Afternoon. Is anybody talking this in advance of the 2024 announcement of the phase 3 trial? Would it be wise/unwise to do so?
Thank You.
Exenitide : Afternoon. Is anybody talking... - Cure Parkinson's
Exenitide
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jeeves19
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I do. I asked my neurologist for it (Bydureon) and he prescribed it, seeing no harm in it. Indeed, I have not experienced any adverse effects so far (apart perhaps from a little loss of appetite, but no weight loss). On the other hand, I have not noticed any significant benefits either. But I have only been on it for about two months, so it may be early days. Unless some side effects show up, I might continue with it until the phase 3 results come out next year.
Nice one Ethin and good for you for thinking outside of the box. Maybe you could stop by occasionally over the next year and report back eh? Thanks for sharing mate.
Personally I think that it’s very difficult to measure Pd. You know, if you choose a particular sentence at the expense of another due to mood change it can be quite a big deal.
For 2 years I fueled myself with 2 mg of Bydureon per week. Ineffective. Meanwhile, I also took 1150 mg of Ambroxol per day. Also ineffective.
How do you define ineffective? In which ways did your PD get worse?
I lost my sense of smell in 2013. In 2017 my left hand started shaking. In 2019, diagnosis PD. 1 mg Rasagiline daily. End of 2021 3x100 mg Madopar. Meanwhile, between 20 and 22, Bydureon and Ambroxol for 2 years. A lot of money was thrown away.
So you are saying that your PD continued to progress at the same rate during 2020-22 that it had previously, and would have done so if you hadn't taken bydureon? Because you had to start Madopar during that period?
It will be interesting to see the phase 3 trial results. The field is littered with the corpses of failed phase3 for PD drugs, including (especially?) repurposed, but I'll risk a flutter this one achieves a clinically significant positive result. But chances are , long term, it will lose out to lixisenatide
I do not know. I'm tired of the weekly abdominal injekcion... Also the 16 capsules of Ambroxol a day. I walk about an hour a day and train with dumbbells and machines, and I also have a vibration plate, I take Mannitol, NAD+, and a thousand different vitamins. I'm not on any diet. I'm 60 years old, I work, That's it in a nutshell.
Yes. The abdominal injection doesn't appeal. My guess is Ambroxyl will be one of the Hoi-poloi. A bust. WTP rule that repurposed drugs requiring silly dosages relative to their original authorisation fail.
I prefer the gloves - although 4 hours is a HUGE commitment. 62 and working.
Had not yet heard about lixisenatide - but it sounds like it was trialled near you: cureparkinsons.org.uk/2023/... -- do you know anybody who participated?
I have a similar feeling re Ambroxol vs Exenatide, finding the results for the former not really convincing, but thinking/ hoping that the latter may slow progression, even though the biological mechanisms by which this could work are not yet fully clear.
No, I don't know anyone on the trial - but that report you linked looks promising
Ambroxol is meant for stopping in stead of reversing, if not getting worse is considered efffctive?
I'm sorry, but I don't understand your question!
Presumably not.
For 2 years he took Exanatide , Ambroxyl and presumably exercise, and one has to suppose nothing was working and his PD progressed. The problem with doing things simultaneously is its impossible to isolate one of them from the others.
Interestingly he started this before he joined the forum, since he joined less than 2 years ago.
I begun taking 5mcg Byetta injection once per week in 2019. It really worked well with first signs of Dyskinesia and made me feel better. At least for the first 3 days after injection. Be aware - it doesn't go well with alchohol, even 1 pint of beer. In the late 2021 it felt less effective and I stopped it and replaced it with Amantadine, which kind of worked well with episodes of Dyskinesia for a year. At some point I began taking it again in 2022 , as GLP1 peptide (an ingridient of Byetta Exenatide), and I felt much better, but this was probably due to combined efforts of eating well (evicting lectins from my diet and adhering to keto), exercising, using steam room and massages, and almost daily Thymosin A injections. I stopped taking it in February 2023, since I feel better and really wanted to relax a little bit 
and have some alchohol.
What's the symptoms you experienced with alcohol? I haven't noticed anything there, but then, I drink very little alcohol these days.
With Byetta it felt like my stomach stopped working, and it felt like my stomach was made of a stone. With GLP1 the reaction was less severe, but not pleasant. Even when I ocasionally have alchohol while on Thymosin A peptide, I feel that it affects my gut. It becomes heavy.
What’s the process for getting access to Exenatide in UK? Presumably if it’s still ‘off-label’ then it’s difficult on NHS unless you’re very lucky with your neurologist?
Yes, I’d agree with that
I am early onset PWP with tremor dominant left sided PD. Been taking exenatide for 2 years. weekly injections. I have progressed extremely slowly compared to my pwp friends not taking the med off label. tremor began in 2003. I believe it is having excellent effect in slowing progression HOWEVER, I also accident exercise pretty aggressively daily and take a large amount of supplements as well as 1 C/L per day and resageline and intermittent fast and modified keto so can't discount the overlapping effect. I wouldn't stop my routine with exenatide. 615$ for 4 weeks of injections is the typical self pay rate at the pharmacy.
Well spotted. Exanatide is being trialled as a drug to slow progression, not provide symptomatic relief or reversal.
and your point is..
I quote Kwisaz above
"For 2 years I fueled myself with 2 mg of Bydureon per week. Ineffective" -
-is that because he was looking for symptom relief. How , in a trial of one person, unblinded, do you have any idea how your disease would have progressed if you hadn't taken exanatide?
