I was just prescribed Exenatide by my neurologist. He has faith in the Exenatide trial and has prescribed it to other patients as well. I’m slim with low blood sugar.
Can those who are not diabetic but taking Exenatide please share their experience and knowledge? And any info from those taking it for diabetes would be greatly appreciated as well. I wonder if anyone is taking both Ambroxol and Exenatide?
Now this is exciting! Great luck to you!
It is? I’m nervous about it. Thank you for your support.
All sorts of things are exciting. Let me look into this Exenatide again.
Professor Tom Foltynie - The Bydureon (exenatide) phase lll trial 2019
This has a trial participant in it: Does Exenatide Reduce Non-motor Symptoms in Parkinson's? - Live Webinar Recording
Great news at 7:45
Indeed. We shall see. I hope I can tolerate it.
ccl,
It might be useful if you are also taking melatonin along with it, on the outside chance that you run into the pancreatitis issue, the melatonin should help protect and recover.
accessdata.fda.gov/drugsatf...
pubmed.ncbi.nlm.nih.gov/242...
Melatonin should also be useful against some of the other warnings that they list on that page, such as acute kidney injury. I'm not trying to scare you, but I would like you to be as prepared as possible if you run into any complications with it. Here is a list of signs and symptoms of pancreatitis :
mayoclinic.org/diseases-con...
Melatonin and acute kidney injury :
pubmed.ncbi.nlm.nih.gov/341...
Art
Thank you Art! Goodness, melatonin is amazing. I’m up to 20 mg a night. I have some reservations about it bc it’s a hormone but I think that my reservations are based on emotions and not so much facts.
ccl,
Even if you choose not to use it at some point, I think it may be a good idea to keep it on hand while you are testing Exenatide and also to hit Covid-19 hard and fast at the first sign of symptoms, vaccinated or not. I think a little extra caution in this case is not a bad thing. 👍
Art
It’s very exciting! You must have a decent neurologist.Let us know how it goes.
wishing you the best CC, saying a prayer that it really works well for you; looks like we won't know the results of the current trial until 2024, are you a participant in it? (PS - it has a weight loss common side effect that may be something you should monitor).
clinicaltrials.gov/ct2/show...
Other interesting reads for those doing due dligence:
pubmed.ncbi.nlm.nih.gov/237...
thelancet.com/journals/lanc...
journals.lww.com/neurotoday...
finance.yahoo.com/news/bydu...
Thank you. I am not a participant in the current trial. I was accepted but did not proceed for various reasons. The neuro who prescribed me Exenatide does not know I almost was in the trial for it so that had no influence on his prescribing it.
CC,
Did your neurologist suggest it or did you ask him to prescribe it for you? When I asked hubby's MDS for any disease-modifying meds, he was negative.
I asked him if he had an opinion about repurposed drugs and he brought up Exenatide. He said that he “has a lot of faith in the Exenatide trial.” He was familiar with the mannitol and referenced the study in Israel. I was so pleasantly surprised by his knowledge. He supports my taking Ambroxol although he can not prescribe it.
I love these kinds of neurologists! 
Ambroxol is not a prescription drug. Have you found a source/supplier for Ambroxol? It is available on line (Amazon), but it's 30mg rather than a higher dose. If you have an Amazon account, go Amazonde.com. They have 75mg available. You can order it from Amazonde using your current US credentials. I have ordered other items from Amazonde without any problems.
Restating for emphasis, the neuro said he has a lot of faith in the Exenatide TRIAL. He respects those conducting it and how it is being conducted and has spoken with them directly. He then stated facts about Exenatide. I am clarifying this since someone has taken my verbiage and twisted it in to poohpooing “faith.” and insinuated my respected neuro is a “faith healer.” He is from a very well respected University in the north east.
I trust his judgement.
I must admit CC, I was not aware of some of these cautions from my earlier due diligence (you probably know them, as the trial application information you received originally probably covered them):
Avoid driving and doing other tasks or actions that call for you to be alert until you see how this drug affects you. Do not drive if your blood sugar has been low. There is a greater chance of you having a crash. It may be harder to control blood sugar during times of stress such as fever, infection, injury, or surgery...
This drug may prevent other drugs taken by mouth from getting into the body. If you take other drugs by mouth, you may need to take them at some other time than this drug.
Kidney problems have happened with this drug. Some people have needed dialysis or a kidney transplant.
If you cannot drink liquids by mouth or if you have upset stomach, throwing up, or diarrhea that does not go away; you need to avoid getting dehydrated...Dehydration may lead to new or worse kidney problems.
Very bad skin problems have happened where the shot was given. Sometimes surgery was needed for these skin problems.
WARNING/CAUTION: Even though it may be rare, some people may have very bad and sometimes deadly side effects....
