I was having a chat with some friends the other day and someone mentioned how they have felt much better after taking probiotics for a few months. I thought I'd do some investigating not because I have any gut problems but just out of interest.
I was somewhat surprised to read that there was quite a lot of information saying that it was inadvisable for anyone who is immune suppressed because of steroid therapy to be taking probiotics at the same time because of the possibility of certain infections. It was pointed out that such infections were rare but that anyone who has been on steroid therapy to wait until their immune system had "recovered" before taking probiotics.
I wonder if anybody else has come across this information before and how it might relate to those of us who have been on long term prednisolone therapy.
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Mack100
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By probiotics do you mean foods like yoghurt or fermented cheeses or vegetables? All I've ever heard is some people can't take them because of histamine sensitivity. I know nothing about probiotics in pill form, always get mine through food.
In fact calcium supplements are supposed to be absorbed better if you have a little yoghurt at the same time.
That's interesting about the yogurt helping the calcium absorb better as I have always taken my calcium supplement prescribed without food. I may now start having a little yogurt at the same time. I am one of the people that started looking after my gut I thought, by making and eating sauerkraut, which i loved. I came out in a rash and was told it was a histamine reaction, something to do with being on methotrexate If I remember rightly.
Since you replied i have also looked and can't find the connection between high histamine and methotrexate. I have a feeling that I could have made a mistake. I take mitazpine and there can be a histamine intolerance if on some antidepressants. Apologies
I only know about the possibility of a histamine reaction from when I mentioned the importance of Vitamin K2 (not K1) in keeping bones and teeth healthy, and so many of the foods which contain it are fermented so the person said they couldn't actually eat them because of the histamine. We human beings are very complicated and it's definitely not one size fits all!
Oh dear. I take Optibac every day - I thought it was a good idea take it to help keep the gut microbiome healthy. I would be most interested to know if research says otherwise and I should stop taking it. 🤔
To be honest, today I am feeling a bit desperate - am in a lot of pain even having gone from 4.5 mg to 10 mg - and if research says my Optibac is having a negative effect then I will stop it. After 7 years of PMR I am willing to try anything to get this blasted illness to go into remission.
😞 sorry to hear that. We have to do what works for us individually. I am on 5 mg after 8 years. This is the third time I have got down to this and lower (4mg) but I have it taken away and replaced with hydrocortisone then it all comes back. Back up to higher pred 🤷🏼♀️
So this time I have said I will use the two together to see what level of pred the pmr comes back at but have my adrenals supported at the same time as I reduce. All the best 🤗
HC doesn't "support" the adrenals, it is a replacement therapy. It is also a corticosteroid and enough of it will also inhibit the adrenals, It will only speed up the return of adrenal function when it is used alone because it is out of the body quicker than pred. If you take both pred and HC, it is the same as taking MORE pred and you will still have to reduce the dose over time. The reason you flared is that the same dose of HC that is supposed to be equivalent to the dose of pred that worked isn't as effective as an antiinflammatory. In adrenal insufficiency, pred is also used as replacement therapy since some patients don't tolerate HC well at all. You will be better to stick with just pred and taper in very small steps and slowly - 1/2mg every couple of months or slower.
Someone else was persuaded by her doctor to take both - the dose he gave her made her feel great as it was like going to about 50% more pred. He obviously didn't understand how steroids and adrenal function work!
Hi yes I worded it wrongly. I prefer how I feel on HC. So it’s my choice if I use both together. I would like to be on HC altogether and then reduce that but pmr comes back so I know it hasn’t gone.
Problem is when they take all pred away it has to go up higher to hit it all on the head, then I have to go through that horrible 6-5 adrenal indeficiency world. Have tried all reductions. Don’t want to go up higher again. Endocrinologist wants me to have another synacthen test on 5mg. Can’t see the point but feel he wants me to just be under the rhuemy if my adrenals look better than before 🤷🏼♀️
That's what Ilm saying - taking them together is pointless really and if the PMR is still active, then you need the amount of pred you need to manage it and you can't switch to HC without risking the symptoms reappearing. HC for getting adrenal function back in PMR only works once the PMR is at a really low activity.
Thank you. So it looks as if Optibac is not a good idea. I shall give mine to my husband. And there was me thinking I was doing my body good by taking them. 🙄
That made me laugh, thanks - I needed it today! 😂 Obviously, I just meant he can have it because he is healthy and doesn’t have a suppressed immune system. He he - we are having a right old giggle here! 🤣
Oh right - thank you. I currently take them daily. I just want to do all I can to get to remission. Have had enough now. But I know really that it will go when it wants to. 🤷🏻♀️
The picture isn’t clear clear with a definitive yes or no, as is often the case and marketing of course tries to make it look irrefutable . It depends on a lot of things, level of immunosuppression, personal susceptibility, and type of organism seem to play a part. Personally, they (capsules, kefir, yog etc) upset me after a few days, even dairy free, so my body says no. If you have the time this is quite a good discussion, covering research into various risks. If not, skip to the conclusion.
