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Manolo

Questions about Exenatide? Did not see it in the Open Forum

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First, if there is discussion about Exenatide on the Forums, please advise me and I'll go there and read.

Questions:

1.  What are the chances of getting my Neurologist or my Movement Disorder Specialist to prescribe Exenatide for PD?  My next scheduled visit is 4 months away and I don't take meds.

2.  Do you have experience with or knowledge of Exenatide related to PD?  Side effects?  Use for Diabetes?

I don't get a chance to visit the forums very often so this subject (Exenatide) may have been discussed and re-discussed; I was unable to find discussion thru a brief search.  Some may have experience with an innovative or free thinking MDS who is willing to prescribe a med that was originally intended for a disease other than PD.  I would appreciate your experience/story.

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Well...I found the Search space in the upper right hand corner of the screen and typed in Exenatide.  It has been discussed on the Forums in a limited fashion.  Here is why I ask about this med: Recent news reports suggest that trials have great results for PD patients using Exenatide.   The benefit is specifically seen in improved motor  function.  Seems like the trial participants were all on L-dopa.  The participants who received Exenatide showed improvement; the placebo participants showed worsening.  Anxious to hear of anyone's experience or knowledge of this drug.

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As a type 2 diabetic I have lots of experience with Exenatide, first with Byetta and now Bydureon. I have successfully used these drugs for eleven years. I do not have PD, however if you are looking at safety and longevity with a non PD patient I can tell you they have been wonderful for me. I am a caregiver for my husband with Parkinsonism, thus my presence on this board.

Hopefully you will find your answers.

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Dear Swamper,

What an excellent set of articles you led me to.  Thank you.  Based on the articles, I'll sit back and wait...regarding the drug. However, I'll certainly bring the topic up at my next Dr.'s visit.

Also to Pathfinder, thanks for the response.

 

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It makes me wonder what happens to the body to take a drug that was made for one problem and you take it for another.   For example people were told to take a high blood pressure pill called Dynacirc  to slow down PD.  Wouldn't that lower the BP and cause you to feel dizzy and pass out if it wasn't high to begin with?    What if one day someone discovers that C/L can help with something else.   How would people feel taking the C/L when they don't have a dopamine deficiency?

 

 

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The drug exenatide is not yet approved by FDA for treating PD,will any doctor be willing to prescribe this for a pwp?I understand it still have to undergo more trials for effectiveness and safety in PWP.Exenatide and Nolitinib showed promising results from previous trials,but are not yet approved by FDA for PD.Some MDs, might be willing to experiment and prescribe them for PWP,but I don't know any.How I wish this medications can be available soon for treating PD.

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Swamper's word-of-caution article includes this:

We are not clear on whether Exenatide is having a neuroprotective effect, or simply stimulating a dopamine-based positive motor outcome. And this is why the scientific research community are saying that it is too early to be getting too excited by the result and making judgements about the use of Exenatide in Parkinson’s disease.

 

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Jul,

Swamper alerted us to 2 excellent articles.  Your cut and paste from the second article clarifies and dampens the excitement from the first article.  However, the second article seems to give us 2 choices as to what the drug is doing.  The 2 choices from the cut and paste are 1. "a neuroprotective effect" or 2. "simply stimulating a dopamine-based positive motor outcome".

The Number 2 choice raises the question, If the drug is just causing a positive motor outcome, doesn't that have enough merit to use the drug simply for the improved or "positive" motor outcome?  Would the dopamine-based stimulation cause undesirable side effects? I don't know enough about the mechanism of L-dopa, but is the action of the Exenatide (dopamine-based stimulation) mimicking the mechanism of L-dopa, thus dooming Exenatide to have the eventual undesirable side effects that the majority of L-dopa users encounter down the line?  

In other words, what is the downside of simply stimulating a dopamine-based positive motor outcome?  Of course, most everyone would hope that Exenatide is neuroprotective, but if not, do the trial results indicate a worthwhile PD drug?  Unfortunately, I'm always seeking answers from the crystal ball...this shiny computer screen in front of me.  But maybe you or someone can answer the questions.  Thanks in advance.  Manolo

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15 hours ago, Manolo said:

Jul,

Swamper alerted us to 2 excellent articles.  Your cut and paste from the second article clarifies and dampens the excitement from the first article.  However, the second article seems to give us 2 choices as to what the drug is doing.  The 2 choices from the cut and paste are 1. "a neuroprotective effect" or 2. "simply stimulating a dopamine-based positive motor outcome".

The Number 2 choice raises the question, If the drug is just causing a positive motor outcome, doesn't that have enough merit to use the drug simply for the improved or "positive" motor outcome?  Would the dopamine-based stimulation cause undesirable side effects? I don't know enough about the mechanism of L-dopa, but is the action of the Exenatide (dopamine-based stimulation) mimicking the mechanism of L-dopa, thus dooming Exenatide to have the eventual undesirable side effects that the majority of L-dopa users encounter down the line?  

In other words, what is the downside of simply stimulating a dopamine-based positive motor outcome?  Of course, most everyone would hope that Exenatide is neuroprotective, but if not, do the trial results indicate a worthwhile PD drug?  Unfortunately, I'm always seeking answers from the crystal ball...this shiny computer screen in front of me.  But maybe you or someone can answer the questions.  Thanks in advance.  Manolo

 

One of the side effects listed was weight loss.  For some of us (ahem - down about 10 lbs of the 35 targeted) that might not be such a bad thing.  But for a lot of PWP, especially in more advanced stages and/or when elderly that weight loss can be a big problem.  There are probably other side effects but that was one of the bigger ones.  

