Exenatide - possible PD med: Hi all... - Cure Parkinson's

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Exenatide - possible PD med

MissRita profile image
39 Replies

Hi all!

Interesting article from 2017. Anyone have any feedback or information on this?

newscientist.com/article/21...

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MissRita profile image
MissRita
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39 Replies
pdpatient profile image
pdpatient

Yes, MissRita. I have since the day it was approved for diabetics circa 2007 or so. It was called Byetta then. It had to inject it 3 times a day, 1 hour before meals. These days it's called Bydureon (i think variations of Byetta still exist) but once a week Bydureon works very well.

I have since switched to Trulicity which seems to give better results for my diabetes. Unfortunately, I have yet to see Parkinson's symptoms benefits, at least in a sustainable way.

Needless to say, I was still diagnosed with Parkinson's in 2012🥵. Go figure!

MissRita profile image
MissRita in reply topdpatient

Well thanks so much for the information. I’m not a diabetic but I just thought it was an interesting article. Do you find that your diabetes is worse with the PD?

pdpatient profile image
pdpatient in reply toMissRita

Funny that you should ask. It's kind of a strange and bizzare situation. I would say that overall PD was a blessing in disguise.

I lived an extremely productive, happy and carefree life and travelled extensively for work and pleasure. It all came crashing down after PD diagnosis. My lifestyle on my company's expense account meant that my diabetes want poorly controlled. I had no self control over food and I still don't. There had to be an outside force.

Fast forward to 2019. Rytary was prescribed to me. It's common knowledge now that food and Rytary don't go together, no matter what anyone says. So I took up intermittent fasting.

My best days are those that are constructed around a 3 hour eating window at night between 7-10 pm. Rest of the day/night is fasting or semifasting with the rare coffee or tea.

So, my wife is extremely happy that with the forced regimen of fasting and medication has totally controlled my diabetes and I also lost over 70 lbs. I still have more to lose (weight that is).

Hope that answers your question. I was just pointing out that Exenatide might not be all that it's hyped up to be.

in reply topdpatient

Do you find that the fasting is slowing the PD progression down?

pdpatient profile image
pdpatient in reply to

Hi, Shaken, I am not sure. I find that I feel extremely well as a Parkinson's patient during fasting with minimal symptoms. When I am not able to fast for whatever reason, I find that the symptoms are worse. As a bonus I find it beneficial for my diabetes. Whether or not it has been helpful for my Parkinson's progression, time will be the only guide🙂.

The big thing is that I always believed in fasting for a long time based on anecdotal observations and now this concept is now validated by growing consensus. It has now been quite a fad and it helps explain myself and convince other people in my circle of life who had previously been adamant about the so called potential "harm" that I was causing to myself.

Now, these days, nobody questions me😀 Not even my doctors!!

MissRita profile image
MissRita in reply topdpatient

I don’t think intermittent fasting is harmful unless someone is possibly anorexic or bulimic or what not. I do fully believe that if your body is reacting well to it which I said earlier in this thread that mine has and I’m all for it! I can’t tell you how much better I feel when I go hours without eating and as odd as it may sound my body I think likes the break from food in general. Basically for me if it ain’t broke don’t fix it! LOL

pdpatient profile image
pdpatient in reply toMissRita

MissRita, I have to admit that however great the benefits that fasting brings to anyone and not just PwP's and diabetics, food does provide a level of comfort that is unparalleled😂😇

MissRita profile image
MissRita in reply topdpatient

Yassssss!

MissRita profile image
MissRita in reply topdpatient

I’m curious about intermittent fasting. Typically when I go without food for many hours I do feel much better for whatever reason. I’m still learning how to go about doing it in a way that I benefit. Is there a book or menus or food lists that you know of?

pdpatient profile image
pdpatient in reply toMissRita

I follow Dr. Jason Fung from Canada who has written extensively about fasting. See his videos here:

google.com/search?q=jason%2...

MissRita profile image
MissRita in reply topdpatient

Thx!

Cagey84 profile image
Cagey84

Exenatide is under investigation not for its use in type 2 diabetes, but because it appears to be neuroprotective in PD. There is a lot of work under way with the whole drug class, this article is a good summary - content.iospress.com/articl...

MissRita profile image
MissRita in reply toCagey84

Thank you!

WinnieThePoo profile image
WinnieThePoo

youtu.be/vzz_kPuBmTA

MissRita profile image
MissRita in reply toWinnieThePoo

Thx!

BUSHPILOTS profile image
BUSHPILOTS

I have been on Bydureon for over a year and it has helped me. If you can get on it (diabetic etc) , I highly recommend giving it a try and see what it will do for you. I added a potent probiotic to counter some gastroparesis.

MissRita profile image
MissRita in reply toBUSHPILOTS

Unfortunately I am not a diabetic so I probably won’t be able to get on it but it’ll be interesting to see as I get tested for Gastroparesis in the next couple of weeks. I’m going for a gastric emptying study In the beginning of next year so we shall see what happens with that. What potent probiotic do you use to help with Gastroparesis? I am in search of one as this gastroparesis is driving me crazy. They are doing the preliminary study but all symptoms and signs point toward me having it.