Signs of an allergic reaction, like rash; hives; itching; red, swollen, blistered, or peeling skin with or without fever; wheezing; tightness in the chest or throat; trouble breathing, swallowing, or talking; unusual hoarseness; or swelling of the mouth, face, lips, tongue, or throat.
Signs of kidney problems like unable to pass urine, change in how much urine is passed, blood in the urine, or a big weight gain.
Signs of gallbladder problems like pain in the upper right belly area, right shoulder area, or between the shoulder blades; yellow skin or eyes; fever with chills; bloating; or very upset stomach or throwing up.
Dizziness or passing out.
Area that feels hard, blisters, dark scab, lumps, open wound, pain, swelling, or other very bad skin irritation where the shot was given.
Low blood sugar can happen. The chance may be raised when this drug is used with other drugs for diabetes. Signs may be dizziness, headache, feeling sleepy or weak, shaking, fast heartbeat, confusion, hunger, or sweating...
Low platelet counts and severe bleeding have rarely happened with this drug. Sometimes, severe bleeding may be deadly...
Severe and sometimes deadly pancreas problems (pancreatitis) have happened with this drug. Call your doctor right away if you have severe stomach pain, severe back pain, or severe upset stomach or throwing up....
mskcc.org/cancer-care/patie...
I'm sure your neuro has offered to monitor your progress closely, I know I would want that in this case.
Yes, it could potentially be dreadful. But PD is most definitely dreadful.
having a father with stage 5 PD has given me a greater willingness to do almost anything to slow it.
All that you listed above most certainly gives me trepidation and some PD amplified anxiety, fear and depression.
For perspective, read the side effects of even over the counter meds. They can be horrifying but the chance of these horrifying side effects is typically low.
For example, I was using an over the counter topical scalp treatment that can cause a change in your heart rate.
Detrimental side effects of Exenatide are a very real possibility.
Detrimental effects of PD are a definite.
To hopefully reduce one problem I’m likely creating another. But I’m desperate.
Totally understand and I'm with you. My grandmother died slowly from PDD over many years, and I watched it as a kid, it was horrifying. We have better medications now to prevent that ending, but nevertheless I will also take most any risk to prevent that ending. Also agree that even aspirin can have serious side effects.
Hi DHPSR. I am researching metformin for PD specifically how it works or doesn’t in the absence of insulin resistance. As I know you research in depth, if you have thoughts on this?
found conflicting 2017 research data on metformin as below, not sure if fully resolved or not, but suggests metformin may (or may not) be problematic as a treatment option:
"After following a total of 9,300 patients with type 2 diabetes for 12 years, Taiwanese researchers at Taipei Medical University found that long-term metformin increased the risk of both Parkinson’s and Alzheimer’s disease."
"not too long ago, a 6,000-patient study of metformin’s cognitive effects, conducted at Tulane University, found the opposite – that the longer a patient used metformin, the lower the chances of developing cognitive impairment."
"In light of these seemingly conflicting findings, further large scale studies are now needed to give a clear answer as to whether metformin really helps or not.
The findings were presented at the 13th International Conference on Alzheimer’s and Parkinson’s Diseases."
diabetes.co.uk/news/2017/ap...
If this 2017 divided cognitive view on metformin is still where the research on it currently stands, metformin is not a risk I would take given its potential to accelerate one with PD toward PDD, even if it "is able to restore normal levels of mitochondrial respiration and rescue neuronal viability" and thereby "improve motor function in bcat-1(RNAi) worms". Unless I am missing some material new research here (which I could be), improved motor function is just not worth the cognitive risk.
Isnt it several thousand $$ a month?
I sure hope not. I’m picking it up tomorrow. If I start it, it won’t be until after my GP appointment
Insurance should cover it, no?
USA drug pricing confuses me but the bcsize pen should be about $200 per week.I note the neuro has faith in exanatide. If only PD responded to faith. Still faith healers are popular with many.
This is interesting to me too. Please keep us updated on any results you might experience. Thanks!
[cut-and-paste]
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 since 2010 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 getting Bydureon.
cureparkinsons.org.uk/news/...
[snip]
I was on Exenatide (Bydureon -- once a week) for five years for Type 2 diabetes before I went into remission. I should really get serious about finding a doctor to prescribe it instead of waiting for 2024 trial results.
Would not worry about pancreatitis. When I was on it when it was new, there were 400,000 patients -- 7 cases of pancreatitis (they did not know if that was 7 more) -- none fatal.
Lost 50 pounds in 50 weeks without effort -- unfortunately had another 50 pounds to go at that point.
Thank you Patrickk! I hope you do find a neuro to prescribe it!
