Probiotics - do they work?

[Yorksman]

Has anyone have experience of taking Probiotics? Do they work? Are any better than others and do they really benefit/improve digestion?

[PMRpro Ambassador]

As I said where you asked before - I like the VSL#3 despite the price and it was recommended by a GI consultant in the UK with an apology that he couldn't prescribe it. It made a big difference to the lady concerned.

[jinasc]

Hi - just to add that as PMRpro has told you about VSL-3 this is the long story.

I had an operation, which went slightly wrong - saw a Consultant and he told me that most of the problems I was having was because of the anti-biotics. Antibiotics are brilliant but the kill of the goodies as well as the baddies and it take time to replace the goodies. He told me about VSL-3 which contains 40 billion good guys in one packet. but apologised as he could not prescribe them on the NHS.

I talked to my pharmacist, whom had been made a friend when I had GCA, Lara had not heard of it - but made enquiries, called me and said if you can afford them - well worth it.

Go ahead and order some please. Yes, expensive but with three packets bingo. - So it was well worth the price. I always take them after I have prescribed an anti-biotic.

Now they are available on the net, you can read up on them and make your own decision and the price on the net is slightly lower than the chemists.............however I don't and will never buy any type of drug over the net. I trust the pharmacists not the net.

vsl3.co.uk/

PS: I always have a pro biotic yoghurt (Yeo Valley) each day helps to keep the good guys on top - but that is just my peculiar way of thinking - no scientific evidence.

[Yorksman in reply to jinasc]

Thanks, do you take the yoghurt instead of a PPI to protect against the Prednisolone? If so do you have the Pred and the yoghurt together and how much yoghurt do you have?

[jinasc in reply to Yorksman]

I cannot help you here. I never took any PPI's although I had GCA and was on high doses.

I just took the pred with Yeo Valley Organic or Pro-biotic (whichever was the cheapest in the supermarket). As it comes in big pots, I bought a small size yoghurt pot and added a teaspoonful of Manuka Honey( UMF 10 or over depending on the H&B offer).

I then went back to bed for an hour to give the pred time to dissolve (mine were enteric coated) and then when I started using mixed pred non-enteric & coated did not bother going back to bed.

I must confess I am a member of the awkward squad and read the paper which comes with your prescription. Two of the 'proles' have a side effect listed as aches and pains.

I reasoned that why did I want to take, what I call 'add-ons' or 'just in case'. Mind neither GP or Rheumy were happy, but I just said, I will take them if I ever need them.

As it turned out I never needed AA. Dexa scan showed 97% , then every two years and bones never moved.

I did agree eventually to take Adcal (but that is another story) and finally dropped the calcium and just took Vit D everyday and I still take Vit D everyday.

I do not think that anyone should follow what I did, my decisions were mine. We must make our own decisions it is your body and your illness.

One day I might get 'arundtuit' and finish my story and put it in the bio place - just never had the time.

Hope this helps. Me (GCA only for 5 years then remission coming up to 12 years).

[Yorksman in reply to jinasc]

Thanks, with you all the way here - I also read the patient information leaflet! I'll join your squad!

[EdithWales in reply to jinasc]

That’s really interesting. My recent UTI resulted in rip roaring thrush and I have just spent £17 on Canesten

Apparently the current treatment for cystitis is no longer anything penicillin, which I took as I had it, but 3 days Nitrofurantoin. You can get it on line but like you I prefer to check with the Pharmacist. I am on so many drugs. Himself who has never heard of it has been sent to speak to the Pharmacist and get it ordered. And to think I should be lying on the beach in Dubai 🥂

[jinasc in reply to EdithWales]

Next time when you get that first feeling of a UTI try this:

1 teaspoonful of Bi-carb in as little water as possible - drink as fast as possible (it is horrible) repeat after 2 hours.

Old wives tale, which I am, but used it for years and it nearly always stops it in its track.

BTW if you put 'Uses of Sodium Bicarbonate' in your search engine and be prepared to take two weeks to read up on it. Mind I did not understand around 90% of it.

[EdithWales in reply to jinasc]

yes . We are old enough to remember Angela Kilmartin and the U and I club. I have always done it but this time I didn’t think I should take a pot of white powder to Dubai so it got me without any treatment. It won’t happen again.

