and gave it away to friends. I have done 2 microbiome tests via them though, and last year my gut health was 6/10 and this year is 8/10 so I'm doing something right. I still have PMR though so it isn't a miracle cure, but also can't be doing me any harm either. Maybe it's just slow progress and it is helping?

I'm basically concentrating on eating loads of vegetables, in terms of quantity and variety, especially anything fibrous and cruciferous like broccoli and cabbage, though you have to build up to that slowly. Michael Mosley's 'Clever guts' is a good book to start with if you haven't already read it. I kept a food and symptoms diary for a few years to work out what foods are good for me and what aren't, every body is different. That's how I discovered it was foods that were high histamine that made me ill.

I've just got over Covid too so am going to gently add probitoics back to my diet, I found some that work well for me that are low histamine. I can't tolerate lactobaccilus strains such as found in yoghurt and kefir.

[piggylovesgolf in reply to tangocharlie]

Yes my daughter ( a pain in the butt who knows everything!!!! but is very clever) condems most supermarket foods and she takes some sort of probiotic supplement which costs more than the average mortgage a month and reckons if it comes from the supermarket its crap!!! She is probably right and gives me research to back up her argument and whatever it is she takes seems to not be kind of "watered down"---my wording ----and is more powerful than something you would find on an Aldi shelf!!!I think she only takes it as a healthy option---nothing wrong with her.

[HeronNS in reply to piggylovesgolf]

I don't know if it's available in the UK (yet; it is in Canada and the US) but for the biggest punch of beneficial bacteria for the smallest consumption is Cultured Coconut, developed by someone who cannot tolerate dairy. One tablespoon a day, and even that amount is to be built up to over several days!

[piggylovesgolf in reply to HeronNS]

Thank you. I have a friend in florida (very thin very healthy male) who for a spell took coconut oil mixed I think with coffee every day. Apparently it tasted vile but gave him tons of energy. 😊. Everything's a trade off. I never attempted that one but have heard good reports about coconuts

[HeronNS in reply to piggylovesgolf]

The cultured coconut is a variety of kefir. It is not at all like an oil! But I see it's not available across the Pond yet so I guess a bit irrelevant after all! I have used coconut oil both for cooking and as a spread on bread and it has a faintly nutlike flavour, as one would expect. I imagine mixed with coffee it would be vile!

[PMRpro Ambassador in reply to tangocharlie]

The argument is the gut microbiome is part of the immune system in that it contributes a lot to how it works.

[tangocharlie in reply to PMRpro]

It seems to be key to everything, it's fascinating stuff. I tried adding in inulin recently, oh boy does it produce wind! Worse than fartichokes ...

[piggylovesgolf in reply to tangocharlie]

😂😂😂😂😂👍👍👍👍👍👍 definitely gonna give it a miss. Got enough with his current diarrhoea problems!!!

[tangocharlie in reply to piggylovesgolf]

keep a food and symptoms diary for a while, most useful thing I ever did, through that I found out I have problems with histamines. keep things simple, and only change one thing at a time

[PMRpro Ambassador in reply to tangocharlie]

You are supposed to introduce such stuff gradually

[tangocharlie in reply to PMRpro]

I thought I was doing but even half a Jerusalem artichoke or half teaspoon of inulin was too much for my delicate guts

[piggylovesgolf in reply to PMRpro]

I am grateful for all the responses Ive received here but my real question was if the immune system is compromised why should you avoid things that boost it? I dont understand that.It was the purchase of the Kefir and the websites comment that caused me to ask that question. As a totally untrained medical person it seemed to me that you would want to boost/up the immune system that has been damaged by an autoimmune disease

[PMRpro Ambassador in reply to piggylovesgolf]

They consider that it is an overactive immune system that causes the illness - and that if you "boost" it that would make it more active and worsen the disorder. That's why I said I don't consider it "overactive" but deranged, which isn't the same thing. Many immunosppressants are used to calm the immune system down so it does less damage. I'm not convinced that is the role of pred in PMR/GCA - it is being used for its anti-inflammatory effect more than its immunosuppressive effect.

Do you see what I'm getting at?

[piggylovesgolf in reply to PMRpro]

Ahhh-----By George She's Got It !!! Thats what I didnt understand. Many thanks for that. I imagined that the immune system wasn't working when it was compromised and therefore something that boosted it would be a good thing. Didn't realise it was kinda over active. I thought the immune system protected you. Got it. Many thanks P.Re your earlier comment re kids and food---oh how I get this!!! And have you noticed that when they eventually leave home they NEVER take all their stuff with them?

Apart from being the Bank of Parents we are also their storage units!!!!