Exanatide is very expensive, I really had to "cut corners" in order to buy it. I think it does slow down the progression of PD. Try researching GLP1 peptide. Its price is about £100-130 for a monthly supply and you will not require any papework.
you can buy GLP 1 peptide without prescription
My off label of choice is Terazosin. No idea if it helps delay PD but helps a lot with urinary urgency! (and its cheap) Onward.
It is thought to slow progression, but it is expensive. People on this forum have said they think B1 slows progression and improves symptoms. How do you know if either slows progression without an extremely lengthy study ? B1 has definitely improved symptoms in many, significantly inhibits the inflammatory mediator IL-17 which is at elevated levels in PwP and other neurodegenerative diseases. B1 has an excellent safety profile while exenatide has many significant and serious side effects as listed here :
drugs.com/sfx/exenatide-sid...
Not everyone gets these side effects, but the possibility is definitely there. Some people get these side effects, but think it is part of the disease, not the drug. So reviewing the lengthy list of side effects may be worth a glance if you are taking Exenatide or plan to take it.
Insufficient thiamine in the brain causes neuroinflammation which is damaging to brain cells and could contribute to disease progression, so if you reduce that neuroinflammation you are very likely slowing disease progression.
If you were to actually slow disease progression, you probably would not notice any change in terms of symptom improvements.
I am not impressed with the potential of Exenatide to slow disease progression versus its potential side effects. Up to 19% of users develop hypoglycemia. Up to 15% get increased heart rate, up to 10% get UTIs, up to 34% get nausea, up to 19% have vomiting, up to 10% get erectile dysfunction, up to 10% get joint pain, back pain and muscle spasms, up to 10% get headache, dizziness and muscle spasms, up to 17% get upper respiratory tract infections and up to 10% get influenza, cough and sinusitis and lastly, up to 10% get fatigue or feeling jittery and now they are finding out that thrombocytopenia is being seen in users.
Many of the side effects that I didn't mention are seen in people with PD, so how will you know if it is the drug or the disease that is causing it?
Exenatide is not a cure, so it would likely fall into the category of improving quality of life. If you run into any of the well over 70 potential side effects that this drug has to offer, I don't think you are going to feel like your quality of life is being improved.
Imo, the potential benefit is dwarfed by the many potential side effects. The potential benefit does not seem to be worth the risk. I am not trying to dash people's hopes, but this does not seem like a good deal to me.
Art
But as far as I can tell Art, B1 never did anything for me🤔
He does that with every prescription medication - hyper-focused on all of the reported side effects (which the manufacturers are required to report, whether actually caused by the treatment or not), whilst simply assuming that 'natural' treatments like thiamine do all these wonderfully things that haven't been meaningfully demonstrated. The only thing thiamine has been proven at doing successfully is hype, which is down to Dr C and his colleagues making all sorts of grand promises that have been subsequently comprehensively debunked.
Easy shots to fire when you've not actually got PD, in my mind.
Well if it is slowing the progression, which exenatide is supposed to do, you wouldn't know it. I just don't think the potential benefit of Exenatide is worth the risk of the potential side effects. You can always try it when / if it comes available for this purpose, but again, how will you know if it is slowing disease progression? Give the full list of side effects a look and then decide.
Art
You can always try it when / if it comes available for this purpose, but again, how will you know if it is slowing disease progression?
Because it will have been demonstrated in a phase 3 study at that point? Surely even you can acknowledge this is better evidence than "people on this forum have said they think", which is apparently all the evidence you need to think thiamine slows progression?
Hi Art, thanks for sharing your concerns. Main side effect my neurologist is concerned with is weight loss, other side effects are pretty rare from what I understand. If they do appear, then you simply stop taking the medication and the will stop.
I had zero symptoms, and so far very little progression on my UPDRS scale over the last 18 months as well as on the PRO-PD app, which I also use for tracking.
You'll probably know the Phase 2 results better than me but from memory, around 30 people on placebo worsened by an average of 3-4 points on the UPDRS scale over a 12 month period. For the group of 30 on the real drug, their disease progression (as measured by UPDRS) stabilised for 12 months i.e. their symptoms stopped getting worse.
Only a small scale study, but it was double-blind, so none of the participants knew if they were getting the real drug or not, so no placebo effect.
Guess we'll find out in a year or so when the current Phase 3 study completes. Fingers crossed the promising results bear out...
I'm in same boat as Ethin, been on it abt 18 months but having to see my neurologist in UK privately, as not currently on NHS approved list for PD. Feel the Phase 2 results were strong enough to justify taking I.e. known risks vs potential benefits.
Also tracking UPDRS for measures as well as using the PRO-PD tracking app, which is excellent btw.
Prescription cost about £270 for 12 week supply, but shop around as I had some local chemists quote £300-£330 for same prescription.
Hi MarkBeen taking liraglutide for a year. Three years since PD diagnosis. Cautiously optimistic however difficult to source the liraglutide for 'weight loss' Did you say you know of a neurologist who prescribes privately?
Cheers ian
I'm seeing Dr. Ed Newman at Ross Hall Clinic, Glasgow. If you are London-based, you might be able to get a private appointment with Tom Foltyne, who is leading the Exenatide Phase 3 study. I understand he prescribes privately, but not sure where he operates from.
Hi Mark. Sorry re. Earlier. Does your consultant in Glasgow prescribe exanatide or liraglutide?Cheers ian