Well I have used a good probiotic every so often for some years and it hasn't done any harm.
I think part of the problem is that in some cases they perceive them as "boosting" the immune system - while pred is subduing it so the idea is they work against each other. It is now well known that the gut biome is an integral component in the good functioning of the immune system and others consider the use of probiotics as a means of REGULATING the immune system which is something we need as in autoimmune disorders the immune system is disordered or dysregulated.
I think it is better to take a really good product now and again than many of the cheaper varieties on a permanent basis. And of course a good supply of PREbiotics in the diet is just as important though I can't claim to be very good there!!!
I too have taken a really good probiotic for a few months then a rest for a similar time. Initially I took then to help a bloated feeling and this was so successful. I have never had any side effects so am happy to carry on and am now on just 2mg Pred. after almost two years.
I have been taking probiotics since 2008 after a long ICU stay. I have had a long term on Steroids and do not say I had any side effects at all?
As a Side note my sister and I read Mad Magazine and I ended up been called "Newman" and I am still called it by my old school mates to this day! (Lost my front teeth and had a homemade hair cut that matched Alfred E Newman)
I take probiotics for IBS and diverticular disease on the recommendation of a couple of specialists. Neither they nor a couple of other specialists I see nor my GP have ever said anything. Nor have I ever had any side effects.
I just did a little google search and found this. Possibly your clinician read it, or something similar, and assumed that the risks are much higher than they are. I don't think most people on low PMR doses, especially once they've tapered to a *really* low dose, are so immune suppressed that a probiotic on its own is likely to cause a problem. The article does say it's important in research studies to note the type of bacteria inviolved in the study so if a problem is noted in any of the subjects they know exactly what organism is involved.
I also second PMRpro's statement that prebiotics are important. (Which is why my daily salad veggies are as important as my daily yoghurt or kefir!) We need to feed the probiotics.
I'm trying to eat a gut friendly diet as promoted by Tim Spector from Zoe. As well as eating at least 30 plant based a week I eat yoghurt and kefir for breakfast every day and kimchi a few days a week - one advantage of kimchi is it has about 9 different plants in it! I haven't actually noticed any difference yet though . I've not been doing it very long, maybe a couple of months, so it's early days yet
Thanks! I bought kefir and kimchi thinking I was being very virtuous. Kefir is great first thing with my meds, but was struggling with the kimchi. Will try with cheese but maybe not crackers at the moment because trying to cut the carbs!
I buy it from an artisan business that makes small batches by hand. It’s 'naturally fermented, unpasteurised, additive and preservative free, raw and vegan' and tastes better to me than any other kimchi I’ve bought elsewhere. They occasionally put on workshops to learn how to make kimchi and kombucha and I’ve been swithering about going to one but haven’t summonsed up the energy just yet. They also make various krauts which are nice too.
I buy mine in Tesco! When I looked a couple of years ago they only had stuff in vinegar but now they have the proper fermented stuff made by Biona. I've made my own sauerkraut in the past but kimchi sounds to complicated. I haven't had enough energy for anything like that since PMR hit
I don't know if anywhere here in northern Italy sells it - not really a trend here! Ought to have a look in the organic shop in town. They make sauerkraut here - kimchi is maybe a bit exotic!
I am not sure, but I believe that Prednisone at the lower doses ( 20 mgs and under ) doesn't compromise the immunity all that much. Prednisone's main action is to convert to cortisol in the body, which dampens the inflammation that the underlying autoimmunity of PMR causes. There are other drugs such as methotrexate, leflunomide, et al that are sometimes prescribed for PMR that are definite immunosuppressants. Further to that I understand that there is research having been done that probiotics are helpful in reducing the autoimmune process. Here's a link to some of that, but there are others, so I would think that probiotics can be especially helpful for us that suffer from autoimmune diseases, and if takin in the food or yogurt form I wouldn't worry.
Just to add to this thread. Had to pick up antibiotics for hubby the other day and I mentioned to the pharmacist that I'd be giving him some probiotics in between the doses. She approved of this and emphasized leaving at least two hours between probiotic and antibiotic (I already knew this). It was nice to have encouragement to do this, and makes it easier with this recommendation to wake up hubby in time to eat some yoghurt and take some Cultured Coconut before he has to take the next dose of antibiotics. I know this doesn't relate directly to prednisone and probiotics, but relevant anyway to many who will read this thread.
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