This follows other research that looks at neuroimaging and may be able to predict groups of people that a drug may not work in or conversely identify when it is more likely to work.
But this article is very interesting not least in quantifying how many people that do not get benefit from codeine but also the general principle it advocates at avoiding harm and improving efficacy. Not directly related to fibro but will feed in to our own care at some point.
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That Would be good wouldn’t it?In a similar vein, this article is saying that pain syndromes and also individuals including Fibro have different profiles of inflammatory mediators which require different approaches, hence certain medications working for some and not others.
That is less about the variances in how our fibro community differs amongst itself as opposed to its different profile with other pain conditions. And also the fibro conversation with neuroinflammation is still developing.
But it does highlight why NSAIDs are not a straightforward choice for people with fibro as opposed to RA for example.
It's already possible to order pharmacogenetic test kits in varying quality and prices (around 200€), which say they tell you which meds are best and worst etc. for you. Might be a modern form of pendulum dowsing of meds, but I was told by someone who was involved in the Human Genome Project that they do sort of work and did work for them...
they have been used in AIDs treatments for a while and elsewhere but this is more about it becoming mainstream within the NHS and those "popular" drugs that may have adverse or no effect. No effect in our condition is significant as it could be continuing for 6 months without positive change that they could predict,
But I like the article for the alignment with other changes that will change delivery and efficacy figures.
Delete this Des if you don't think appropriate. but very topical over here....
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Following reports of UK and Irish citizens dying after being prescribed Nolotil in Spain, agency says visitors should not take it as they cannot be monitored for adverse effects
Wow, wouldn't it be marvellous if we could do away with trying one drug only to find it doesn't work and then another with the same outcome and so on until we finally find one that does work. Seems the cost of these tests far outweighs the money wasted on trial and error. Thanks for posting the link.
In short: Nolotil is highly used here in Germany: Bloods need to be checked for (rare but deadly) agranulocytosis as soon as flu-like symptoms, even temperature, occur. In Spain it's being systematically overdosed, which needs to be changed.
Sort of interested I got big-eyed seeing that's metamizole / di-pyrone.Invented here in Germany 100 years ago and still highly used as 'Novalgin'.
My first/only rheum.-prescription for fibromyalgia...! (But my skin reacted strongly to it.)
I've always wondered why I'm the only one who got this...
The main problem is that it "very rarely" causes agranulocytosis - deadly if not recognized.
The numbers vary greatly according to studies, as is usual with very rare occurrences.
Agranulocytosis and neutropenia are caused by a very large number of meds, e.g. in the UK and elsewhere people need to be nationally registered for monitoring if they are taking clozapine for schizophrenia etc.
Workarounds in Germany for still highly using it:
a) Don't take with methotrexate (esp. autoimmune diseases),
b) check bloods if there is any suspicion and especially
c) stop intake immediately with flu-like symptoms, even just temperature/light fever,
d) educate & inform GPs and patients about this.
Several Spanish articles from 2021 also suggest: It's been systematically overdosed there (2g per 8h) and that desperately needs to be changed, e.g. elsevier.es/en-revista-ciru...
I live in the Canary Islands which are true holiday destinations where tourism is our main industry. Too many people don't have proper medical insurance and see a private Doctor who is unaware of this drug's effect on Northern Europeans. . Good enough for the natives.
I added this while on subject of DNA and how different regions of the world can tolerate different drugs
Well, I think the research above shows that Spaniards don't tolerate this med better, same as we in Germany don't, but still use it all the time. It's just the risk is being assessed differently, and bad luck.
It fits to the DNA topic as that is also about people being individually different and pharmacogenetic testing can sort out for the individual person what they tolerate how.
Of course it is also the case that there are a few meds that certain peoples don't tolerate well, and that of course can also be part of the pharmacogenetic testing. But that isn't restricted to peoples. I think I'm right in saying that there is much more variance in med tolerance in individuals than in peoples, same as between fibromites world-wide.
This is good, I think we some good times ahead. There seems to be hope on the horizon😊
I think Emmanuelle Charpentier and Jennifer Doudna the first two women to share the 2020 chemistry prize, which honours their work on the technology of genome editing is looking promising for future health too. "Beautiful minds hey!"
Their discovery, known as Crispr-Cas9 "genetic scissors", is a way of making specific and precise changes to the DNA contained in living cells. This may save us the issue of trying numberous drugs in the hope of improvement, with a possible ability to make direct changes to the specific DNA causing the issues in our bodies.
this is the article I referenced above about neuroimaging and drug development
"Prediction of Differential Pharmacologic Response in Chronic Pain Using Functional Neuroimaging Biomarkers and a Support Vector Machine Algorithm: An Exploratory Study"
Hi Desquinn, here in the US they have this DNA test out for psychiatric drugs such as to which group works best for depression. I had that test done a few years ago. Also my family doctor ran some DNA 🧬 test that showed my body doesn’t break down vitamin E so it can cross the brain blood 🩸barrier. It will be nice to see this test spread out farther across a broader spectrum of drugs. Thank you for sharing this article. I don’t know if this test done in infants would create as clear of a picture as if done at age 50 or when ever health starts to head south. I think over time our DNA defects will materialize and that at infancy it would show more normal DNA 🧬 because nurture effects our DNA and weakens or breaks parts of our DNA. The nature will show potential as indents what could go wrong. The whole nurture vs nature debate thing. I am an identical twin which means we have the same DNA but we have totally different health problems. Some are the same but she doesn’t have fibromyalgia and CFS and I didn’t need open heart surgery to replace a bicuspid aortic valve. She has one good eye and I have 2 bad eyes so she can get by with having to wear glasses but I can’t see without them. I could go on but that is just a few differences of how our DNA went their own separate direction.
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Daily Mail article -12th November 2022
