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Is there a horrible secret about dementia drugs?

Are drug companies hiding some terrible secret from us about their dementia drugs?  The signs aren’t good.  So far they’ve sponsored seven expensive trials on the drugs, and yet they’ve decided to publish just two of them.

Of the five that remain unpublished, two are so under wraps that nobody is revealing any information about the findings.  Even researchers from King’s College in London and the National Institute of Health in Rome were turned away when they requested the data.

The real worry is that the drugs may be killing the patient, but there’s no way of knowing for sure.  The researchers say that fatalities recorded in the studies they were allowed to see were so badly reported that it was impossible to tell.

What did come across very clearly was that the drugs – classified as cholinesterase inhibitors – are useless at preventing dementia, and may not even be much good for the patient who already has dementia or Alzheimer’s.

The drugs, donepezil (Aricept), rivastigmine (Exelon) and galantamine (Razadyne), are routinely given to older people who foolishly see their doctor because they have started to forget things.  The fact we forget where we left the car keys doesn’t qualify as a medical condition – at best it’s known as mild cognitive impairment – but doctors fear that these signs of getting older may be a precursor of dementia.  Equally, they may not be, but with a forgetful patient in front of him, the prescription-happy doctor may suggest one of the cholinesterase inhibitors.

We know the drugs won’t help him, but beyond that we don’t know the fate of the patient. And the manufacturer clearly doesn’t want to tell us.

For the full study, see PLoS Medicine, 2007; 4 (11): e338. doi:10.1371/journal.pmed.0040338

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Bill said:

This is the most stupid article I have seen on AD drugs. Mr Hubbard, you are making a disservice to AD patients and their family by writing  such article.

Doctors don't write prescriptions for those drugs just because you forgot where you left your keys. There is well define series of tests to tell if the patients have AD (ADAD-COG, MMSE, etc).

so get a life, the only secret , is your ignorance.

December 14, 2007 13:36
 

Windy said:

I agree with Bill.  Before my mother's doctor prescribed Aricept, and after a MMSE, he had her go through a neuropsychometric exam, get blood tests and an MRI of her brain.  He scheduled a one month follow up to track her reaction to the new medicine.

As for "useless at preventing dementia" -- I have not read anywhere where these meds are claiming to "prevent" dementia.  

I don't disagree that we need to track what happens to people on drugs.  Nor do I disagree that some docs prescribe meds too readily, but this whole "Big secret. People are dying"  scare approach is unhealthy and uneducated.

December 14, 2007 15:42
 

Carol said:

Mr Hubbard do you know anyone anyone who is taking the medication or have you heard anything about how much the medication costs?  I work for an organisation that supports  people affected by dementia and my experience is that many people struggle to get a diagnosis  and so do not even get offered the option to try medication. your comment that people "foolishly see their doctor" is insulting to people who are affected by memory problems, even those with mild cognitive impairment.  dementia is not a normal consequence of aging, it is a result of physical changes in the brain. I agree with Windy that I have not heard about these meds "preventing dementia" and I agree with Bill that this article shows that you do not fully understand the issues of dementia

December 16, 2007 21:24
 

Arthur said:

I feel that Bill et al, seem to be missing the main point about the report - just why are the findings of research being suppressed? Being from a University lecturing background I know from practical experience just how results are "massaged" to fit in with the aims of the funding body.

In any case, just what do these drugs actually do? What are their side effects and most importantly, do they improve the quality of the patient's life. (Or do they just make the carer's lives easier - maybe to the detriment of the patient).

In reality many drugs cause more problems than they claim to solve.

If only we could be told the truth, the whole truth and nothing but the truth, about drugs. But that is not the case as I know from personal experience.

December 18, 2007 12:35
 

Elaine A S said:

I  always recommend this site to people -- this is the first time i have had to disagree though. My father had CBD and Lewey body dementia. He was a bright well educated man and  sadly for many months -if not years, he got no help as he was still "normal". Finally he began to fall a lot and  it was finally necessary for him to go into a locked hospital area --where he cared for the other patients and chatted to and encouraged the student nurses and the specialists all came and sat on his bed and chatted. He began to not recognize his wife and his memories put him differing time spaces. He then could no longer walk around and was confined to bed. Until... they gave him galantine and another extract of snowdrop  drug as well as the Ginko biloba we had found to be helpful. The combination of daffodil and snowdrop extracts worked a miracle and he was soon back on his feet and conversing well. When they took him off  higher doses of the the drugs   he returned to a sad state where conversation and movement  was not there. He was put back on to them and he came back to us once more. True we live in an age where pills are given too often -- but where they can make a difference  to someone like this and give them their dignity back and take away the frustrations -- even for  a while-- do not make blanket statements. I have the highest regard for this site -- keep up the good work -- but make sure it is not harmful when there is  justification the other way. The heartbreak of these diseases are bad enough to contend with -- and of course  these drugs are detrimental in some ways -- but one has to trade off some times.

