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-   -   Azilect prescribed since Adagio Trial results? (https://www.neurotalk.org/parkinson-s-disease/69129-azilect-prescribed-adagio-trial-results.html)

Fiona 01-10-2009 01:10 PM

Azilect prescribed since Adagio Trial results?
 
Just curious - how many people have been told by their doctors that they should be on Azilect since last summer, let's say........?

Ibken 01-12-2009 03:34 PM

well, not me,
 
Quote:

Originally Posted by Fiona (Post 442364)
Just curious - how many people have been told by their doctors that they should be on Azilect since last summer, let's say........?

i don't have a doctor ..aha..but a pd friend was recently given some azilect samples wth a 'try this' attitude. i pointed out the possibl probs with certain foo ds and so he didn't take the stuff. however , next visit to the neuro he went home with a new pill form of seligiline.

i just figure that's just what the pill pushers -the drug reps - are pushing lately. i wonder if there have been any job losses in he drug rep field? :cool:

Sasha 01-12-2009 04:34 PM

me, too
 
I was also given some free samples which I am hanging on to, reluctant to start another drug and yet so plagued by off-on stuff that I can do very little - my doc said it might help that aspect of the disease....one person I know has been on this med 3 months and seems to be doing much better.

Any comments?

lurkingforacure 01-12-2009 04:51 PM

We take it
 
and it's expensive because it is new but we have no problem with food interaction. My husband believes it does help, he went off it once to see what happened and did say he felt worse (placebo? impossible to tell, but we acknowledge that possibility).

He takes it at night, which makes his natural dopamine last longer and he can get better (and I use that term loosely) sleep. Whether it is neuroprotective, its big claim, we are skeptical but hopeful. Also, our neuro told us that it is really almost the same thing as selegiline, but you have to take a whole lot more selegiline than azilect (rasagiline) to get the same therapuetic effect.

One thing that's a negative: you can't take any cold/cough meds because they have these heinous warnings on them. We try not to get sick, and instead gag down that herbal blend MyTea. Nasty, but it is keeping both his allergies at bay as well as our kids constant barrage of germs they come in with.

Fiona 01-14-2009 10:03 PM

thanks for weighing in. I know that the Adagio Study ( why and how they choose these names is so beyond me) is highly-touted as the first US approved study to "prove" that a drug can slow down the progression of PD.
My doctor was very quick to want to put me on it because of that. I, however, am reluctant because it is an MAO inhibitor, adding a whole level of complication and dependence and possible interactions that ultimately no one will take responsibility for if I get in trouble. Like I notice that one of the warnings is that you shouldn't have general anesthesia while taking this drug. So what happens if you suddenly need surgery unexpectedly - or expectedly - but are dependent on this drug to the point where interrupting its course will seriously affect your wellbeing? It says it can provide "mild symptomatic relief." But if it's not that powerful, then why risk all kinds of interactions with food, other scrips, OTC meds for something that isn't that great.

These are of concern to me, especially when I think that a drug that "may delay" something is dubious...because how can you ever say how much some one may or may not have progressed if they hadn't taken it. It's pure speculation in a way. So in another way it's a perfect money maker, too. "Well, this could help so better take it, but you'll never really know quantitatively what it did or didn't do for you...."

This slays me because people get so angry about 'snake oil merchants' who want to 'make money off of desperately sick people.' Yet isn't that what our system is totally based on? We don't get anything approved unless someone is going to make lotsa money off us. Yet people rarely question the big companies...I could see where it could become almost malpractice not to prescribe Azilect if it is the ONLY drug 'shown' to delay, or to be truly neuroprotective etc. etc. SO I just was curious whether there had been any stampede by neuros in the last few months on this one.

All that said, lurkingforacure, I so do hope your husband continues to find it helpful. That is good news to me, and I am glad to hear that report.

BUT really, don't you wonder how they come up with these names? Azilect - hmm, conjures up vague associations with Ancient Mesoamerican knowledge, but something that you choose or select to do, but that is also elected, meaning winning popular approval.....plus sounds kind of dry, and golden, and wise and transcendent.....whereas the generic, rasagiline - well, rags, sagging, gasoline - a kind of Country girl gone wrong in some Dickensian back alley......oh, don't mind me. Just free associating...amazing how powerful a few phonemes can be, right?

Sasha 01-15-2009 10:38 AM

Electing to follow the Aztecs? Electing Aztecs? Awsome Actecs Always in Action?
 
Actually, I need to add that my doc did not mention the purported neuroprotective qualities of this drug, only that it might help prolong the action of the Sinemet.

Fiona 01-15-2009 11:09 AM

Lecturing the Aztecs on selection. From an Aztec lectern in Arizona.
 
Quote:

Originally Posted by Sasha (Post 446609)
Actually, I need to add that my doc did not mention the purported neuroprotective qualities of this drug, only that it might help prolong the action of the Sinemet.

Yeah, Sasha, I think the neuroprotective mandate is only possible since these trial results have been published. And maybe this product would help the on-offs and I hope people find that it does. I just have found in the past that some things helped for a while, then ultimately felt like they made things worse or the cost in side effects was just as bad as the on-offs which returned anyway...and to be totally redundant, our drug regimens are all pretty precariously balanced, and I have anxieties about getting dependent on something which can affect one's system profoundly without the sense that someone would really know what to do if you have a big problem. Or will the company be there if the product is suddenly recalled for some reason, or you get into an accident and need surgery, to help you with transitions, since it is so new and unknown.

Sasha 01-15-2009 01:26 PM

Accolades to Aztec Acumen from Arizona
 
You captured the exact reasons my free samples remain languishing in the medicine cabinet! Plus one more to add - fear of possible interactions with other meds in my pharmacological cornucopia.

Unfortunately, much of what is possibly helpful in PD treatment is also new and untried (at least in this society), leaving one on the horns of the dilemma - to face the uncertain dangers of new treatments (hello, Guinna Pigs!) or certain destruction from Parkinson's. Every time I take a supplement, I'm swallowing a chemical uncertainty, choosing to wager that it will do something helpful, or at least nothing harmful. And in the meantime, as my ability to walk becomes more and more unpredictable, strange new pharmaceuticals sounding like Aztecs seem less risky, compared to my fantasy of the potential reward.


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