Just something that came up while I was chatting briefly to my haematology nurse. I asked her if taking probiotics was a good idea for me, fully expecting her to say yes. However, it was a definite no, because my gut bacteria will not be the normal mixture. We didn't continue the conversation as she was putting a needle in my arm and then needed to get on with other things. However I found this interesting and wonder if the immunosuppressive effect of Ruxolitinib is to do with it changing the gut bacteria, which I understand plays a large part in the immune system.
I thought others might find this interesting or be able to share more knowledge about it.
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Otterfield
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Hi Otterfield, this is very interesting, as I take 70ml Symprove daily have done now for about four years, it’s totally all natural ingredients and water based, as what with all the drugs I take I constantly had upset stomachs. I have alway suffered with IBS and Diverticulitis and it was a gastroenterologist who recommended this product to me saying it really helps with good gut bacteria, the one I take is mango and passion fruit flavour, you can get natural, anyway before use I spoke with my Haematologist about it and would it be alright to take, he said yes instantly to me taking it, even with Hydroxycarbamide he said it would not do any harm and I have never looked back, it certainly has improved my stomach problems and my bloods are all in the normal range, so much so they have put me down to every four months yeh!!I know that you take Ruxolitinib so not sure if it would be any good for you, I did once try kefir but it was not for me neither were probiotic tablets had to take too many to get any benefit.
Also just had my second monthly finger prick test for antibodies to covid and I still have which is good, so feel that just maybe Symprove is helping with my Immune system as well.
Good morning. I realise that yours is an old post of 2 years ago but nevertheless you’ve just put my mind at rest.
I also take symprove and I wasn’t too certain about the interaction with hydroxycarbamide. I also take kefir and make my own sauerkraut. If it’s good for your gut, how can it be bad!!
Hi Rolande, yes still good, no nasty flare ups for a few years now since taking Symprove, even bloods have been good, I do find that if I over do it with Kefir like you I have a bit of trouble the next day, but my attitude is better out than in not wanting to tempt providence but not even had any flare ups with my Diverticulitis which is good.
Thank god for Symprove I say, even after taking antibiotics it really does help keeping the old tummy in good condition.
Thanks for this but I’m very surprised. I think promoting good gut health will become increasingly mainstream over the next few years. I take daily probiotics so will now do a lot more research. A shame you did not have the time to quiz her more thoroughly. To be honest I’m not convinced that she is correct and hope Maz can comment?
I was quite surprised too but it makes sense if the immunosuppressive action is mainly in the gut. I shall continue to eat foods which generally promote good gut health but keep away from probiotic supplements. I will note it as something else to ask Prof Harrison about when I have another telephone consultation in September.
I don't think this would apply to ALL MPN patients though, as my weakened immune system is due to Ruxolitinib.
Hi Otterfield, My red blood cells and platelets are the only ones that have "gone wonky"; the other bloods look fine to me (and my GP) but my haematologist says that I am immunosuppressed. I am only on aspirin - no drugs that suppress the system. The question of probiotics hasn't arisen and I tend not to take any as I don't seem to have any problems. I asked my GP about an antibody test and she said she hadn't heard of it. I would have thought a test would be useful for those on Watch and Wait and others. Not trying to make any particular point - just airing my thoughts prior to the masks coming off.
I do not take pills - 1 tbsp of kraut = a whole bottle full of pills, and homemade kraut is much better for you than anything else.I make a huge coleslaw (of anything hanging around) no water, but 2 to 3 per cent salf (by weight) added. Let bubble for a few days on the counter and then into the fridge. It is that easy!!!
culturedfoodlife.com has many podcasts about this
There is much research going on about how eating this can help with covid as well - both reducing the risk of getting it, but if you do how cytone storms are minimised becasue of it.
I am not a doctor - but want to see how one does not have to have pills and if there are other protective measures one can take.
Hi Otterfield, , thanks for sharing that , was a bit surprised by it as escaped my radar and ive read alot over the years. Will try find out a bit more as both my wife and I use probiotics (and my doggy too) so would be good know more. My gut feeling (poor joke alert) is they can only help the tummy , certainly didn't crop up on the 2 occasions I was taking Ruxolitinib. Chris
Thanks for this. I have read alot about probiotics and the gut and formed the impression these might be helpful. I do have kefir from time to time and always bake sourdough- haven't done sourkraut yet. I'm on hydroxy. I too will check with haem at my next appointment.
