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Old 06-11-2012, 07:26 PM   #1
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Anyone successful with off label scrip?

Seeing a Doctor for possible IVIG prescription for my mother in July. Cost is crazy, but we feel we must try. Wondering if anyone has been able to get off label scrips for IVIG, Leukine, Enbrel etc. Would love to hear a success or failure report before we spend a lot of money.

 
Old 06-12-2012, 06:12 AM   #2
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Re: Anyone successful with off label scrip?

Please forgive me if I am off-base here. IVIG, Leukine, and Enbrel are all immuno-suppressive, anti-inflammatory, or myeloid-mobilization. Aren't their use for treatment of dementia highly experimental?

 
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Old 06-12-2012, 07:58 AM   #3
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Re: Anyone successful with off label scrip?

Yes, it is highly experimental and has not been proven effective. Possible changes in the Alzheimer's brain was shown in MICE with Leukine. IVIG has gotten to the safety in human clinical trial stage as of 2009 but I can not find out if it is ongoing or has been stopped. As of Feb 2012 Enbrel was just beginning human trials. As in another post.... The transition from benefits received in Animal trials or text tube experiments to human effectiveness is a long leap that doesn't happen often. I look at the fact that there are patients with other medical conditions on these medications that do have Alzheimer's as a side note that they are NOT the miracle cure we wish for.

Be sure to investigate the side effects of these medications when they are not needed for the on label usage. Be sure to investigate the credibility of the physician that are prescribing them off label. Be sure to investigate the credibility and currency of the information gleaned from the internet. Old dis proven information is still floating around out there as well as testimonials from a single unproven source. Be sure to determine if the information related to human effectiveness and not test tube or animal studies.

My bet is... if there is an effective treatment or cure for this disease... you will not need to find it on the back pages of the internet If you want to try these unproven treatments then look for a credible clinical trial that you can participate in. You can do this through the Alzheimer's Association. That way you can be part of the solution... not taking chances!

Love, deb

 
Old 06-12-2012, 11:45 AM   #4
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Re: Anyone successful with off label scrip?

To expand on Deb's nice explanation a bit deeper, IVIG is basically intravenous infusion of pooled and concentrated human immunoglobins (IgG). Ig's, along with cytotoxic T cells are the 2 principle ways your body fights against foreign invaders, or in autoimmune diseases or in graft vs host disease, against your own self.

Let's segue to the new trial vaccine recently reported in Lancet, CAD106. CAD106 is a new type of "active" vaccines designed to activate your body's immune machinery against ameyloid-beta, the nasty plaque forming peptide in Alz. It is also specifically engineered to not elicit the cytotoxic T response, which has proven to cause a lot of unwanted complications. So far it has passed limited Phase I trials, showing that it is tolerated by patients, and that cytotoxic T response is within acceptable limits. Phase II will begin to show how effective it will be in fighting the disease.

Back to IVIG. The Ig used in IVIG is a pool collection of antibodies (from blood donations). IVIG has shown benefit in limited situations, some benefit in alzheimers. However, it is thought that the active ingredient was the small percentage of antibodies that are actually against amyloid beta. Hence the original seed of an idea for the CAD106.

The IgG antibody molecules in IVIG also has a second property. In about 5% of the IgG molecules, there is a specific modification on the Fc region that confers immuno-suppressive and anti-inflammatory properties. Hence the idea to use high dosage IVIG to treat a plethora of autoimmune conditions was borne. Now, other anti-inflammatory drugs have also been shown to have mild benefit against alzheimers, for reasons yet not clear. It may be that plaque deposits happen in an inflammatory environment, and anti-inflammatory drugs, such as enbrel, may have benefit in this regard. Understanding and leveraging the anti-inflammatory and immuno-suppressive properties of this special Fc modification is a very active area of clinical research right now.

As to why a myelopoiesis agent such as GM-CSF (Leukine) has any effect on Alz is a total mystery to me.

 
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Old 06-12-2012, 12:41 PM   #5
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Re: Anyone successful with off label scrip?

Thank you for that more technical explanation Luau!!

Each of us wants hope. We want to "fix" this disease in our loved one. ...."but we feel we must try!".... I read this statement repeatedly when talking about possible unapproved treatments. If it worked in a rat it has to work in Mom, or Dad!! If it worked in a test tube it has to work for us. If somebody touts a cure then we are brought into the fold because we so wish it to be true. When in fact we can be doing more harm than good. The best thing you can give yourself is acceptance of reality. Today there is no effective treatment or cure for Alzheimer's. Hopefully one day there will be but that day is not today.

