As a recently diagnosed newbie, I’m eagerly awaiting the results of the phase iii trial of Exenatide (as per Obiora’s recent thread). I realise that I may be guilty of the naive optimism that comes with a recent PD diagnosis – I’ve read that veteran PWP can become very jaded and disillusioned with the promise of new treatments, only for them to fall at the last hurdle. This is totally understandable considering the lack of meaningful new treatments over the years.
However, I will allow myself to indulge in the ‘hope’ that Exenatide is going to come good - because (from what I’ve read) there does seem to be a lot of enthusiasm about the results of this trial.
Anyhow, I was hoping that somebody with a bit more insight into the mechanisms of Exenatide could answer a few questions.
1. I do strict keto – would this be compatible with Exenatide? Would Exenatide have any benefits over and above being in a constant state of ketosis?
2. I haven’t yet started on any PD drugs. If it were to prove useful, would I be prescribed Exenatide without first being on PD meds?
3. Is Exenatide hugely different to NLY01 that failed in the last trial?
4. How optimistic are others about this?
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SallyBeeBobs
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I'm no expert, but on point 1) I'd say that could be an issue.
For e.g. many diabetes drugs like Metformin block gluconeogenesis in the liver, which is how our bodies make glucose when we're not eating carbs in a state of fasting / on keto. This makes drugs like Metformin a big no-no when fasting for longer stretches.
I'm not sure how exenatide works, but I'd be careful with it if it had a similar mechanism of action
Thanks Steegan. I could certainly be persuaded to add a few carbs here and there if needs be! I've done strict keto in the past but the main reason I do it now is to try and slow down PD progression.
I’m no expert, but I know that I’ve always felt better, healthier, and stronger when I’m in ketosis. I also experience a higher level of mental clarity.
There are quite a lot of videos about this on youtube.
Here are just a few examples of articles that google throws back. I’m no scientist so cannot vouch for credibility, reliability, or validity.
"Yes, NLY01 is a longer-lasting, brain-penetrant version of the diabetes drug exenatide:
NLY01
Exenatide
Type of drug
Glucagon-like peptide-1 (GLP-1) receptor agonist
GLP-1 receptor agonist
Purpose
Potential treatment for Parkinson's disease (PD)
Approved to treat type 2 diabetes
NLY01 is a pegylated analog of exenatide that's designed to better access the brain. Preclinical studies in mice have shown that NLY01 may protect against dopaminergic neuronal loss and motor dysfunction.
A phase 2 clinical trial of NLY01 in early, untreated PD found no significant difference in motor or non-motor symptoms between participants taking NLY01 and those taking placebo. However, there were some signs that NLY01 improved motor symptoms in younger participants. "
I'm a doctor myself and theres mounting evidence that the glucose-regulation mechanisms in the body have a great impact in many different aspects of our health, so it makes sense that they can also influence the brain, iSGLT-2 drugs are almost a miracle so im really hopefull about GLP-1 agonists. Wait and hope!
I follow a strict keto diet AND I take exenatide. It doesn't hurt me, but whether I am duplicating an effect (keeping blood sugar levels as low as possible, which I ultimately think is key) I don't know.
If nothing else, it's allowed me to cheat a little bit. Now I have fruit once in a while--something I really missed!
And I do think the GLP1 agonists may do other things. They are also studying tirzepatide, which, besides GLP1 is also a GIP agonist...and might have some other (confusing, to me) effects on the brain.
Suggestion: get yourself a continuous glucose monitor. Interesting to keep track!
Exanatides potentially beneficial effects in PD have nothing to do with glucose regulation. The same applies to other glp-1 receptor agonists like liraglutide, and other neurological conditions like Alzheimer's.
Do you think the Exenatide has helped your PD amykp?
I just use the urine sticks which indicate high levels of ketones every day. I will look into the glucose monitor but my carb intake is so low that I'm not sure I need it.
It's reassuring to know it's not just me that's confused about the effects! It's definitely something I will try and get my head around if it passes the trial.
I am a YOPD patient . I have been taking a exenatide weekly over a couple years now. Hard to say if its helping or not as i dont have continuous tremor. Mostly bradykenesia and tremor when i yawn or stretch. Facial tremor and in my lower jaw . That said , my movement disorders specialist who is also a clinical researcher at a major. Hospital system that all of us have heard of has stated to me multiple times that if your going to try something outside of traditional treatment. Routine exercise , exenatide, in addition to cl (started a couple years ago) maob (resageline) and a probiotic are still the least likely to cause side effects and most likely to slow proggression. Ive done keto and hate that quality of life. So intermittent fasting seems best with exenatide for me. Best of luck.
You are so lucky that you haven't started taking any pharma drugs yet. I belive they case me the misery today (rasagiline, levedopa for 8 years). Avoid Exenatide, and use peptide GLP 1 + ncl. at least one 0.2ml injection weekly. And it will be cheaper and last longer. In my personal experience it helps with stomach bloating and dyskenisia. Keto is a good diet choice. What is your current symptoms like?
Hi Bear, thanks for this. Where would I get GLP 1 +ncl? Is this prescribed by your GP?
I'm intending to stay off PD-specific drugs for as long as I can due to the side effects that I've read can occur after 5-10 years. I currently take propranolol for anxiety (which actually helps with the tremor).
My current symptoms are anxiety, a mild tremor in my left hand (which gets a lot worse with stress/anxiety/upset), rigidity in my left hand, and sometimes insomnia. Oh, and cogwheeling when I move my left arm above my head.
I actually quite enjoy keto - I like fatty foods especially cheese! I eat a lot of eggs, meat, fish, and limited berries, vegetables and salad. I don't usually feel as though I'm missing out.
I'm sorry to hear that your drugs have caused you problems. Did you start them early on in your PD?
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