Hmmmmmmm? Interesting. Hopeful maybe.
I take a Mannatech Pro-biotic... anybody else into probiotics.
Yale study reveals gut bacteria can spread to oth... - PMRGCAuk
Yale study reveals gut bacteria can spread to other organs to trigger autoimmune disease
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Yep, make my own kombucha and drink it daily. Makes for good gut health, and replaces my daily diet softdrink!
I think some folks need to develop a taste for it...and shopping around the commercial brands help figure out which taste appeals to one.
My fav now is pomegranate and blueberry😋yum!
in reply to 1Purplecrow
I remember taking kombucha tea years and years ago...talking 20 plus? I had no benefit at all so stopped taking it after 18ths. I had a rash up the back of my legs which started when I had the tea and disappeared after stopping it. No idea if it did anything for me at all. I am reluctant to try another herbal treatment that costs anything and/or comes on the back of profiteering. You are doing great to make keffir.
Interesting article. This article takes about lupus and the liver. Can it translate to us? Or is it a different bacteria that's out of whack for us? My doctor is from Yale hospital. I wonder if he knows more...
in reply to TooSore
Very good questions!!!!! Couldn't hurt to ask what he knows...
PMRproAmbassador
The work they have done involves one particular bacterium and lupus - still very early days but I think it is promising.
When my PMR started it did so after an earlier allergy appeared - which turned out to be to something in the structure of wheat starch. The local gut guy was obviously way ahead of his time and said "leaky gut" - something that has been hotly disputed for years. Now. finally, it is joining the mainstream.
All raw fermented foods are good - but they have now found that foods that have been fermented at some point in the production (like wine and chocolate) are also valuable. Just saying...
in reply to PMRpro
Very cool!!!!!
'Food' for thought PMRpro..?! 
🤔
Yes. Copy that wine & chocolate thing!
Sadly just had Leflunomide added to my drug cocktail (scan last week showed inflammation still in temporal arteries 22 months after first confirmation) and told alcohol is totally band and so my daily glass of red has had to go!!!). Guess the waistline is going to suffer from more chocolate
It was mentioned to me a few weeks ago - and I declined for the moment, mainly as I can't face organising another entire summer around blood tests. I've lost enough from PMR in the last 14 years and while I doubt I'm an alcoholic the thought of no wine doesn't appeal living where I do! However - a friend in the Scottish group has just come off pred after 8 months on leflunomide, she says she felt it "kick in" - but hasn't answered the other questions I asked.
But that is very interesting - I've said that the assumption it is gone after a few months of high dose pred is totally misguided. If it is still there it can still flare up - there is a false sense of security being created...
in reply to Retailmonkey
Hmmmm? Did they say why exactly, the one glass of red wine has to go? What does the alcohol do exactly?
Retailmonkey in reply to
The worry is that it might affect the liver (as with Methotrexate which I also take) and I think it is just the total risk that becomes the problem. My consultant and pharmacist both said no alcohol but Arthritis UK says small amounts (4-8 units per week) are acceptable. I guess in my case it is the Methotrexate and Luflunomide combined that is the issue
Leflunomide and methotrexate are both processed by the liver and that is a common effect that may entail patients stopping the drugs. Alcohol is also processed in the liver. In both cases there is meant to be very tight monitoring of Liver function - and removal of unnecessary drugs. Which, let's face it, is all alcohol is.
Did he say alcohol causes the temporal artery inflammation?
No there was no implication that alcohol has any relevance to the artery inflammation. Alcohol can lead to liver problems as can Methotrexate and Luflunomide and the worry is that the three of them together put you at greater risk of liver disease. For that reason regular blood tests are taken whilst using the drugs to make sure they are not leading to liver problems and alcohol ruled out to help reduce the risk
So a combination - I can see the point. Best to leave alcohol alone.
