medscape.com/viewarticle/99...
Having just bought various forms of probiotic to support me while taking antibiotics, this article gave me pause for thought. Have only skim read, but it appears that we are one of the groups where there might be a contraindication.
When they talk about immunocompromised patients they don't really mean us - they mean patients with certain conditions or on certain medications. High dose steroids count - but most authorities consider that to be above 20mg pred. As rheumatological disorders, RA counts but it causes actual damage to the body tissues and immune system which PMR doesn't seem to in the same way. The medications tend to be a bit heavier duty too.
What about Actemra? I was under the weather every other week.
That is reassuring though. I was determined to try and avoid thrush. I have just completed a course of powerful antibiotics with listed side effects that make me quail, for diverticulitis . So I’ve spent quite a bit on reputable probiotics. I suppose they mean a chemo level of immunosuppressant This will impact on some of us currently.
I certainly haven't caught anything more in the last year than before. Like everything, it probably affects some more than others and that is why they check neutrophils, if they are down far enough you are in trouble.
I am glad that the drug suits you. You certainly deserved a break.
hi Jane. I have diverticulitis also.. and have had to use antibiotics but have also had success doing CLEAR liquids for 2 or 3 days, then liquids but nicer ones with ice cream haha. for 2 days then soft foods for another few days. And it has cleared up!! Hope you are fine and no thrush !
Thank you yogabonnie. I am in pain as we speak and getting scant help from the GP. The Gastroenterologist lost interest when he removed me from the “ cancer pathway”. I have never been prescribed antibiotics - my GP surgery treats them like a Leprechaun’s gold. I have been given a stool softener that I can apparently have every night indefinitely. One dose made food go straight through me.
Ice cream is oddly soothing. I will try your regime, it makes sense.
I have been wondering too whether probiotics are actually dangerous when one is very immunosuppressed, like having RA and Sjogren's, uveitis, etc. and injecting Tocilizumab weekly plus taking Hydroxychloroquine daily. You seem to imply this 'might' be the case. I have an Actimel drink every morning before having breakfast and have done so for a few years. Have done research but cannot find a definite answer. So to take or not to take probiotic.... indeed that is the question.
Indeed - I suppose the proof is in the eating: has it done you any harm?
As far as i can feel it does not seem to have done me any harm. I actually believe it has been helpful in helping my microbiome . I also have been taking PPIs for decades…. Not great… but the consultant gastroenterologist insists taking these are still a better alternative to getting oesophageal and stomach cancers. Catch 22 situation as always. So I think I will continue taking Actimel until I notice a difference if I ever do. I also eat Greek yogurt and other fermented foods. It’s always infuriating not being sure about things but that’s life. Hope you’re keeping well.
ha! my worries realized. I DO however think that taking probiotics such as acidophilus ...which has been used for YEARS... is a good thing when you are taking antibiotics. But taking pills or adding piles of pro and pre biotic I think must be worrisome. Our guts I think take pretty good care of themselves and many who eat fermented foods yogurt ..etc no doubt get enough. !
yes, I have Kefir and live yoghurt in the fridge but capsules too. X
I love kefir...a spoonful before a meal can settle the gut perhaps. But I am a bit wary of benecol because of the "no added sugars" when it lists sugars on the container....what does anyone else think...😉
Why wary? Benecol are being truthful - the description says -
No added sugar - contains naturally occurring sugars -
It doesn’t say NO sugar. …-
Just wary of sugar generally...especially if it is sacrine, like sweetners...maybe I'm too cautious.
Okay - thought you were wary of Benecol’s comments - but as PMRpro says many foods have natural sugars….so difficult to avoid all..
I make my own kefir and would miss not having my daily glass. It is a good natural source of vit K2 too
Kefir cured my IBS and GERD. I have been making it for years. It takes about 30 seconds a day to make it, so why not? Grocery store kefir is apparently made with powder so I'd not choose it.
That’s interesting, How do you make Kefir in 10 minutes? Is it that easy to make?
The kefir "grains" look like tiny cauliflowers. You can get them from a local kefir advocate (we love to make converts) or from Amazon or a health food store. Get two pint jars. Fill one with milk and put the grains into it. If the grains are new, it will take 3-4 days of putting the grains into new milk before you get a palatable drink. After that, it's so easy! When the kefir begins to separate (the liquid is called whey, very useful), you take out the grains with a plastic spoon and pop them (or it, sometimes just a single ball) into the second jar, which you have filled with milk. Put the kefir in the fridge, although you can drink it anytime. Stir, or mix in a banana for sweetness. The process is actaully simpler than I've made it sound!
Thank you. I don’t use cow milk but almond milk. I suppose it would work too.
Probably - you might find it harder and it won't be as thick but it is possible to make kefir with water. Bear in mind that the grains from kefir make with dairy milk will mean it isn't non-dairy kefir if that is a problem for you.
I've been taking 3 x probiotics daily for at least 10 years, maybe longer. I had a bout of diverticulitis and gastritis and to avoid taking omeprazole for a long period I decided on probiotics. It worked. When I was diagnosed with PMR I continued taking the probiotics and added goat's kefir. So far so good.
These posts are so encouraging and inspiring. Thanks all!
I was feeling a bit itchy a couple of months ago - getting worse and also had the overall body feeling you get when yeast getting upperhan. Started with the high level optibac capsules for a couple of months and now on the women specific ones. Have to say I haven't thought about itchiness for weeks so something has shifted...
I have recently been told Manuka Honey is good for boosting the immune system. Has anyone else heard that?
Yes I heard or read that too. Pred suppresses the immune system to deal with the inflammatory effects of PMR/GCA. Should we be seeking to build it up? At the tail end maybe?
I think the mistake often made is that it is sold as BOOSTING the the immune system whereas in fact it may well merely be regulating it and so making it work properly.
Suppose it depends on whether it is real Manuka or just labelled that! It is also said that there is far more on sale than can possibly be genuine.
Yikes, this get pretty complicated! The only time I had kefir was when I was in Russia 30+ years ago.....shame on me, I thought it was because they didn't have milk. I did get some Manuka(supposed to be genuine) dressing for when I was going through the 'skin ripping' period. You folks are so darned smart!!💞
Hi.....I have been taking probiotics and making my own kefir and sauerkraut for years now. When I got GCA 2 years ago I kept on taking them and eating them as I believe they are essential for good gut health. My mother developed Ulcerative Colitis after taking antibiotics, even her gastroenterologist admitted that the antibiotics would have been the cause. After 3 years of debilitating colitis she died. Since then I have researched and researched the use, pros and cons of Probiotics and for me ...well I wouldn't go a day without them, especially when taking antibiotics.
my gyn put me on probiotics due to body odor.
Vaccines for the immune compromised
Active Immune System 
Actemra, Methotrexate, and the immune system
