Hello co-travellers,Has anyone had any experience with lion's mane supplement?
It is supposed to highly anti inflammatory and very good for treating auto immunity. (Not to mention all the brain boosting effect of removing brainfog, neuro protection etc)
But I also came across people who say that it might not be 100%safe if you are on immunesuppresants and could make symptoms worse.
The side effects some people have are truly nasty.
So, anyone with experience you can share? Is it worth trying?
Thanks
😘
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Ryka
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Honestly? I wouldn’t. The prescription drugs we are given have been thoroughly researched, tested on tens of thousands, have multi-billion pounds poured into their development before we swallow them so we and our doctors know what we’re getting and can be pretty certain that they are safe.
The problem with the supplements that pop up is they are not necessarily rigorously tested, don’t meet the strict criteria of our Medicines and Healthcare Regulatory Agency in the UK and therefore sometimes you’ve no idea what you’re taking especially if you buy them from the internet.
I’m not talking about Vit C, B6 etc. etc - those have been around for years and people are happy to take them as they’ve been tested on millions. I can’t find a good meta-analysis for Lion’s Mane and as you say, some people have experienced really nasty side effects. Your physicians rightly need to know if you’re taking supplements as they can easily adversely affect any prescribed drugs, not to mention the effect they may have on your liver over time.
I talk from the perspective of having been a senior sister and practice nurse over the past 40 years and have seen my fair share of problems caused by people unwittingly and in good faith taking supplements that have been promoted for all sorts of cures for something or other.
It is of course entirely up to you if you choose to take Lions Mane and there will be other posters who will have had no problems with it or other supplements but just be aware of possible problems. You certainly don’t need any more on top of having RA!
What a fabulous clear message you’ve posted, i really tried the natural route when all my drugs were stopped (a problem with the rheumatology dept) any way I tried as much natural remedies as I could as I had no drugs. Im glad to say after 18months they restarted my meds & apart from multivits, omega 3 & collagen (which the Rheumy knows I’m taking,) I’m very glad to be back on track with official meds prescribed. I think your post was well thought out & helpful to so many. Thank you 🙏🏻
Your advice is sensible, but I'm worried because I encourage my RA adult daughter to take Bare Biology pure Omega 3 capsules (one a day) and Pharma Nords Vit D3 capsules and of course she takes her daily 5mg folic acid (not on day of MTX). Plus I have asked her to find a good Probiotic yogurt (Yeo Valley 0%). Have I been correct in encouraging her to takes these???
😮 has she checked with her rheumy that it’s ok to take all these things you’re telling her to take? Not a good idea to take something just because your mum tells you to without checking first, whatever it is. I do hope she did check 😊
She has checked with Rheumy re Omega 3 Pure fish oils and he said he encourages Omega 3 with meds, if it is pure and no added ingredients, Bare Biology range is one of the most pure. She has to take Vit D3 800 dose per day because her Vit D is always low. Her reading was 17 when she first developed RA. Her reading is now approx 80 whilst taking her low dose daily. The folic acid is a must with MTX. So I believe checking the type of Vit you take and ingredients is the most important. You can buy cheaper brands, but look at ingredients. It is always best to check daily diet too.
There are supplements and then there are supplements. Please don’t worry yourself as none of what you’ve encouraged your daughter to take will harm her and they’ve all been around for years peddled by the so called health shops and ‘experts’. Any vitamin not required by the body will be excreted and yoghurt is good in whatever guise. The Folic acid is prescribed I guess and so not in question.
Whatever though, it’s best not to take supplements on top of prescribed drugs for the reasons we’ve all outlined in various posts but it’s entirely up to the individual, their own beliefs in what they think will help and what has helped them. Mine is only one point of view.
Thanks very much for your good advice. I am still trying to find out if it is ok to take a probiotic yogurt whilst on Biologic like Enbrel. No one really knows the answer? Would you happen to know where I can find out this info? about probiotics and Biologics?
Honestly, I really wouldn’t worry about probiotic yoghurts and biologics. Most, if not all, yoghurts have some strain of probiotic (after all they wouldn't be yoghurts without cultures) and millions of people eat them for their so-called health benefits. They are not classed as medicines and are consumed by millions without any health warnings. I have had all the biologics known to science and have eaten yoghurt without any problems whatsoever. Obviously, if you are in any doubt then don’t encourage your daughter to eat anything you’re not comfortable with but I think you’ll find, like most of these marketed foods for health, they make an awful lot of money out of you with very little active ingredients to show for it!
Never take any supplements….no matter how highly recommended they come . Not only might they not work…but they can really mess up whatever prescribed drugs you are taking.
So Rule Number one is check with your rheumy team before you try anything.
I really do understand what you are saying! When I tried to purchase a simple probiotic from Optibac (good manufacturer) they would not sell when I explained that my daughter is on Enbrel. But I have no idea if the yogurt probiotics are as strong. No one able to give an answer not even Rheumy??
That is true. My daughter does not make naturally Vit D easily, and Vit D is not in many foods, she has tried. She has been trying for 15 years since RA, but supplementing Vit D3 is only way her bloods have normal Vit D readings. I agree that healthy diet is best, but young people also want to live their lives. Us older people are wiser and have to watch our diets for Chol. and Sugar levels alone. After reaching 40 I think our bodies change, especially when Menopause creeps in!
how would you guarantee that the person who picked the mushroom, and processed the mushroom knew what they were doing? So many “natural” supplements are produced in unhygienic conditions and as they are not registered drugs there is no control about what is in the packet you buy.
All the words used in the marketing to make them sound official are generally meaningless as for example who is monitoring the claim that this is a “100% pure product” apart from the person making money off you?
I always urge people to be cautious with supplements. Many of them interact with the medications we take. I take Clopidogrel an anti platelet drug, and was advised by a rep for a company selling high strength turmeric it was safe, although things like warfarin weren’t. I ended up absolutely covered in bruises, and learned my lesson. I always research supplements carefully. The other issue is many of these supplements use the same enzyme to metabolise as the drugs we take. It can result in insufficient amounts of our meds getting into our system, or the opposite where you have toxic levels of your meds accumulating. The enzyme is P450 enzyme if you are interested in reading, it’s needed for around 40% of the meds we take.
You should certainly not take it without discussing with your specialists. The supplements are not tested to the same standard as the meds we take, which have millions thrown at them, and are rigorously tested to ensure they are safe. Many people wrongly assume because you can purchase over the counter, they are safe, which is definitively not the case.
No idea , but know always some supplement or other that produces wonder results. Like others have said RA team check my supplement intake in case it counter acts my usual meds.
I'm not anti supplements , but very careful where I source them due to the lack of quality, dosage, etc control. I've tried some of the usual suggestions, e.g. CBD oil, but they don't work in my case.
Also I'm an all things in balance & prefer if able to have a variety of healthy foods in my diet avoiding what I know sets of my flares, to try to ensure I get what I need.
I have been drinking mushroom coffee which contains lion's main, among others, for about 3 months.
I think there is something to it, I still have flares but it seems to give me energy where coffee didn't and my pain has decreased a little. When I've run out of the mushroom coffee and have a regular cup - I can tell a difference in my mood and energy. This is just my experience - to be fair, I've cut out dairy, and limiting gluten as well. (I'm on methotrexate 20mg/1 week) for reference. Good luck.
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