My son has ankylosing spondylitis and if he gets a tummy bug he gets a flare of his joints. His specialist reckons one day they will find bits of bugs in joints that are causing problems - interesting
....but then on the other hand....middle of last year I started making and drinking Kefir after hearing Dr. Michael Moseley raving about the importance of a healthy gut biome, August started symptoms of PMR and October shingles!!! So I have been thinking did boosting my immune system gave it more power to attack itself??
in reply to angiek
Hmmmmm?
I wonder if you were feeling below par and that prompted you to try to build a healthy gut biome? That is, and PMR was gathering strength already, leaving you vulnerable to Shingles.
Well, yes, you are right of course, I was already feeling unwell- I would like to start taking the kefir again, but I also developed severe heartburn whilst using it, so am a bit hesitant on that score to.
I had a burst appendix in April 2017. My GP thinks the toxins from this have caused the autoimmune problem... my symptoms started in September and I was diagnosed late December. It feels like this is my explanation
in reply to
WoW!!!!
That is really interesting, thanks for posting.
Like angiek I have been taking kefir regularly (last two months) and, like her, just had shingles (but think due to being run down with a cough etc). Interesting; will keep going...
I had the trauma of bike/car accident (I was on the bike) and a week later stomach virus...and vomiting. could have been the cause...of the PMR
Thanks Melissa for an interesting and thought-provoking Post! 
So... the 64-Dollar Question: Is my traditional 'healthy' diet of Pork Pies, HOT Indian Curries, lots of Red wine and Pork Scratchings (often, consumed all at the same time) responsible for my Immune System / PMR induced plight..? (only joking - I love and usually stick to relatively healthy 'Mediterranean' Diet principles - honest!).
As PMRpro suggests, there might just be some mileage / validity in the (sic) 'Leaky Gut' theory, which is either endorsed or rubbished by opposing factions in terms of AI illness Causes and Effects. Mmmm..
Intuitively, I like and cautiously support the 'Leaky Gut' idea in terms of it being a possible contributor to AI and other illnesses. At the same time, I wonder how many other factors also contribute to, and are equally (or possibly greater?) causal influences in AI illness development, including any or all of: inherited Genetic Vulnerability (i.e. 'it runs in the family'), Age, Gender, Demographics (e.g. more prominent in people of Northern European descendancy?), Excessive Stress in context, Physical Trauma (i.e. illness / invasive surgery / injury), Viral or Bacterial infections, etcetera. Clearly, this is still very much uncharted and complex investigative territory for the medical researchers and, I'm sure, real conundrum for many.
Either way, it's good to stimulate discussion around this important topic and I'm sure it will run and run...
'Uncle' MB
I'm thinking that AI issues are a combination of the factors you mentioned- add one too many and it's the perfect storm. That last straw that brings on the illness.
Just to add my anecdote to the other anecdotes:
I've been disguistingly healthy my whole life until the PMR train came roaring at me Holloween 2016. By Nov 9 - the day after our last POTUS election, I was all but crippled. Thanks Donald!
Other than that, no out of the ordinary stress. (The week before I was digging a 50 foot x 100 foot new garden and carryng 50 pound bags of topsoil. I actually thought that was the problem, nothing else, until the aching started spreading instead of abating.) No illnesses (other than the normal run of childhood ilnesses). No conditions. No allergies. A couple of sprained/strained/wrenched ankles, wrists, knees back in my tennis/track/swimming/diving/gymnastics/tennis years. The usual UTIs in my 20s and 30s using The Pill and diaphram. Maybe one cold a year. Had the flu twice before vaccinations were commonly available. Pre-PMR, had one kidney stone in 2000 and one in 2011 precipitated by what was believed to be dehydration after a particularly hot summer and a case of food poisoning (determined by the examiing the type of stones once collected and whose technical name I can't remember). Had 2 cataracts removed - one in 2011 and one in 2012 (decades of fun in the sun before sunglaases were re rigeur for anyone not in Hollywood). Broke my arm at the age of 5 playng "figure skater" in the back yard.
That's it. Not much of a medical history for 61 years at time of onset.
I realize now that I was very lucky to have a GP who recognized that something strange was happening right away, and referred me to a rheumy who came up with the right diagnosis within weeks.