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Out of curiosity, I used my insurance company's online price checker to see what taking exenatide or nilotinib off-label would cost me. Just to be clear, even if I could afford to, I have NO intention of asking my doctor to prescribe either drug off-label.

IF insurance covered it, Byetta (daily injection) would cost $2.50/day. Bydureon (weekly injection) would cost more than $10/day. Until recently, I was taking isradipine off-label (generic DynaCirc, which miracleseeker mentions above) and my insurance covered it with no questions. But isradipine is a cheap generic for a common condition (high blood pressure).

For what it's worth, I don't have especially high blood pressure, and had no noticeable side effects from isradipine, but I don't have orthostatic hypotension either. If I did, I doubt my MDS would have prescribed isradipine. Isradipine is in Phase 3 trials for PD, and has been shown safe for PD patients in Phase 1 and 2 trials.

But since I don't have Type 2 diabetes or cancer, I'm pretty sure my insurance wouldn't cover exentatide or nilotinib. Cash price for exenatide (either Byetta or Bydureon) would be about $600/month. Maybe doable, if my wife and I made a lot of financial sacrifices. Nilotinib (Tasigna) would be more than $12,000 for a four month supply, taking the lowest dosage studied for PD (150mg/day). Simply not possible.

Good news, as I see it: clinical trials for both drugs are moving forward rapidly. Because both drugs are already approved for other conditions, IF (big 'if') either passes Phase 3 trials, they will be available on-label for PD shortly after--perhaps as little as 2-3 years from now. Of course, chances are neither drug will live up to the initial hype--another reason not to jump in w/ off-label use..

Two or three years from now is obviously too late for some, including my dad, who died from PD-related complications in February. But if exenatide really does what it appears to do--not only halt progression, but reverse it--it won't be too late for many more of us, including folks with quite advanced PD.

I'm content to wait and see how clinical trials play out. I've checked and I won't qualify for the phase 2 nilotinib trial (my MDS is one of the researchers). I do plan to continue with an upcoming phase 2 trial of the drug testing I'm currently involved in.

It's worth noting, the delay getting most promising drugs through clinical trials is difficulty finding enough volunteers for those trials. When possible, I'd rather put my time into that when, rather than trying to get my doctor to prescribe me super expensive, barely-tested drugs off-label. 

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Good post ShopGuy.I am sure anyone with PD or any disease that doesn't have a cure wants a cure,some people might be more desperate than others If the drugs are really promising as the researchers claimed,some pwp wouldn't care about the price and  will get them off label.I am thinking of participating in the nilotinib trials,but would have to check with my MDs first to know if I will qualify.I checked and found out that the price of nilotinib is outrageous without insurance coverage.Washington should do something about controlling the price of drugs.

ShopGuy-how long were you on Isradipine? Was it beneficial?

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Hi Otolorin,

I think I took isradipine for a little over a year. No symptomatic benefit, as far as I could tell, but wasn't expecting any--if it works, it's only expected to slow progression. Cost to me, after insurance, was $25 for three month's supply. $250, if I had to pay full price.

My MDS tells me my progression is remarkably slow. I'm in very good health apart from PD, exercise regularly, and have taken Azilect continuously for the last two years. Maybe some or all of those things have helped. My blood urate levels naturally test high-normal--as high as the target levels in the current phase 3 trial for inosine. I was also dx'd very early on, in terms of symptoms, and am left-side tremor-dominant, and young(ish) onset--all associated with slower progression. Maybe I'm just lucky (or as lucky as it gets, having an incurable progressive disease).

When I finish the clinical trial I'm involved with, I intend to start back on isradipine, and take it until results from the isradipine trial in a couple years. If results are negative, I'll stop. If positive, obviously I'll continue.

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5 hours ago, stump said:

 

One of the side effects listed was weight loss.  For some of us (ahem - down about 10 lbs of the 35 targeted) that might not be such a bad thing.  But for a lot of PWP, especially in more advanced stages and/or when elderly that weight loss can be a big problem.  There are probably other side effects but that was one of the bigger ones.  

As non PD user of both Byetta and Bydureon for eleven years, I can attest to the weight loss side effect. I lost thirty pounds with these drugs using diet and exercise as well, these drugs suppress the appetite, overeating will bring on nausea and vomiting. Therefore, weight loss maintenance is easy. There is also a food aversion side to these drugs, spicy foods, certain sauces are to be avoided for me. Another effect is sometimes you forget to eat, the appetite suppressant is that good. Some doctors are prescribing this class of drugs now for weight loss even tho patients don't have diabetes.

As far as cost, I get a 90 day supply for $85, if not for our premium insurance I would really have to budget! I plan on staying on Bydureon until my Endocrinologist says differently. Hope this helps.

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Hi ShopGuy,

                    it is good to know that some pwp on this forum have tried some of these repositioned medications and share their experiences,even when the final phase of the trials are not completed.I will be looking forward to discussing these medications with my MDs,during my next appoinment.Thanks for your response.lol....

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