Has anyone heard of enbrel and its use with alzheimers? I have been reading about some trails in the usa and some of the results are amazing. If this drug is working so well how come we have'nt heard about it here , or is it the money thing again. The drug is licensed to use in people with arthritis in usa and uk. The alzheimers sufferers who have been treated with the drug in the usa have had to pay $800 per injection that is given once a week. I think we ought to be looking into this treatment as it seems to have worked on patients in the latter stages of alzheimers, hope im not just clutching at straws here. marlene x
enbrel and alzheimer's
- Thread starter marlene
- Start date
The pronlem is that it will need extensive clinical trials to make sure that it is safe and effective. This means that it will need to be used on a much larger group of patients, for a longer period - there will need to be clear proof that it produces the desired results, for a reasonable period, and without undue risk.
It should also be remembered that even when a drug has proven safe for one useage, this does not mean that it is safe to use it in a completely different way. Hence, there will need to be approval to use it to treat dementia. As I understand it the drug is injected into the patient's spine.
The questions will be - is it effective? How effective? Does it work for most patients? If so for how long does the effect last? How often is the treatment needed? Is it safe to use the drug in this fashion for extended periods if it has to be used regularly?
It should be noted that Enbrel works by suppressing certain actions of the body's immune system - which is why it is used to treat conditions like rheumatoid arthritis and psoriasis (where the immune system attacks the body). But this also means that people using it can become more liable to infection - and dementia is a lot more common in the elderly, who already have weak immune systems and also tend to tolerate drugs less well.
There has also been considerable concern expressed in the medical community about irreposible reporting.
I have to say, the videos that are available appear to be quite heavily and selectively editted.
It should also be remembered that even when a drug has proven safe for one useage, this does not mean that it is safe to use it in a completely different way. Hence, there will need to be approval to use it to treat dementia. As I understand it the drug is injected into the patient's spine.
The questions will be - is it effective? How effective? Does it work for most patients? If so for how long does the effect last? How often is the treatment needed? Is it safe to use the drug in this fashion for extended periods if it has to be used regularly?
It should be noted that Enbrel works by suppressing certain actions of the body's immune system - which is why it is used to treat conditions like rheumatoid arthritis and psoriasis (where the immune system attacks the body). But this also means that people using it can become more liable to infection - and dementia is a lot more common in the elderly, who already have weak immune systems and also tend to tolerate drugs less well.
There has also been considerable concern expressed in the medical community about irreposible reporting.
I have to say, the videos that are available appear to be quite heavily and selectively editted.
Hi Marlene
Is your Mum still at home with the family? (Yes, I've been looking back at your posts from June
)
What meds is she on now?
Best wishes
Is your Mum still at home with the family? (Yes, I've been looking back at your posts from June
)What meds is she on now?
Best wishes
Hi marlene,
As far as I can tell (based on this press release: http://www.prweb.com/releases/etanercept/alzheimers/prweb1412984.htm)
The company who owns the patent, Amgen, has not announced any plans to conduct clinical trials, as the press release says:
"Amgen has yet to confirm its intention to begin even preliminary clinical study in this direction."
It also states that Amgen's patent will expire in 2012, so that means other companies will be able to produce the drug from that date and also carry out clinical studies to begin the process necessary for licensing in people with Alzheimer's.
Here is the Alzheimer's Society's take on the orginal research:
http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=244
So, it sounds like it is not likely to be licensed for the treatment of AZ in the near future (1-3 years???).
Take care,
Sandy
As far as I can tell (based on this press release: http://www.prweb.com/releases/etanercept/alzheimers/prweb1412984.htm)
The company who owns the patent, Amgen, has not announced any plans to conduct clinical trials, as the press release says:
"Amgen has yet to confirm its intention to begin even preliminary clinical study in this direction."
It also states that Amgen's patent will expire in 2012, so that means other companies will be able to produce the drug from that date and also carry out clinical studies to begin the process necessary for licensing in people with Alzheimer's.
Here is the Alzheimer's Society's take on the orginal research:
http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=244
So, it sounds like it is not likely to be licensed for the treatment of AZ in the near future (1-3 years???).
