While not related to CLL, this article regarding the findings by Adelaide University that "has shown St John’s Wort can produce the same adverse reactions as antidepressants – including dangerous increases in body temperature and blood pressure." is relevant to anyone taking herbal medicine/supplements:
'University of Adelaide pharmacology PhD student Claire Hoban said that St John’s Wort, “like all herbal medicines”, was a drug.
“Importantly, it is a drug that can cause serious side effects such as dangerous increases in body temperature and blood pressure,” she said.
“There is a common belief that because something is natural and can be purchased from a health food shop without a prescription, it’s safe.
“However, people need to start thinking of St John’s Wort, and other herbal medicines, as a drug and seek advice from a qualified healthcare practitioner to be sure they use it safely.'
If you are taking any substance for a biological effect on your body, then you need to treat it the same as drug prescribed by your doctor and disclose what you are taking to anyone treating you for any medical condition. You could be having side effects from your herbal medicine or it may interact dangerously with drugs/treatment your doctor/specialist is considering for you. It's not only herbal medicines that we need to be cautious with, sometimes certain foods can interfere with medication - grapefruit being a common offender.
Neil
Photo: Not St John's Wort, just frosted Jonquil flowers
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This article deals only one study showing St John's Wort reactions akin to anti-depressants (no surprise as similar outcomes). It does not say anything about other Herbal intakes. Careful not to generalise to all food intakes either. There's choices and outcomes.
While it is true that the article is specifically about St John's Wort, I'm only reinforcing the quote by the research student involved in the research study. If a natural remedy shows efficacy in treating a specific health condition, then it is likely doing so via the same pathway that a manufactured drug does for the same condition, and hence patients are likely to experience the same or similar side effects. If those side effects are lessened, that's most likely because the active ingredient is less concentrated. Sometimes drugs developed for a particular purpose end up being used for what was initially seen as a side effect of what the drug was initially developed to treat! Then another way of looking at that situation is that the primary purpose for which the drug was developed becomes a side effect which you may not want...
I guess the point I'm trying to make is that because our bodies re-use the same basic biochemical processes for different purposes, it becomes very difficult to have a pharmacological effect that doesn't have 'side effects'. For that reason, if you take any substance and expect it to actually change a biological process in your body (and why else would you take it?) then you need to be aware that other substances that you ingest may change how whatever you are taking performs, which in the simplest case could either negate or accentuate the pharmacological effect.
In the majority of cases, the effect is so mild that it may not even be noticed, but sometimes the effects can be hazardous to our health. We can't generalise one way or the other, but we'd be wise to keep it in the back of our minds that such effects can and do occur.
Again these generalisations are not useful. Biochemical reactions are specific both with the chemicals used and the recipients. Specific and repeated drug trials try to show the efficacy and applicability in various situations. Even after this many side effects are missed because of the complexity of the product.
I'd say that it's the complexity of a living organism and all the influences on that organism. Even the most complex drug product is pretty simple compared to the overwhelming complexity of a living body. I almost included the example of identical twins in my earlier reply to you to illustrate that. Even identical twins might to show different reactions to a drug depending on what other medications they are on, what they've eaten, any illnesses they've had/still have, and all the other external factors that can change their epigenome and the state of their mind and body when they take the drug, so that the same receptors on different cell types may be more or less receptive to the drug.
As the researcher said "There is a common belief that because something is natural and can be purchased from a health food shop without a prescription, it’s safe.
However, people need to start thinking of St John’s Wort, and other herbal medicines (my emphasis), as a drug and seek advice from a qualified healthcare practitioner to be sure they use it safely.
Given the huge amount of study required to understand medicines/remedies (herbal or otherwise) and their interactions we can't expect everyone to be an expert, so in this situation surely generalisations have their place to help us deal with that overwhelming complexity. In that case which is more useful, the generalisation that herbal remedies are safe or that they should be treated with caution?
I am not a cll patient (my husband is) but I do take St. John's wort during the winter BECAUSE it acts as an antidepressant. I believe herbs and supplements to be important tools for anyone. We do check with his doctors before using anything for my husband.
phenry60, I don't see anything misleading in what Neil has said. It's a useful general principle to be aware that herbs and supplements may affect our bodies in ways we don't expect, and we need to let our doctors know which we are taking (and preferably check with them, before we start). People undergoing treatment for CLL need to be specially cautious.
With that general principle in mind, we can then be more specific in investigating certain supplements that might be helpful, for certain people in certain situations (eg St Johns Wort, green tea, turmeric). But as Neil points out, we do need to bear in mind that some of these things may help some folk, but be harmful to others. Even identical twins may react differently to a drug.
I think Neil's point is that some people assume that because a herb or supplement is "natural", it is safe, and there is no need to talk to our doctors about it. That can be a dangerous presumption.
This has been very disappointing. I hoped someone had something positive to say outside pharmaceutics (about complementary/herbal medicine). Rather it appears to be a grouping together, thoughless protecting a foolish idea: ‘that generalisations are useful when in defence of somebody or an incorrect extrapolation’. Sorry, science says (like the children’s’ game) that we must look at specific events rigorously and methodically to find out the best quality of information. Tomatoes were first thought to be poison as they were in a dangerous family. It’s a truism that with increased vulnerability we are careful. Lucky for me I’d read 19 research papers by over 50 fully qualified doctors/PhDs /Biochemists working for universities and hospitals before I read these blurbs. Eighteen of those papers indicated that specific herbal and vitamin uses helped treat CLL with positive outcome and no side effects. One indicated that a specific vitamin’s use in prevention/ treatment might later reduce the efficacy of a mainstream CLL medication. I am glad that I, and five others I’m in contact with, are using complementary medicine. My symptoms are reduced to the point the consultant has no explanation. All the papers I’ve read are available through Google Scholar if you wish to find actual research rather than just worried speculations. Please do not contact me, I have tired from this conversation. It offers me no useful information. Best wishes to you in your search for health.
