Probiotics - which ones and how many billions?!

[Gabriella28]

Hello again! This time I’m asking if any of you take probiotics. I was told by a friend it may be a good idea to take them when on drugs long term. I went to a health food shop for advice but they didn’t know about ITP or Revolade which they thought was an immunosuppressant.

1. Is it safe and advisable to take probiotics?

2. You can get dairy-free ones but how can we be sure what the source is - ie where all these bacteria come from?

I’m keen to try them as I do think taking the Revolade is causing my gut problems!

Look forward to hearing from you!

Thanks

[itplassne]

I have both ITP and collagenous colitis, and I found that Eltrombopag caused disastrous gastrointestinal problems for me after about two months. The haematologist said Eltrombopag is known for G-I problems...

[Gabriella28 in reply to itplassne]

That’s interesting I hadn’t heard that. Have you switched to an alternative drug ? Do you take probiotics?

[itplassne in reply to Gabriella28]

First I had a month off everything to recover! Then I started Romiplostim, which has been without any problems (so far) injecting myself at home, so I now only need fortnightly hospital visits to check the platelet levels. I hope you find something that works for you 🙂I haven't tried probiotics per se, but I'm vegetarian and eat low fat foods etc.

[Gabriella28 in reply to itplassne]

That’s really good and how easy was it to get used to injecting yourself i wonder

[itplassne]

I am fortunate to have an extremely supportive and friendly specialist nurse, who is also an excellent teacher of injection technique!The first time she did the injection for me, then on subsequent visits, I tackled it myself with her support and guidance all the way.

On the second or third try, she gave me a "dummy" kit (produced by the manufacturer specifically for this task) so I could "play" with the equipment at home, and become accustomed to handling the various bits and pieces. This helped immensely in increasing my confidence and diminishing my cackhandedness!

I now do my own injections without any problems, so there's no reason why you couldn't too 🙂

[Gabriella28 in reply to itplassne]

Inspiring! Well done😊

[Ailbhe]

Hi there, I had a relapse in my ITP in October 2016 and it was my first relapse since moving to the UK in 2010. I had to wait a number of months to be seen by haematology team. While I was waiting I started taking probiotics for a separate issue (recurrent UTIs) and my platelets started to increase by the time I was seen by haematology team they were in normal range. They have remained in normal range since. It could be complete coincidence anytime I try to stop the probiotics I get a UTI so I haven’t been able to test the theory.

The probiotics that were recommended to me were the Quest probiotics. I took one month course of their Mega 8 biotix and then moved to their platinum biotix high potency ones. I’ve been taking them since and don’t have any side effects.

Could just be placebo effect but seeing as you were asking about probiotics I said I would share my experience in case it’s helpful.

[Gabriella28 in reply to Ailbhe]

Thank you so much Ailbhe! It is far more valuable to get such an unbiased personal recommendation from a fellow ITP sufferer than to stare blankly at the vast range of products in the health food shops. I could have taken advice from the shopkeeper and pharmacist but as usual they can’t offer advice in the context of ITP. It is really useful to have a brand name and dose. I can’t imagine they’d have any negative side effects. I’m pleased to hear your platelets have gone up whether or not it’s related to taking probiotics. I sometimes think if you’re system feels happy, you’re happy and that has a positive effect on the platelet count. I’m very grateful to you and will get some this very day!!

[mfuller9220 in reply to Ailbhe]

Ailbhe, that was exactly my experience. I discovered this about 15 years ago. When I started taking my probiotics my platelets remained normal for 13 years. A couple of years ago I moved from Missouri to San Diego and the cost of the probiotics went up 25%. I thought it was ok to cut back since my platelets have been in the normal range for do long. After a year, my platelets suddenly started dropping 30,000 points a week until they were dangerously low. I started taking my probiotics again and the first week the jumped 60,000 points. Last week they were over 200. After that, I decided they weren’t too expensive to put in my budget. Initially, through experimentation, I found out that not all probiotics are the same. Freeze dried did not work for me. The most effective are live probiotics. I use RAW Garden of Life 100 billion probiotics that are kept in the refrigeration section. I take 6 to 10 of them a day. After taking these for the last 9 months, I got a colonoscopy and my colitis is gone, my IBS is gone and my diverticulitis is gone ( I still have diverticulosis but the infection is gone). And as a plus, my arthritis and my fibromyalgia has improved greatly. All of the are related to your immune system. Probiotics didn’t make my overactive immune system more active, it made it heathy and functional. My doctor knows that I am taking these and agrees that my bloodwork has improved tremendously and told me to keep it up.

[Gabriella28 in reply to mfuller9220]

Very interesting and I’m glad you’ve resolved so many health issues. You’re fortunate to have a doctor who takes so much interest in you.

[Bowiemolly]

Pro biotics are immune boosting, your immune system is in your gut and spleen. I used to take Kefir from Chuckling Goat.

There advisors said not to take it any more as you don't want to improve your immune system. Seek advice professional.

[Gabriella28 in reply to Bowiemolly]

Oh that’s something I hadn’t thought about. So the last thing you want to do is boost the immune system when it’s already in overdrive (the way my consultant explained mine to me)?

[Bowiemolly in reply to Gabriella28]

Yes thats right, if any thing you need to calm it down.

[Gabriella28 in reply to Bowiemolly]

Back to the drawing board! I wish the Zoe study that is already available to join in the US would come to the UK - is where they analyse your gut, blood fat and blood sugar responses. That way it should be possible to address problems of the gut through diet maybe.

[Bowiemolly]

I also are on Romiplostin and it's got little or no side effects for me. X

[itplassne]

The Zoe study is supposed to be coming to the UK fairly soon, though I think it's through an app for iPhones initially (with Android being worked on).You can register your interest in the Zoe food/gut study, and they'll inform you when it's going to start, if you follow the links on the Covid Symptom Survey app.

[Gabriella28]

Yes I have registered interest already. Hope it comes soon😊

[mfuller9220]

Gabriella, I have had ITP off an on for over25 years. I started taking RAWGarden of life Probiotics/100 billion. Just a note, the freeze dried don’t work as well as the fresh/refrigerated ones. I’m not really sure what the difference was, but it there was definite distinction in its effectiveness. I started out with 2 billion a day then went to 3 billion then went to 4 billion and on up to 1 trillion a day. I’ve been taking those for over 20 years. As long as I am faithful to continue doing it, my platelets have remained in the safe zone. Not only that, by taking a probiotics, my arthritis improved, my IBS went away, colitis and other digestive issues improved. 75% of your immune system starts in your gut. If you are not properly digesting nutrients in your gut, the rest of your body pays for it. I had severe arthritis in many of my joints. I was in pain every day. I only took them for the sake of my ITP, but within four months I noticed my blood tests were completely normal in every area. And my pain was almost completely gone. I definitely think probiotics are a benefit. I just had my last blood test yesterday and it came back perfect in every aspect. I don’t think that was a coincidence.