Take care,
Sandy
Hi
Yes my mum is still at home and at the moment doing very well. we have had some major set backs mainly due to the incompedence of the caring profession.My mum fell and broke her hip in march 2008. she had an operation to bolt it and came through that with flying colours,unfortunately the hospital did not persevere with my mum's rehab because she became aggressive and maybe frightenend of any attempt by the staff to get her walking.We asked the hospital if we could be there and assist with my mum's rehab but were turned down and ignored.Mum was then moved to a recovery hospital were she spent the next 9 weeks. In this time mum became unable to walk,feed herself and incontinent, bearing in mind that when she was admitted she was capable of all these things.As you can imagine we as a family were distraught and tried several times to get her discharged. We were told that due to my mum's deteriation that it would be better to place her in a home with mental health nursing. We were very upset about this and eventually after a lot of shouting on our part got them to discharge my mum home with a very good care package in place.I will not even talk about the time we had mum in respite in june 2008 just needless to say never again.
Sorry to go on and on needed to get that off my chest.
My mums meds now are 4 guitiapine, 1 aricept daily
She still has days when she can be quite aggressive and upset ,this happens mainly when the carers come and sort her out, we know that she is aware of whats happening and its her way of showing the indignity and embarresment she feels.
By the way my mum's carers are brilliant and we would'nt manage without them. marlene x
Yes my mum is still at home and at the moment doing very well. we have had some major set backs mainly due to the incompedence of the caring profession.My mum fell and broke her hip in march 2008. she had an operation to bolt it and came through that with flying colours,unfortunately the hospital did not persevere with my mum's rehab because she became aggressive and maybe frightenend of any attempt by the staff to get her walking.We asked the hospital if we could be there and assist with my mum's rehab but were turned down and ignored.Mum was then moved to a recovery hospital were she spent the next 9 weeks. In this time mum became unable to walk,feed herself and incontinent, bearing in mind that when she was admitted she was capable of all these things.As you can imagine we as a family were distraught and tried several times to get her discharged. We were told that due to my mum's deteriation that it would be better to place her in a home with mental health nursing. We were very upset about this and eventually after a lot of shouting on our part got them to discharge my mum home with a very good care package in place.I will not even talk about the time we had mum in respite in june 2008 just needless to say never again.
Sorry to go on and on needed to get that off my chest.
My mums meds now are 4 guitiapine, 1 aricept daily
She still has days when she can be quite aggressive and upset ,this happens mainly when the carers come and sort her out, we know that she is aware of whats happening and its her way of showing the indignity and embarresment she feels.
By the way my mum's carers are brilliant and we would'nt manage without them. marlene x
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What's to lose
Ok so I am by no means an expert on Alzheimer's or drugs but from what I've seen about Enbrel, it looks to me like the sufferers it's been used on have made a comeback from this debilitating illness. I was contacted by a lady who saw a video I had posted on the internet of my mum and she told me about her mum and how she was before and after using Enbrel.
Marlene is actually my mum, my sister uses her name as a user name, it her pseudonym...and I know my mum and the ingidnity this illness causes her, not from the carers but because even though my mum is as ill as she is, like my sister mentioned before...bedbound etc, she knows that the carers and even me should not have to do the things we do for her, changing her pad etc....she's only 70 after all. After the carers have changed my mum's pad, she sits and cries or sometimes swears at me, not to let them come back because it's not right and when I change her, she sits and cries, saying I shouldn't have to be doing this for her!
If using Enbrel, whether it's licenced for Alzheimer's or not, could give her back some of her dignity, then isn't it worth it??? Not just for the sufferer but for the family as well, because as we all know, this illness takes it's toll on the whole family and carers as well! Unless 'a real' Alzheimer's sufferer uses it then how the hell do we get to know whether it works or not! What do we have to lose????? Certainly not my mum, because to be honest with you, we lost our mum some time ago....every so often she reemerges and we get to spend a few seconds of the mum we used to have.
Sorry I just feel very strongly about this. The stage my mum is at now to be honest with you, there's nothing to lose by trying this treatment and I sometime wonder whether using Aricept from the start has helped or not as a friend of my mum's who started with dementia before my mum (five years ago now) is still walking about and going to day centres etc, admittedly has to live with her family and gets confused a lot of the times. She did not go on any medication for the Alzheimer's at the time and it is only now that the family have agreed to let her go on it. Does this mean that they have been able to have their mum for longer without taking the medication?? Who knows!
I do know though that if I can get hold of Enbrel on private prescription then that's what I'm going to do, for my mum and I suppose for us in a way, so that we can have some quality time back with our mum.
Love you Kim (marlene) I'm sure she won't mind me sayin that. We'll keep battling on for this sis, we need to.
Ok so I am by no means an expert on Alzheimer's or drugs but from what I've seen about Enbrel, it looks to me like the sufferers it's been used on have made a comeback from this debilitating illness. I was contacted by a lady who saw a video I had posted on the internet of my mum and she told me about her mum and how she was before and after using Enbrel.