When you went into remission had you done anything differently like diet or exercise? I’m just wondering because if losing weight, exercise, and eating a diabetic diet could naturally put someone in remission then would following that lifestyle have the same effects on PD without the drug?
I don't know why that lifestyle would have any effect on PD. Getting Bydureon (once a week Exenatide) prescribed by hook or by crook would seem to be the way to go. All trials so far, mice, first stage, second stage have proved spectacularly successful in stopping progression.
That's one interpretation. This is another, by Simon of science of parkinson's
Well, actually,…
Of the trial participants who were randomly assigned to the exenatide treatment group, only 45% (14/32) of the subjects had an improvement of their motor score (according to the MDS-UPDRS Part 3) of at least 3.25 points at the 48 weeks time point. These individuals were classified as “high responders”.
But some of the other participants in the exenatide treatment group had little or no response to exenatide. That is to say, the drug had no measureable effect on those individuals.
And why, if the drug stops progression did the motor scores improve before stabilising? And why were non-motor scores unaffected? (this was a major disappointment for Tom Foltnie initially (2017).
Exanatide is the leading hope at the moment. (faith is another matter). I hope the phase 3 trial demonstrates an unambiguous positive outcome. Unlike the phase 3 trials of the other repurposed drugs selected by the same methodology. Isradipine, simvastatin, defrerapine
The purpose of a phase 3 trial is to prove (hopefully) the efficacy of the new drug. Not to gratuitously delay a sure fire bet from being available to pwp
Improvement in non-motor scores could be just some dopamine producing cell rescued before they go over the falls. No improvement in some non-motor scores could accompanied no progression or some improvement in motor scores -- off the top of my head.
This is an extract from a paper by Dr Athauda, who was a central member of the trial team in 2017.
It might be worth reading this paper and the official trial report before claiming
" All trials so far, mice, first stage, second stage have proved spectacularly successful in stopping progression."
In support of this type of symptomatic mechanism of action, the exenatide trials have indicated that clinical effects are detectable within the first 12 weeks of treatment. It is hard to imagine that this early acute effect relates to slowing down of a neurodegenerative process when the typical rate of progression in PD is approximately only 3 UPDRS points per year. Furthermore, the magnitude of the difference between exenatide and placebo groups was greater during the period of continued exposure than 12 weeks after exenatide withdrawal. Therefore exenatide seems to have at least some symptomatic effect in PD, although this might require concomitant L-Dopa therapy.
content.iospress.com/articl...
I really wish I better understood this. So Exenatide might just have a symptomatic effect and not slowing of degeneration? “Might require concomitant L-Dopa therapy.” Does that mean that the Exenatide might not be effective if not on CL? The trial I was pursuing requires that you not be on CL or any other PD meds.
It means the results weren't what they expected, even though they were good to the extent the primary outcome was reached. It means they don't really understand HOW it works, if it works.
It means there appears to be a symptomatic effect - and maybe the only effect is symptomatic. They need to do a bigger and better test to find the answers. Like your neurologist, I have faith that they are going to do an appropriate test, and it will reliably know whether it has a disease modifying effect in a couple of years time.
The symptomatic benefit might be an interaction with L-dopa therapy - the small phase 2 trial membership was all people at a more advanced stage than either of us who were all on L-dopa. They chose that group because at that stage of the disease responses to "inputs" are more obvious and easy to measure than they are in the early stage of the disease.
It doesn't necessarily mean the disease modifying effect needs L-dopa supplementation.
It doesn't necessarily mean the only effect is symptomatic (indeed the reason they are doing a phase 3 is because there is a very good chance there is a disease modifying benefit - for some people)
Note - more than half of the group who received Exanatide had no statistically significant result from Exanatide.
What is your other trial? How will it know whether any change in your symptoms is due to it's drug or exanatide?
I’m not in a different trial. I tried to get in to an Exenatide trial. I was accepted. I opted not to proceed bc of the incompetence of the man running the location. (He literally thought it was 2025 and put it in writing.) The neuro who prescribed Exenatide does not know I was almost in a trial for it. Did not come up.
What is your opinion of Ambroxol?
Do you think Azilect might be neuro protective?
Thank you for all of your research and sharing this Exenatide info
I replied to you about Ambroxol in the post mentioning Doxazosin.