To that end... if you feel you must try something.... consider a clinical trial. There are many trials in progress right now that may one day bring about the treatments and cures we all wish for. Check with your local doctor, hospital, or Alzheimer's Association for clinical trials that you can participate in. Rather than embarking on an course of treatment that may do harm and not be beneficial... be a part of the answer for the future!!

Love, deb

 
Old 06-12-2012, 07:46 PM   #6
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Re: Anyone successful with off label scrip?

Quote:
Originally Posted by Luau View Post
As to why a myelopoiesis agent such as GM-CSF (Leukine) has any effect on Alz is a total mystery to me.
Okay. I hated having said something like that and leaving it. So I did a bit of background reading. The background is the original observation that rheumatoid arthritis sufferers have a lower incidence of developing dementia. So people started looking at 2 possibilities. One, the drugs that RA sufferers are taking might also work against dementia. Hence the interest in immuno-suppressives and anti-inflammatories. The second possibility is that something the RA sufferer overproduces. One such compound is GM-CSF, which stimulates production of white cells call macrophage that perpetuates the chronic inflammation. The hugest problem with these ideas is that nobody really knows why they should work against Alzheimer's, only suppositions. For GM-CSF, scientists supposed that GM-CSF would stimulate production of more macrophage or microglial cells that can eat up the amyloid beta protein deposits. Unfortunately, there is a more recent report that says local concentrations of GM-CSF is elevated in the brain of Alzheimers patients, which means giving the patients more GM-CSF is unlikely to have the desired curative effect.

The biggest hurdle in finding a cure for Alzheimer's is the inherent discrepancy between mice models and human sufferers for the disease. Many of these drugs work decently in the current mouse models, but these drugs are working at the earliest stages of the disease. In humans, these early stages are subclinical. Human sufferers are already way pass this stage by the time they are diagnosed. By that time, there is already so much physical damage to the brain that these very same drugs have little effect.

 
Old 06-13-2012, 07:49 AM   #7
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Re: Anyone successful with off label scrip?

Well maybe some day we all need to take something to PREVENT dementia.

Nina

 
Old 06-16-2012, 02:35 PM   #8
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Re: Anyone successful with off label scrip?

Quote:
Originally Posted by Gabriel View Post
Yes, it is highly experimental and has not been proven effective. Possible changes in the Alzheimer's brain was shown in MICE with Leukine. IVIG has gotten to the safety in human clinical trial stage as of 2009 but I can not find out if it is ongoing or has been stopped. As of Feb 2012 Enbrel was just beginning human trials. As in another post.... The transition from benefits received in Animal trials or text tube experiments to human effectiveness is a long leap that doesn't happen often. I look at the fact that there are patients with other medical conditions on these medications that do have Alzheimer's as a side note that they are NOT the miracle cure we wish for.

Be sure to investigate the side effects of these medications when they are not needed for the on label usage. Be sure to investigate the credibility of the physician that are prescribing them off label. Be sure to investigate the credibility and currency of the information gleaned from the internet. Old dis proven information is still floating around out there as well as testimonials from a single unproven source. Be sure to determine if the information related to human effectiveness and not test tube or animal studies.

My bet is... if there is an effective treatment or cure for this disease... you will not need to find it on the back pages of the internet If you want to try these unproven treatments then look for a credible clinical trial that you can participate in. You can do this through the Alzheimer's Association. That way you can be part of the solution... not taking chances!

Love, deb
Thanks for the detailed response. I hardly understand how an ongoing Phase 3IVIG clinical trial ocurring in 44 locations across the country sponsored by Baxter Health Care represents the "back pages of the internet." Given that IVIG is already FDA approved for other conditions we feel it is less dangerous for my mother than a new created "experimental" drug. Furthermore, the ongoing phase 3 trial (there are others) is too far along for new participants. We are not naive and don't anticipate any miracle cure. The phase 2 data did not demonstrate a cure, only a statistically significant delay in progression. Of all the testing being done right now, it was actually Dr. Samuel Gandy (a notorious skeptic and leader in the field) who showed optimism re. IVIG. Given that there is nothing else really available that might alter the disease we are going to go ahead and try this for awhile. We'll let you know if the money was well spent or flushed down the toilet in 6 months or so. At least, on the bright side, my wife and I have started donating blood on a regular basis to help in some miniscule way to help provide some additional raw material for the compound. The future is now!

 
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