Marlene is actually my mum, my sister uses her name as a user name, it her pseudonym...and I know my mum and the ingidnity this illness causes her, not from the carers but because even though my mum is as ill as she is, like my sister mentioned before...bedbound etc, she knows that the carers and even me should not have to do the things we do for her, changing her pad etc....she's only 70 after all. After the carers have changed my mum's pad, she sits and cries or sometimes swears at me, not to let them come back because it's not right and when I change her, she sits and cries, saying I shouldn't have to be doing this for her!
If using Enbrel, whether it's licenced for Alzheimer's or not, could give her back some of her dignity, then isn't it worth it??? Not just for the sufferer but for the family as well, because as we all know, this illness takes it's toll on the whole family and carers as well! Unless 'a real' Alzheimer's sufferer uses it then how the hell do we get to know whether it works or not! What do we have to lose????? Certainly not my mum, because to be honest with you, we lost our mum some time ago....every so often she reemerges and we get to spend a few seconds of the mum we used to have.
Sorry I just feel very strongly about this. The stage my mum is at now to be honest with you, there's nothing to lose by trying this treatment and I sometime wonder whether using Aricept from the start has helped or not as a friend of my mum's who started with dementia before my mum (five years ago now) is still walking about and going to day centres etc, admittedly has to live with her family and gets confused a lot of the times. She did not go on any medication for the Alzheimer's at the time and it is only now that the family have agreed to let her go on it. Does this mean that they have been able to have their mum for longer without taking the medication?? Who knows!
I do know though that if I can get hold of Enbrel on private prescription then that's what I'm going to do, for my mum and I suppose for us in a way, so that we can have some quality time back with our mum.
Love you Kim (marlene) I'm sure she won't mind me sayin that. We'll keep battling on for this sis, we need to.
The videos that I have seen have all been done by regular people/family/carers of Alzheimer's sufferers and they all look to me not editted in the slightest. They're just updates of the patients after each injection of Enbrel and each time there looks to be a marked improvement.
The only medication that my mum is on now is 50mg Quetiapine twice daily (an antipsychotic) and she's still on Aricept 10mg. We also have Haloperidol liquid for episodes when my mum is being really aggressive and we can’t get her to take her regular meds.
We don’t like using this too much as the side effects are not very nice but sometimes it’s necessary so that my mum doesn’t get too worked up as this isn’t good for her but we generally know when she’s going to ‘go off on one’. It usually starts when she’s refused her Quetiapine, so we try to give her just a little to calm her down then try and get her to have her regular meds. This does not always work though and we do have some rather aggressive, abusive outbursts from her. For a lady that never ever in her life, swore, my mum now knows words that I didn’t even think she knew existed!
Sam
We don’t like using this too much as the side effects are not very nice but sometimes it’s necessary so that my mum doesn’t get too worked up as this isn’t good for her but we generally know when she’s going to ‘go off on one’. It usually starts when she’s refused her Quetiapine, so we try to give her just a little to calm her down then try and get her to have her regular meds. This does not always work though and we do have some rather aggressive, abusive outbursts from her. For a lady that never ever in her life, swore, my mum now knows words that I didn’t even think she knew existed!
Sam
Well you could definitely try to get it via private prescription but it's not as if it can just be taken. As Nebiroth pointed out it has to be actually injected into the spinal column and you need a support staff and regular injections as well. Not for nothing has all the "research" been done at one place - a private clinic. I have psoriasis and have considered taking embrel for that purpose (for this condition it is injected under the skin rather than in the spine) but decided against it due to fairly serious posted side-effects. I'm sorry, but I am uncomfortable with the way this research is being done and am not convinced that adequate oversight is in place to stop the exploitation of a very vulnerable section of the population (not just alzheimer's sufferers but their desperate carers. I definitely wouldn't put in the "snake oil" category but there is going to have to be much more peer oversight before I would be happy with it being prescribed for someone I loved.
Edited to add:
Having read around the subject a bit, I'm not sure you could even get it on private prescription: it would appear that this doctor has patented the delivery system of this drug (don't know how you do that but he has) which would mean the only place this would be available would be at his private clinic in LA.
Edited to add:
Having read around the subject a bit, I'm not sure you could even get it on private prescription: it would appear that this doctor has patented the delivery system of this drug (don't know how you do that but he has) which would mean the only place this would be available would be at his private clinic in LA.