BUSHPILOTS profile image
BUSHPILOTS in reply toMissRita

Vitamin shoppe brand 50 million something blah blah blah

Surfdoc1 profile image
Surfdoc1

So I am a PWP since 2017 dx with 2004 being initial tremor and left sided dystonia . slow proggresor so far thank goodness. just started mono therapy in 2019 with Azilect . Lots of benefit from intermittent fasting and keto diet as well as mannitol related to improved motor function . However my worst sx was fatigue brain fog speech smell drooling and urinary issue. Started Exenatide 5 weeks ago with 1x per week injection of Bydureon bcise. FEEL MUCH IMPROVED with regard to fatigue , cognitive matters and fog. All seem much better almost immediately. That said it has not done much for motor. Exenatatide being a GLP1 agonist has a very low side effect profile and effects glycolysis and glucose metabolism which is one of the many targets of PD research(that being metabolism). So, many variations of PD in the world and it seems that more and more we are hearing about targeted customized medical management for PWPs. Exenatide may prove to be one of those targeted mechanisms of action to improve those that fit in the bucket of PD related to abnormal metabolism including lipid and glucose metabolism which could also be the reason why you hear so many PWPs benefit from keto diet, yet others no benefit. Just my thoughts as I stay abreast of the literature . Check out the you tube exenatide and parkinsons videos. Very interesting research. Phase 3s in process.

Patrickk profile image
Patrickk

My cut-and-paste post on Exenatide -- I was on Byetta, then Bydureon for five years before I went into remission on Type II diabetes. Curious if the same medicine saves me twice. :-)

* * * * * *

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on for 10 years and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to Bydureon.

cureparkinsons.org.uk/news/...

pdpatient profile image
pdpatient in reply toPatrickk

Amazing information, Patrickk. Diabetes remission? I have heard about its possibility, but never "met" anyone actually experience it.

Please tell me/us more.

Patrickk profile image
Patrickk in reply topdpatient

I'm told there is nothing unusual in remission of Type II diabetes -- basically if you lose a lot of weight. Over time I dumped 85 out of 100 overweight pounds -- the last 35 pounds after my cardiologist told me that for every 2 pounds I lose, my blood pressure would go down 1 point.

I would like to see a movement among PD patients to get Bydureon now. It is a repurposed drug -- taken safely by millions. There looks to be at least a 50/50 chance it is neuroprotective and will halt the progression of movement problems. But, doctors are stuck in "not indicated" mode. 2/3 might be able to get Bydureon if they (we all) take the Homeostasis model assessment IR test -- then the rest could say why not us too. Big grandiose dream.

PS The active ingredient in Bydureon was discovered in the saliva of a Gila Monster by a Bronx VA endocrinologist -- so I guess we could say it's a "natural product."

😀

pdpatient profile image
pdpatient in reply toPatrickk

Patrickk, Thank you. I am doubly reinspired.

Vegegardner profile image
Vegegardner in reply topdpatient

Have you watched the DVD. Reversing diabetes in 30 days ?

pdpatient profile image
pdpatient in reply toVegegardner

No I haven't but now that you mention it, I will look it up. Thanks.

MissRita profile image
MissRita in reply toVegegardner

Is it on Amazon? Where do I find it or can I possibly find it on YouTube?

pdpatient profile image
pdpatient in reply toMissRita

MissRita, here is the YouTube link:

youtu.be/nBJZnakkoss

Vegegardner profile image
Vegegardner in reply topdpatient

That's a skill. To be able to put a doco up like that. If I could only post my DVDs. I don't have time to learn now.Thankyou

Rhyothemis profile image
Rhyothemis

Another activity of Exenatide - it activates beta adrenergic receptors.

"Exenatide reportedly induces vasodilatation in hind quarters in rodents as a result of activation of β-adrenergic receptors"

link.springer.com/article/1...

The Science of Parkinson's blog had an interesting post recently on a beta adrenoceptor agonist:

scienceofparkinsons.com/202...

JayPwP profile image
JayPwP

I have a few questions:The trial model states 2mg sub-cutaneous once a week.

Is it 1mg twice a day on a decided day of the week, or a single injection of 2 mg? And is it to be taken at a specific time, any time restriction relative to food ingestion?

JayPwP profile image
JayPwP in reply toJayPwP

Please would someone clarify?

MissRita profile image
MissRita in reply toJayPwP

Clarify what?

JayPwP profile image
JayPwP in reply toMissRita

Asking the forum Rita, to respond to my question above

MissRita profile image
MissRita in reply toJayPwP

Ah ok ;)

pdpatient profile image
pdpatient in reply toJayPwP

@jaypwp, it is a single injection every 7 days and you can choose any day of the week. It comes in a prefilled pen with a built in injector. Why do you ask?

RKM

JayPwP profile image
JayPwP in reply topdpatient

I am thinking of taking the injection to see if it benefits my PD.

pdpatient profile image
pdpatient in reply toJayPwP

Only if you are diabetic if you want a personal prescription in the USA per the FDA.

Here's the trial information if you are interested :

clinicaltrials.gov/ct2/show...

BUSHPILOTS profile image
BUSHPILOTS in reply toJayPwP

not the question you asked but i take bydureon one injection 2mg at one time same day every week. maybe the trial is the same

JayPwP profile image
JayPwP in reply toBUSHPILOTS

Yes, trial is on same parameters

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