This has been very disappointing. I hoped someone had something positive to say outside pharmaceutics (about complementary/herbal medicine). Rather it appears to be a grouping together in protecting a foolish idea: ‘that generalisations are useful when in defence of somebody or an incorrect extrapolation’. Sorry, science says (like the children’s’ game) that we must look at specific events rigorously and methodically to find out the best quality of information. Tomatoes were first thought to be poison as they were in a dangerous family. It’s a truism that with increased vulnerability we are careful. Lucky for me I’d read 19 research papers by over 50 fully qualified doctors/PhDs /Biochemists working for universities and hospitals before I read these blurbs. Eighteen of those papers indicated that specific herbal and vitamin uses helped treat CLL with positive outcome and no side effects. One indicated that a specific vitamin’s use in prevention/ treatment might later reduce the efficacy of a mainstream CLL medication. I am glad that I, and five others I’m in contact with, are using complementary medicine. My symptoms are reduced to the point the consultant has no explanation. All the papers I’ve read are available through Google Scholar if you wish to find actual research rather than just worried speculations. Please do not contact me, I have tired from this conversation. It offers me no useful information. Best wishes to you in your search for health.
phenry60 complementary medicine is a part of modern medicine there is quite a bit on our website page, the pros and the cons cllsupport.org.uk/cll-sll/s...
Perha[ps if you were to share the specific studies you are researching we could share in your findings?
It is a little unfair that you release a torrent attacking others perspectives and then refuse to accept informed responses, choice is a personal matter and we cannot all agree. We each find a pathway that suits us.
The underlying message in this thread seems to stress the importance of keeping the healthcare team informed of what complementary therapy strategies people may use, this may minimize risk of adverse reactions.
we all wish to be proactive in aiding ourselves live with CLL, there are at least 2000 of us here and there is a lot of experience here in this group. perhaps if you were more specific of the areas of your CLL research others will join you?
Thanks for your post and questions phenry60 unfortunately this is a very generalist area because of the many possible interactions that can cause adverse reactions. you mention that "Biochemical reactions are specific both with the chemicals used and the recipients. This makes every thing very variable as humans don't always react in the same way to specific agents or combinations of agents.
With that in mind
A catch all policy of informing your doctors and discussing any supplements you use or are considering using is important to remove risk of unnecessary adverse reactions or contra indications with other treatments,
Chris points out one example that St. Johns Wort is contra indicated with many CLL treatments including Imbruvica (ibrutinib).. there are many more and perhaps even more we do not yet know about.
It is a sorry truth that only a very small % of adverse reactions are reported using the UK's yellow card reporting system. yellowcard.mhra.gov.uk/ that in Wales alone 500 beds are occupied per day by people hospitalized for adverse drug reactions but less than 500 reports are received in the same time frame?
I think what Neils post highlights is the importance that the healthcare team treating any medical condition are told of any complementary treatments being used
As the healthcare team can only warn of potential dangers or adverse interactions if they are aware of all treatments being used.
We should also be diligent in reporting any adverse reactions we experience.
I am new to this site but have been reading this blog for several months. This is my first reply.
Now where to begin!
I completely agree with your post regarding St John's wort...even the generalizations : ).
I was diagnosed with CLL about 1 year ago and am still W&W, seeingy oncologist/hematologist (I'm a resident of the US/ Minnesota ) every 3 months for bloods, etc. Naturally, I was upset about the diagnosis, but after having breast cancer 5 years ago and brain surgery (a benign tumor), then a severe brain bleed, I guess I was not surprised at another curve ball !
After the results of the Fish /DNA results came back I found that I also have a deletion of the #17 chromasome... Which is not a favorable sign (as you know).
My only symptom is fatigue and prior to my diagnosis, I chalked that up toy brain surgeries . I have always been very active and athletic but am fairly deconditioned at this point.
Sorry for this LONG note, but I wanted to introduce myself and knew it would be lengthy .
The best thing you can do in the future is to be seen by the CLL team at the Mayo Clinic in Rochester MN. You have a more aggressive marker and the team there specialises in cases like yours.
Once you are establish as a patient at the Mayo they will work with your local doctor, on an ongoing basis.
This should be your next move in CLL management...
Chris, my specialist plans to send me to Mayo as soon as I progress from the WW stage ... She wants me to get into a clinical trial, but claims that they won't take CLL patients in the WW stage....only in stages 3 or 4.
That's good Nancy... yes they usually wait until you need treatment, but a second opinion on your CLL situation at the moment at the Mayo, might be a good idea...
CLL experts often see things a bit different than doctors less experienced in CLL... they also have more extensive genetic testing etc., that will fine tune you treatment when it comes.
Thanks for introducing yourself Nancy in what wasn't a long note by any means. You've had some tough health battles so I'm sure you have plenty more to share. It's no wonder that you are fairly deconditioned and I know from personal experience that it can take a long time - even years, to rebuild your health after having some difficult health challenges overlaid with a chronic condition like CLL. All the best with getting back into condition and do make the most out of your convenient access to one of the top CLL monitoring and treatment centres in the world.
This Adelaide Uni study on the risk of adverse reactions from St John's Wort even gets an article in the PsychiatryAdvisor, but you heard it here first!:
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Increased side effects after 6-9 months on Venetoclax 
Side effects of Acalabrutanib