[PMRpro Ambassador in reply to piggylovesgolf]

So then you downsize, ask them if they want their stuff and they say no. And a few years later ask where such and such is ... Mind you - OH made me chuck all sorts of things when we moved here and then whinged when he realised he could do with it ...

[piggylovesgolf in reply to PMRpro]

EXACTLY 😁😁😁😁

[PMRpro Ambassador in reply to piggylovesgolf]

They are all the same!!!!

[tangocharlie in reply to PMRpro]

I still have an old trunk in my dad's garage that has been there 30 years ...

[piggylovesgolf in reply to tangocharlie]

I think I would misplace it and claim loss of memory of enquiries are made 😊

[tangocharlie in reply to piggylovesgolf]

He probably has ...

[tangocharlie in reply to piggylovesgolf]

The immune system is supposed to protect you, and generally does a damn good job of seeing off invaders by producing an inflammatory response, but sometimes it becomes it becomes over-protective, goes trigger happy and sees threats where there aren't any. For example, a normal immune system would respond to a cut or bite by inflaming vessels to let the good cells through to fight it. i don't know if this is connected to PMR, it's just a very general description of what an auto-immune response is where the body ends up attacking itself. I like the words 'haywire' and PMRPro's 'deranged'

[piggylovesgolf in reply to tangocharlie]

I hadn't realised all this. I had it the other way round Thanks TC

[MamaBeagle in reply to piggylovesgolf]

But they do remember to take the bungee rope with them!!

[tangocharlie in reply to PMRpro]

So we're aiming to 'normalise' our immune system rather than 'boost' it? The way I see it and from books I've read our immune system has gone trigger happy, a bit like a very fatigued army shooting at anything that comes near it even if they're supposed to be on the same side.

I take articles about 'boosting your immune system' with a pinch of salt (no pun intended), they are rarely scientifically referenced, just written by a self-styled health guru, and often contradictory. For example some articles say tomatoes are great for you, others say they're poison to the body. i know my body doesn't like them. Ditto garlic and ginger.

But I'm intrigued by your recent post about current research into IL-6 and would like to know more. A you say, if TCZ works then maybe whatever that does is part of the answer to swtich off the dripping tap.

[PMRpro Ambassador in reply to tangocharlie]

Yes - normalise is a good word.

It very likely is - TCZ stops the production process that makes IL-6 and that stops the inflammation. It is only one of the 3 known mechanisms in GCA but probably the majority shareholder. They hope that stopping it for long enough will trigger the immune system to reset - as it does naturally for many patients - but it probably takes longer in some than others - and of course, it can happen spontaneously at some random time so can you be sure the TCZ was the reason or would it have happened then anyway? And NICE's restriction on time is possibly not helpful at all.

[tangocharlie in reply to PMRpro]

Thanks very much for the explanation. Wouldn't it be great if there was a natural option to stop the production of IL-6? I'm fascinated by the idea of fasting as a reset button but so far not been able to give it a proper try. I've read mixed reports of whether you should even try it or not whilst on steroids.

[Fifegran]

Have read all the above posts with great interest. All I can add is that I started taking the organic kefir 4 yrs ago so that I did not need a supplement to protect my stomach from the predisalone, and it has worked in that respect. I take it every morning on my porridge &berries instead of ordinary milk. Cannot say anything bad about Kefir!

[Cutes in reply to Fifegran]

Just to add that you can of course make your own kefir. A friend gave me a bit of 'culture', to which you just add a bit of milk, keep in a jar with a bit of kitchen paper and rubber band as a lid and then strain 24-48 hourly and drink the resulting milky liquid. I can't honestly say I like the taste, as its far sourer/more fermented tasting than the versions you buy in the supermarket etc, but it's drinkable if you add it to a little bit of fruit juice and down it quickly. I started off by taking 2 teaspoons a day and have now upped that to 2 desert spoons. I am on a low dose of methotrexate immuno -suppressants (5 mg x weekly) and fortnightly 'Imraldi' Anti TNF injections and am therefore not entirely sure I should be taking Kefir at all! However, as I have my 6 monthly check up with Rheumatology next month, I will ask the consultant about it then.

[HeronNS in reply to Cutes]

Kefir doesn't "boost" the immune system. Moreover I don't know why we are all so worried about our immune systems being too strong. As PMRpro pointed out in the first reply to this thread, and as I also have stated elsewhere, our immune systems are "deranged" and attacking our own tissues. Kefir does no more than help to balance the microbiome in our gut, which is beneficial, except perhaps for those few among us who have a problem with foods that have high histamine - all fermented foods I think.

You have been wise to introduce the food slowly, to allow your system to adjust.