Someone suggested recently that my proximity to 9/11 and Ground Zero (my office was/is down the block) could have brought this on, but I doubt that after 15 years of no symptoms, this would all of a sudden appear from nowhere.
So, as usual, I don't fit the pattern so many others describe. Being the outlier has become something of a trademark over the years. No wonder I'm following suit in this, too.
Probiotic supplements have warnings on the label about use with long term steroid use. It potentially could cause overpopulation of a bacteria. I believe it’s possible with any product containing active bacterial culture.
I was diagnosed with ulcerative colitis a year prior to getting ?PMR and Raynauds. I got the UC into remission only to come down with something far worse. Once you have one autoimmune condition, the next one can be lurking just around the corner. I did take probiotics last year but after reading about the potential risk with prednisone, I am sticking to yogurt and kefir, which still have a risk.
in reply to Kath567
Good tip... I'll check it out thanks! I have taken probiotics for years, didn't think to check for interactions with steroids!!! : o
gtate1914 in reply to
How have you been doing while taking probiotics? In what form, yogurt, kefir or pills? I eat yogurt regularly, just starting to drink a little kefir, but not sure now if a good idea. Need to research.
are you still eating yogurt and kefir for the probiotics? I too have been on high steroids for about 3 1/2 months, having trouble tapering. Been eating yogurt all along but now am just starting to make my own kefir. I am a little unsure if I should pursue the kefir..... how are you faring?
in reply to gtate1914
Hi, I eat yogurt every day and take a probiotic pill daily as well.... I drink kefir occasionally, but not on a regular basis. I'm doing okay... tapering 5 mgs every 30 days; I'm down from 80 to 35. So far, so good.
gtate1914 in reply to
You seem to be doing fine with probiotics in pill form and occasional kefir then. I really would like to do the kefir, am starting out slow, it did seem to give a stomach ache for awhile this afternoon but feel fine now. On 55mg pred and hope to reduce to 50 next week.
My rheumy just about had a cow (pardon the pun) when I told her I was drinking raw milk (from a state certified dairy, grass fed jersey cows and very fresh). Raw milk is so much healthier than the "dead" milk in the stores. I did stop, but not sure I won't start again. It agrees with me just fine. I've started to drink kefir made from organic pasturized milk, love the stuff.
Well, GOODGRIEF you gave me a laugh! That was me wheelbarrowing huge shovels of sand to the beach, lifting big rocks into the seawall, bodybuilding, jogging, swimming, climbing mountains then BAM! PMR hit and I woke up one day unable to put on my bra, comb my hair or turn in bed. Sheesh! I tried to go for a walk while in Maine with some friends and started crying because I could barely lift my legs, oh boy. I was so confused and no doctor could figure it out! Kept trying all kinds of "cures" from Vitamin D to diet, to probiotics to Naprosyn, nothing worked. I typed up a three page list of symptoms and activities and was ready to head to New York City to see the real "Dr. House" to see if he could figure out what it was! Thankfully, the second rheumatologist I saw figured it all out and three years later I think it is now, I'm happy to be down to 6 mg pred and tapering slowly slowly down. For me being an art teacher of 500 plus little kiddos (elementary school) the stress along with lifting a way-too-heavy boat I suspect pushed me over the edge. I already had other immune diseases so yes, somehow the old body just said, "That's it! You've pushed me too far" ha ha.
I’m just ending phase 1 of a ‘gut reboot’ for the past 17 days I’ve been taking the most vile oil drops 😫 tomorrow I begin phase 2 with probiotics. So far no difference... I’m currently on 7mg due to begin tapering to 6mg next week. Very stiff and sore neck, shoulders and upper back in mornings but eases off as morning goes on. Early days still but tbh I’m not feeling hopeful 😢 I’m 50
I'd wait a bit - see what that shoulder/neck pain does. It might not be directly PMR - myofascial pain syndrome is a possible contributor. You are already down to a low dose, there is no hurry.
Thanks PMRpro 🤗
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