December 18, 2007 14:04
 

Richard Lindley said:

Dear Bryan,

Thank you for linking to the paper!

In this case I agree with you that the drug companies should not be allowed to supress the results of their studies.

You then spoil a good blog with the silly comments about doctors prescribing such drugs because people are becoming forgetful, and about the drugs preventing dementia.

As others have pointed out, there are in fact strict criteria for the presecription of such drugs.

See http://www.nice.org.uk/guidance/index.jsp?action=article&r=true&o=32134 for the NICE guideines.

Remember, research first, blog later

December 18, 2007 14:14
 

R.Cox said:

Having recently seen my elederly aunt die from 5 yrs of severe dementia it is clear that these drugs, at least from my perspective, have very little value and actually exacerbate the condition as well as causing further iatrogenic distress.

Many of these drugs are given simultaneously without any regard for possible adverse reactions and patients seem poorly montitored.  As a family we eventually 'sacked' the consultant psychiatrist in charge of our aunts care which led her to being placed in a different but wholly more acceptable NHS facility which reduced her drugs carefully so that for the last 18 months or so of her life meant that she was taking very few indeed (and the specific dementia drugs and anti-psychotics were removed entirely).  Consequently, though dementia is not a nice way to end ones life, at least she was spared the terrible side effects that had been the case whilst on the various 'chemical' coshes that were handed out willy-nilly initially.  

I recently viewed the excellent Panorama programme regarding this issue and it reflected very well the concerns we had about geriatric care for our aunt, whilst not being in the same geographical location (consequently it would seem that this is indeed widespread).  I was heartened to see that there are some facilites which attempt to cope with the needs of the elderly dementia patient without recourse to these dangerous and (probably largely) useless drugs.

Clearly for those who have a diagnosis of some sort of dementia ans should wish to have the opportunity to try any of them to see if they are worthwhile, then this should be an option. At present though it seems that scripts for these drugs are the 'default option' for psychiatrists in thrall to the ever present attentions of Big Pharma.

December 18, 2007 16:56
 

Harradine said:

A recent judicial review ruled that cholinesterase inhibitors bring significant clinical benefit in the early as well as moderately advanced stages of dementia.

Unless of course, the suggestion is that the UK High Court is also inherently biased towards the pharmaceutical industry and distorts evidence to promote misuse of drugs.  

So the conspiracy spreads deeper..  

December 18, 2007 17:25
 

Mr M H Viggers said:

I think that you are all missing the point. All synthetically manufactured compounds[drugs], have many side effects ,some quite dangerous, and the cholinesterase inhibiters are no different. The answer to this problem is of course to use the original compounds used in the trials in the 1990's that was effective, and vitually without any side effects, and consisted of Galantamine Hydrobromide ,with 200mg Choline Bitartrate and 100mg Pantothenic Acid [vitamin B5]. The Galantamine Hydrobromide is described as an enhancing Plytonutrient [Leuconjum Aestivum]extract root,made from naturaly occuring plants, ie Daffodils and lilies. This product can be obtained from many outlets on the internet.

Note: I have given this natural herbal remedy to my wife as part of an ongoing treatment using only natural products for 10 years.

December 18, 2007 23:58
 

Harradine said:

All synthetic drugs have side effects as do many naturally occuring drugs.  Many natural occuring drugs are lethal posions, whether they come from plants, funghi (mushrooms), reptiles, fish, insects, bacteria.

Other naturally occuring drugs are medicines.  Salicates (aspriin), opiates (morphine), cardiac medicines (foxgloves), atropine, valeric acid, etc. These are medicines that the drug industry uses which have come directly from natural sources. Saying that something is natural is not a bye word for saying it is safe.  

Other chemicals, such as ethidium bromide (smoking), organic cholides (plastics), pesticides, food additives, alcohol, etc are known toxins that are hard to avoid, but do us real harm.

Medicines are somewhere in between.  Some are safe, some are toxic.  Some prevent us from having 10 epileptic seizures each day, others from getting pregnant.  We choose to use them, yet often have no choice if we want to have a life (insulin, HIV therapy, antiepileptics).

Cholinesterase inhibitors prevent the breakdown of acetylcholine, a major neutoransmitter.  This acts in the brain when we focus our attention, whether it be on something we are looking at, listening to or thinking about.  When we focus our attention, we need acetylcholine.

