Has anyone heard about Nilotinib helping people with Parkinson's and Lewy body dementia

There's a huge amount of research into what else TKIs can be effective for, and what things they can be mixed with for better results.

I think it goes to show that while the marketing departments of pharma companies would have you believe they are highly targeted drugs, the reality is that they have a lot of off-target effects. Some of these manifest as side effects, and sometimes there's a bit of happy news when an unintended effect can help treat another condition.

David.

Hi All,

The research is currently being undertaken by Georgetown Medical University ,Washington DC and currently they are in mid trials of administering a dose (less than for CML?) of nilotinib to part of a group of 42 volunteers who have been diagnosed with mild or moderate Alzheimers;the other part of the group at random have been assigned a placebo.The trial runs from Jan 2017 to December 2019.Previous limited trials with nilotinib at the same Centre indicated some temporary improvement to patients especially in terms of coordination during the period that they took the drug but on cessation soon reverted to their previous state.

The drug is thought to inhibit a specific molecular pathway that affects Alzheimers biomarkers;the objective is to assess whether the drug can affect the blood/brain barrier and specifically the researchers are assessing the possible affect on cerebrospinal fluid levels of amyloid-beta and tan as these are the two most harmful proteins very common in Alzheimers.

The reason that I am familiar with this research work is that sadly my partner has suffered  early age Alzheimers/Lewy body dementia and until 17 months ago I was a full time carer at home.Lewy body leads to deterioration of coordination and difficulty in use of arms and legs and affects ability to feed independently.I did investigate the cost of accessing nilotinib and to find a neurologist on a private basis to adminster the drug off label ( currently there is no FDA or EMA approval to administer nilotinib other than for CML);I was advised that there was a legal issue re a consultant being responsible if the drug had unintended consequences and also it might do little to stop the eventual progression of the disease.I dont know if the dose used would be the same as in CML but  if it were then it would come out at between two and three thousand pounds per month on a private prescription.We had private health insurance but after diagnosis were for the condition of Alzheimers terminated as is usual;insurers dont like MS ,dementia or motor neurone etc.

Imatinib has been shown to be helpful in treating a minority of forms of skin cancer even though its long term use appears to lead to thinning of the skin and sensitivity to exposure to sunlight.

David is correct in suggesting that targeted agents such as tkis have potential to treat conditions other than CML but we are in the very early stages of research in terms of use of tkis to treat dementia plus there is the cost involved and the issue of using a drug off label.

Regards

John