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Hi Sambi,
I wasn't trying to argue why or why not Enbrel should be made available - just trying to explain where it was in the process of being put through clinical trials.
Believe me, I do understand the desperation behind that sentence, but that is also the dangerous aspect to trying drugs/substances that have not had thorough medical trials.
Even the drugs that are licensed for Alzheimer's, such as Aricept, can have widely varying results and side effects from person to person. A drug's side effects are only discovered through controlled clinical trials. At least doctors now prescribing Aricept can recognise side effects and stop the medication when they become too serious.
I suppose the other issue about "What do we have to lose" is who is able to give consent for treatment for an unproven and thus potentially dangerous treatment? Certainly someone in the early stages of dementia could decide that they were willing to take the risk - but what about someone in the middle/late stages? Some doctors could be considered to be engaging in unethical medical experiments without the proper safeguards of a controlled trial.
I do think that amazing progress will be made in drug treatments for various forms of dementia, but the time lines are likely to be measured in years not weeks.
Take care,
Sandy
I wasn't trying to argue why or why not Enbrel should be made available - just trying to explain where it was in the process of being put through clinical trials.
Believe me, I do understand the desperation behind that sentence, but that is also the dangerous aspect to trying drugs/substances that have not had thorough medical trials.
Even the drugs that are licensed for Alzheimer's, such as Aricept, can have widely varying results and side effects from person to person. A drug's side effects are only discovered through controlled clinical trials. At least doctors now prescribing Aricept can recognise side effects and stop the medication when they become too serious.
I suppose the other issue about "What do we have to lose" is who is able to give consent for treatment for an unproven and thus potentially dangerous treatment? Certainly someone in the early stages of dementia could decide that they were willing to take the risk - but what about someone in the middle/late stages? Some doctors could be considered to be engaging in unethical medical experiments without the proper safeguards of a controlled trial.
I do think that amazing progress will be made in drug treatments for various forms of dementia, but the time lines are likely to be measured in years not weeks.
Take care,
Sandy
Dear marlene and Sambi,
If you are interested in what further drug treatment can be given for your mother, you might ask her consultant about Ebixa which is designed for people in the middle/late stages.
You can read more about it here:
http://www.alzheimers.org.uk/factsheet/407
It is apparently, as a result of NICE guidelines, not routinely prescribed on the NHS, but consultants are always free to exercise their own clinical judgement. Also, you've indicated that you would be willing to consider a private prescription if an NHS option was not available.
Take care,
Sandy
If you are interested in what further drug treatment can be given for your mother, you might ask her consultant about Ebixa which is designed for people in the middle/late stages.
You can read more about it here:
http://www.alzheimers.org.uk/factsheet/407
It is apparently, as a result of NICE guidelines, not routinely prescribed on the NHS, but consultants are always free to exercise their own clinical judgement. Also, you've indicated that you would be willing to consider a private prescription if an NHS option was not available.
Take care,
Sandy
Private precriptions should be approached with extreme care. As has been highlighted in news stories recently concerning cancer patients, someone who obtains treatment privately may then be denied ALL treatment under the NHS. For example if you obtained Enbrel privately, the NHS would then not pay for ANY other treatment.
Unfortunately, it's not usually possible, at present, to say "I'll keep taking the drugs/treatment the NHS provides and then "top it up" with a treatment not normally provided by the NHS by paying for it privately". It is usually "all or nothing" although each PCT will have it;s own policy and some are stricter than others.
This has caused so much controversy that the policy is currently "being reviewed" but that's how things stand at the moment.
Unfortunately, it's not usually possible, at present, to say "I'll keep taking the drugs/treatment the NHS provides and then "top it up" with a treatment not normally provided by the NHS by paying for it privately". It is usually "all or nothing" although each PCT will have it;s own policy and some are stricter than others.
This has caused so much controversy that the policy is currently "being reviewed" but that's how things stand at the moment.
Enbrel And Alzheimers
Has anyone in the uk been treated with enbrel for alzheimers i would very much like to hear from you. We are going to try and get embrel for my mum and see if it helps,we have to nothing to lose at this stage and all to gain. There is alot wrote about enbrel to treat alzheimers in usa and from what iv read it seems to work. Marlene x
Has anyone in the uk been treated with enbrel for alzheimers i would very much like to hear from you. We are going to try and get embrel for my mum and see if it helps,we have to nothing to lose at this stage and all to gain. There is alot wrote about enbrel to treat alzheimers in usa and from what iv read it seems to work. Marlene x