[jinasc in reply to EdithWales]

Next time put some in a clean posh powder box. 👍👍

[EdithWales in reply to jinasc]

Good idea. I will do that. Himself is still looking at the VSL says all the research he has read is about the effect on rats. I will just order it 🥂

[HalleysComet in reply to jinasc]

i was warned by my pharmacist that Sodium Bicarb is not recommended for those on blood pressure drugs.

[Bcol]

I have the PPI at least 30 mins before the Pred then have the Pred and yogurt together. Whole pot if it's an individual size one or about 3-4 tablespoons if it's from a big pot. Usually have a banana as well.

[Yorksman in reply to Bcol]

Thanks, I thought the yoghurt was instead of the PPI but see now it's your probiotic boost.

[Bcol in reply to Yorksman]

I think I'm the odd one and that most people do take it instead of the PPI. I've never had a problem with my Omeprazole whether taking it for my OA in the early days or with my PMR.

[PMRpro Ambassador in reply to Yorksman]

A lot of people take their pred together with yoghurt - and many of them don't take a PPI. I eat yoghurt quite a lot but not to take my pred and have never taken a PPI - I have taken famotidine when taking a course of NSAIDs together with pred as requested by my rheumy, not otherwise. I've been on pred for over 13 years - no stomach problems as far as I am aware.

[agingfeminist in reply to Yorksman]

I have been on doses of pred from 60mg down and took the tablets with half a small pot of yogurt. It is anecdotal but so far I am ok....but I haven't ever had stomach problems. I am only a case study of 1....so not a recommendation just a bit of info.

[Meggsy]

Pred for 4 1/2 years, taken with a banana and water at 4am - no problems. GP has never mentioned a PPI.

[MarksPoint]

After suffering from very painful IBS for 45 years...yes 45 !!! (I was given antibiotics as a child for a bone disease) I found an amazing gastroenterologist in Sydney who was affiliated with the 2 Perth doctors Barry Marshall and Robin Warren who won the Nobel Prize in 2005 for discovering the bacterium Helicobacter Pylori. My doc had researched the gut and its bacteria for 40 years and under him I had an amazing turnaround and have been IBS free for 8 years now. The whole treatment was to do with getting rid of the overabundant bad bacteia in the gastric tract and replacing it with good bacteria.

After this amazing 'treatment' I researched everything there was on gut bacteria and I am a bit of an encyclopedia on it - I say 'bit' because there are 100 trillion of them and that's a bit beyond even me !!! Anyway, since then I have made my own Kefir every day and if I have to take antibiotics I take probiotic tablets as well as the kefir. I believe the gut biome is the most important organ in our bodies, if it is out of sync in any way then there will be a price to pay. Even our brains rely on the gut to supply most of what it needs. I was so convinced that my gut bacteria was in amazing shape that I refused to take PPIs or H2blockers when I started 65mg prednisone 12 months ago. I am now down to 2mg and truly believe the Kefir has kept my gut in really good health and no diverticulitis or any negative side effects. PPIs and H2blockers disfigure the workings of our gut, to our detriment, by blocking all acid production which is absolutely essential for food digestion and, more importantly, vitamin and mineral absorption.

For anyone interested there is a great web site run by an American lady called Donna Schwenk - culturedfoodlife.com - this is where I learnt to make the Kefir, sauerkraut and kombucha. Hope this helps.

[sivas in reply to MarksPoint]

MarksPoint, I toally agree with you on the Probiotics and gut bacteria. I am on the same track as you but for a different disease - psoriasis.

[jinasc in reply to MarksPoint]

Thank you Mark for your most interesting post. I learned something today - all down to you.

[winfong in reply to MarksPoint]

Very popular topic on the IBS forum. Don't know if you'd qualify, of course.

[Morningdew62 in reply to MarksPoint]

is steroids could trigger diverticulitis or flare it up?

[Pr0jection]

I buy Pro 5 from Healthspan UK. I've taken 3 per day for about 9 years and, as a result, was able to ditch the omeprazole. I also take goat's kefir.

[Blearyeyed]

I was first given a PPI years ago when I was waiting for gallbladder surgery. I tapered it a month after surgery as I began using yoghurt with medications , and a little before meals as a gut settling dip with herbs or spices added to eat with veggies. and I wanted to see if the PPI was really still necessary. I haven't needed it since , even though my GP refuses to take it off my repeat prescription list and they end up in the bin.

