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Old 04-07-2014, 06:58 PM
Tupelo3 Tupelo3 is offline
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Join Date: Mar 2013
Location: New Jersey
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Tupelo3 Tupelo3 is offline
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Join Date: Mar 2013
Location: New Jersey
Posts: 832
10 yr Member
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Quote:
Originally Posted by johnt View Post
Thank you all for your replies. Taken in isolation I agree with most of the points made. But, I'm unsure as to the extent to which we agree on the general issue: do you and your doctors wait for regulatory approval before acting, or do you act on incomplete theoretical reasoning, epidemiological data and animal studies?

Especially lacking, in my opinion, is a discussion of the opportunity cost of not moving early.

John
You offered two choices, wait or start the drug off label with no monitoring, no control for other variables, no method of truly knowing if it works. It's interesting that you didn't suggest the third alternative, which is to enroll in the trial and help get the proper research done so that all of us in the community will know if the drug actually has any neuroprotective benefit.

I believe your constant touting of self research is very admirable. I certainly believe in the importance of anecdotal evidence. With those stories come hypotheses that can then be validated or tossed aside (e.g. CoQ10). However, in this case, we've already moved beyond that. The drug will be properly tested. All that is needed now are PwP to volunteer to participate in the trials.

So yes, you can do it on your own, and hopefully it works. Unfortunately, neither you, or anyone else, will ever know for sure that it worked. Even if you appear to have slowed your progression three years from now, how will you know that it was the isradipine that was responsible rather than one of the other multitude of meds and supplements we all take (e.g. curcumin, coconut oil, green tea, blueberries, or whatever the story of the day is)? Furthermore, will you now forego any additional new drugs or supplements over these years or just keep on adding to the confusion?

I can understand when we take the supplements that most of us know probably don't work, but say anyway, what the heck.... However, isradipine is a very strong med which can easily cause hypotension in a PD patient. Trust me, I know from experience. Under the direct supervision of both my MDS and Cardiologist I started Propranolol to see if I could get any benefit in tremor control. Well, within one week my wife had to rush me to the emergency room as a result of a significant overnight drop in BP and heart rate. I was there for two days before they got it back under control.

So, my long winded answer to your question is that yes, there are certainly times when we should take research under our own control. This is particularly true when it concerns supplements, procedures, etc that have had good anecdotal evidence. In this specific case, with isradipine, I guess if your cardiologist recommends that you take a BP med, then it is certainly worth the discussion of taking this instead of one of the others if you will get equal BP control. However, I personally don't think the evidence is compelling enough that I would ever consider using this drug now off-label just for the hope of getting PD neuroprotection.
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"Thanks for this!" says:
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