These drugs give us more.  So when our concentration is failing, the boost it.  This translates into better attention grasp of the immediate surroundings and memory.  

But they do not halt the prgress of the brain degeneration that is the cause of the disease.  The brain is not well enough understood for that.  We can't stop it from dying yet, or repair it.  Hence why people in wheel chairs with severed spines cannot walk- when the damage the CNS is often cannot be repaired.

The drugs help.  Maybe for some people they experience side effects that mean its just not worth it.  Maybe in others they provide months or more of lucid time.  One can try.  But if someone is left on a prescription that is not right for them, that is wrong.  Families should have the courage to speak up when they see negative changes in their loved ones because they know them best.  Doctors should listen.

The oringial article here is typically about stirring up more general fear of medicine per se.  Real health issues run much deeper that partisan one sided-ness. But evidence is always needed.

December 19, 2007 00:38
 

Harradine said:

Often we do use medicines when we really do not need them.  In fact, we use drugs of all kinds when we don't need them.

Benzodiazepines (valium), opiates, amphetmines (rialin):  These were once all medicines, and some still very much are.  But no one could argue that these are not terrible scourges on our society.  Addiction, lives destroyed.  Pharmacolgy can do real harm and did so long before we studied it and it became a science.

But that is not the science of pharmacolgy's fault.  That is pharmacolgies fault!  Nature gave us much worse things.  Instead of benzodiazepines, we relied on alcohol-( a very dangerous yet completely naturally ocurring drug) and unfortunately many still do;  or cocaine (an ampethmine around since the Incas, a leaf).

But some chemicals can be used to our advantage,  because we have found some that do.  Only some.  Very few.  We will only find them by research.  They can come from nature if we a lucky or from anywhere else.  A molecule does not care where it was made, a tree or a lab.  But no lab can compete with the totally unique chemistry that is life.

Pharmacology is about understanding how all chemicals affect the body.  Drugs, our own hormones, toxins, nutrients, everything.  There's no reason why anyone interested in how the human body works wouldn't want to know about that.  

December 19, 2007 01:12
 

Dina Shira said:

The most outrageous thing about this situation is that many years ago a study was done on treating dementia and senility with hydration--giving water.  Within a relatively brief period of time 50% of the people recovered!  They explained that older people often avoid water because of bladder problems.  This dehydrates the body, including the brain.  It takes months to dehydrate as well as to re-hydrate.

Everyone should try it first.

December 27, 2007 22:45
 

Gina said:

My mother has been suffering from Dementia and Parkinsons for the past 4 years. She was mis-diagnosed for many years. She was finally properly diagnosed after yet another CT scan July 2007. Prior to the diagnosis she was able, even although with difficulty, to walk and carry out various light tasks around the house.

The doctor immediately perscribed so many drugs. I did not like the deterioration I was seeing in my mother, and I immediately went back to the doctor and he told me that; these drugs need their time to take effect, and under no circumstance should I stop them.

After a month on these drugs, she could no longer walk, certain parts of her body became parallized such has her urethera. Her hallucinations were overwhelming, her appetite supressed - she became a vegetable.

I immediately went back to the doctor and he told me to stop the medicines, that obviously they do not agree with my mother, and quickly perscribed something else to give her energy. It obviously did not work, because the damage had been done.

Her disease has progressed radically. What I have realised, however, is that I have no right to make a decision for her life. I must use every option allowable to me to sustain her life. If a feeding tube is needed,which will be soon, to hydrate her and nourish her, I will use it.

She does not want to die, as I believe that nobody wants to.

Every time she has an IV drip, she is more comfortable and feels better. Obviously, dehydrating is uncomfortable.

February 9, 2008 08:51
 

chary ns said:

Dear all,

Friends, we have found something interesting about demetia drugs. Unfortunately thats a negative corner. Me as one of the author of this research article published in neurochemical research want you to share ure comments.

Briefly, we had investigated the kind of impact that these dementia drugs can have on DNA repair mechanisms in brain, the target tissue for most demetia drugs. Stunningly the three drugs we used had an inhibitory role on DNA pol Beta a major repair enzyme in brain (although, to various extents). And you guys know importance of DNA repair enzymes in a tissue like brain, where most cells are post mitotic.

you can reach the blog site of the journalist of Deccan chronicle( one of the leading news paper in India) Mr.Syed Akbar, where he wrote an article last month.  

http://syedakbarindia.blogspot.com/2008/01/dementia-drugs-can-damage-brain-dna.html

look forward to see you comments.

chary ns

February 10, 2008 15:21
 

chary ns said:

February 10, 2008 15:23

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