I would be surprised if the nurse was correct, I suspect it might be the opposite for us taking drugs like Rux or HU which can upset the gut, I’ve been on Rux 4 years and probiotic for ever and everything I read or hear says they are good go us, if it was me I would probably continue with them until you hear what Clair Harrison has to say 😀
I am also very surprised to hear that advice. For those us of us with MPNs the microbiome is more important than ever since it is so integrally tied into inflammation and our ability to process nutrients properly. I would definitely get an opinion from a provider who has a better understanding of the treatment needs of patients with MPNs. Do bear in mind that MPNs are rare disorders and most hematology nurses (and doctors) have little experience with or knowledge about them. Defensive medicine is a real thing. Many providers would prefer to tell you not to take something that col really help you if they do not have the knowledge base to make a recommendation. That way they cannot be held responsible for you choosing to take something.
I would suggest getting a second opinion from a MPN Specialist, not a regular hematology nurse/doctor. If possible, a consultation with an Integrative or Functional medicine doctor would be great since they have the requisite expertise on the topic of probiotics. Here sre a couple of links.
FYI - I take a daily probiotic. I have now for years. It makes a difference. I have been on hydroxyurea, Pegasys and a host of other medications. The probiotics have never been a problem. I do have an Integrative Medicine consultant that I work with. She supports the use of probiotics to maintain gut health.
You are wise to check with your care team about the use of probiotics or any other complementary health supplement; however, i think it would also be wise to ask the right provider. You need someone with the requisite expertise to answer your question,
Thanks, I have my next phone consultation with Prof Harrison in September and I plan to ask her. In the meantime I will continue with healthy food including sourdough as I don't really like yeast made bread anyway! It was specifically probiotic supplements we were talking about so I'm assuming she didn't mean things like kefir/fermented foods.
sourdough bread is not just about not having baker's yeast in. The flour soaks in the liquid for a long time - and the soaking time is one of the very, very important things as well.
Hunter - you are so right. I have talked to both my doctor and my specialist about certain foods/supplements. BOTH have said they could not advise - they have no training in that area - but BOTH are happy for me to experiment.I was extremely happy for their honesty.
Talking of which - I did experiment with Kale chips - I overindulged because I loved the taste, and yes, my redi blood counts went way up. Seem happy enough without the over indulging tho!
That’s such a loaded question! My initial gut reaction was like yours, how can anything that has served our species so well be detrimental? But I guess, that may well be the difference…we no longer rely on history. Drugs are new-ish and with them comes new idiosyncrasies?
Our health system has specialised to such a point that very few of them interact with each other.
I often wonder how doctors can just dish out pills with no thought at all as to what a person eats.
Humans have been here for a long time - long before refrigeration, proccessed foods ..... we really need to get have to what our bodies were designed for to give them a fighting chance.
ps - I just read last night about just how long cancer has been with us - the 'wealthy, upper class' oldest Egyptian societies had it.
I started Ruxolitinib 2 months. At the time I was taking a probiotic 2 capsules daily, 2 garlic capsules and turmeric capsules. The pharmacist at Guy's Hospital told me to stop all of them as they interact with Ruxolitinib as well as all citrus fruits either as a fruit or in jams etc. Before adding any medication including antibiotics I have to check them out with Guy's. How long have you been on it? My platets haven't come down at all and I have lost 5k in weight.
I have been on Ruxolitinib since last August. The information sheet I received told me to avoid grapefruit and Seville oranges, but I haven't heard about other citrus fruits. My platelets have come down far too much and I have gained some weight, which is a good thing for me. I feel incredibly well at the moment but I know that can't go on forever with MF sadly. Hope you at least feel well on it?
I can’t imagine probiotics would be bad for you. I have taken them on and off over the years when I’ve had stomach issues. But it’s good that you checked to make sure and I’m wondering what other health professionals would say about it.
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