I also take the same probiotic as others to improve my gut health in general because I have other conditions like IBS and gut dysmotility and GERD with recurrent Bacterial and Fungal Overgrowth. The flares in these conditions have improved with use of probiotics and yoghurt.

When I was on steroids I kept an open mind and tried continuing the probiotic live yoghurt and Manuka Honey combo with the intention of using a PPI again if I needed to. I never needed to go back on the PPI. I usually eat the yoghurt , and take the medication about ten minutes after . I take it with water and I don't have juice or vitamin C at the same time as medicines ( I choose a different time for those when I take my supplements).

One reminder I would give is that if you end up on a course of antibiotics or antifungals , don't forget to take the probiotic and yoghurt in the times between antibiotic doses. An antibiotic kills off all gut bacteria , not just the bad ones . I've find this sort of alternation of antibiotics and then topping up my good bacteria in-between prevents the loss of gutflora balance , and the increased problems with cramps and stomach acid ( and bowel related issues) that can happen when coping with an infection medication.

[Effectual]

I make my own kefir and yoghurt and have both every day.

[Morningdew62 in reply to Effectual]

could give more details on how to do own kefir and yoghurt, please.

[Effectual in reply to Morningdew62]

I have replied but it seems to have disappeared.

[DorsetLady PMRGCAuk volunteer in reply to Effectual]

Often happens -just write it again …

[Effectual in reply to DorsetLady]

will try but it took me over half an hour!

[DorsetLady PMRGCAuk volunteer in reply to Effectual]

I know very frustrating - if you’re writing a long reply might worth drafting it in word or notes (depending on what device you are using) and then pasting onto here….

[Sophiestree]

I am a tad obsessed with all things probiotic and have taken them for 25 years in varying degrees.

I always have vsl#3 in my fridge but don't take it regularly. It was recommended to me by my liver consultant at the beginning of my journey. We had talked about how I take turmeric and a probiotic daily. He approved of what I was doing and then told me about vsl#3 but said he couldn't prescribe it for me as NICE had removed it from the approved list due to cost - approximately £50 a box and it must be refrigerated. My chemist always has it.

I also buy Tims Greek Kefir Yoghurt. If I'm in a hurry and need to take my pred I just drop the pred in that to take it and pick up a banana as I'm walking out of the door.

I take my other meds with a small class of plain kefir, can't cope with making it, not a dairy fan at the best of times...

also kimchi and kombucha....

[jinasc in reply to Sophiestree]

Just to say it has come down in price.... it is currently just under £20.

[Sophiestree in reply to jinasc]

I think that might be for 10 sachets, my box is 30 sachets

[jinasc in reply to Sophiestree]

Never thought about that - my pharmacist just has the one size.

Ta muchly.

[Hiibilly]

Hi I have been taking pro-biotic yogurt since last summer recommended to me by my bother inlaw who is a pharmacist. He is a NHS pharmacist but this wasn't mentioned by any who treated me. I was diagnosed with PMR in 2020 just before the pandemic started. I had a hip replacement last July that became infected and had to have it all done again. I was on antibiotics for over 3 months and feeling dreadful. Pro-biotic yogurt just one a day, lots of pre-biotics just green veg or salad and I haven't felt so well for years. Lost 3.5 stone to date, off Pred and the skin condition I have struggled with for years is so much better (auto immune related) sadly my hair hasn't grown back but that would be a miracle. Hope this helps.

[calibriel]

I’ve recently replaced my usual plain yogurt (like jinasc, I like Yeo Valley, but can’t always get it) with kefir. I resisted keifir for a long time, despite a lot of advice to take it, even returned it very grumpily when it was delivered as a sub with my supermarket order, because I thought it would be acid (I like my yogurt on the mild side). How wrong I was! I think it’s delicious. I just have 2/3 spoonfuls with my morning muesli. No, I can’t tell you whether it’s done me any good - these things are so difficult to track - but it’s certainly not done me any harm, and the research seems pretty convincing (look at it on ZOE)

[YorkieShowBreed]

I have been taking a probiotic every day and I think they are necessary for Gut health. They certainly work for me.