Azilect was proposed to me by my first neurologist when I said I didn't just want dopamine supplementation. I wanted something to slow or stop the progression. It's a bit confusing. There were research papers around the millenium suggesting it might be neuroprotective. Then there were trials showed it wasn't (They tried for an FDA licence around 2010 - and the trial failed). It was thought to be particularly effective potentially combined with Isradipine. Then that was shown to be another false hope. I think there has been a more recent post-hoc review suggesting it might be neuroprotective again. I think it's of too little benefit to consider. I wouldn't take Rasagaline for the neuroprotective effect alone. If it were the appropriate drug recommended by a neuro for its dopamine management effect, then any marginal neuroprotection would be a handy bonus
For now, I'm OK with exercise, red lights, and Doxazosin - and will be interested to see the results of the exanatide trial. I am fortunate in respect to that drug in that I am still a little overweight, have blood pressure which is naturally high, and controlled by medication, high blood sugar, and the digestive constitution of a Yak. But I can wait a couple of years...
I did not know or perhaps remember that you’re not on Pd meds. Thank you for explaining your thoughts
I may have confused with my language. I take one conventional PD medication which is 1mg pramipexole extended release once a day. I've been on that for about a year and my neuro was very surprised at how unchanged my PD symptoms were over the course of the year - (when I was taking doxazosin).I am of the opinion that I can't take everything which comes along and might help, whether drug or supplements. So, for the record I take exercise,the red lights, doxazosin, pramipexole, vitamin C vitamin D, a vitamin B complex, turmeric, blood pressure and hay-fever tablets and occasional macuna - and THAT is enough for me for now.
Good morning from the UK!
Reading your posts on exenatide are really helpful, thank you!
Hope this isn’t a stupid question, but what are the red lights all about ?
Thank you !
If you go to "Posts" and search for "red lights" in Cure Parkinsons you'll find lots of information. It's known as photobiomodulation. This post of mine tells you a bit
healthunlocked.com/cure-par...
Thank you very much!
Really appreciate you taking the time to send this through.
For the no PD med trial you are pursuing: have you discussed (or plan to discuss) the use of ambroxol and/or exanatide with them?
I pursued a trial months ago before starting Ambroxol
Don't get me wrong. I have exanatide listed at the top of my PD hopefuls when asked by cc lemonade. I participated in the post phase 2 webinar meeting and had questions answered by Dr Foltnie.But it has shown exciting promise that it might help some but not all pwp, based on a short small phase 2 with selection criteria which were not optimal and, in Dr Athaudas own words "these results NEED to be confirmed in a larger phase 3 trial before there is clear evidence of a useful disease modifying effect."
In your exchange with Dr. Foltnie was who it may help versus not help discussed? Different stages, genetics, etc?
May I ask your opinion of Ambroxol vs Exenatide? Are you also inclined to dissuade someone from Ambroxol?
From the sopd article on the post hoc analysis:
An analysis of the clinical characteristics of the participants at the start (or the ‘baseline’) of the study suggested that the “High responders” were:
- Slightly younger than the rest of the participants
- Tremor-dominant (as opposed to akinetic/rigidity-dominant)
- Had no postural instability (versus 30% in the low-responders)
- No speech difficulties (versus 35% in the low-responders)
- Had disease duration of less than 10 years
Interestingly, there were also suggestions in the results that participants who had insulin resistance or were obese at baseline had better outcomes on Exenatide with regards to their cognitive ability (but this was not statistically significant).
Now after reading these results, it is important to remember that the analysis was conducted on small numbers of participants (for example only 5 people in the Exenatide treatment group were considered tremor-dominant). And the researchers have stressed throughout the report that these new results are based on a post hoc analysis, which in no way should be interpreted as evidence of efficacy (irrespective of any statistical threshold). This type of analysis is only conducted for hypothesis generating purposes (especially on such a small sample of participants – just 32 people treated with Exenatide).
Thank you for the info. I fit the description of the “high responders”
If “tremor dominant” was only 5 participants, I wonder how many fit the description of the high responders group. It had to be less than 5.
32 total, such a small trial that asking for personal accounts not associated with the trial is all the more important.
Do you have thoughts / knowledge on metformin?
My questions were about the blood sugar effect, and whether he would, off the record, advise I try and get it off-label. I said in spite of their cautious official responses the pair of them looked like the cat that had got the cream. Tom Foltnies response was that he was not a clinician and could not advise. The cat / cream smirk implied he would be inclined to give it a go - subject to appropriate medical supervision.
Kevowpd has provided as good an answer as you'll get to the next question. The sample was too small to be sure
Regarding Ambroxol - I wasn't trying to dissuade you from Exanatide - just to address some of the hyperbole and suggest a more realistic appreciation of its potential benefits - which may turn out to be nothing for many. I don't really know about Ambroxol - but the potentially effective doses seemed stratospheric compared with its original application, and in my limited experience of repurposed drugs thats a red flag (I am effectively taking Doxazosin off label)
I would note that I have to be careful not to burn my bald head here in the South of France. There are a number of effective strategies. Sometimes its cloudy outside. I can stay inside. I can stay in the shade. I can use factor 30 suncream. I can wear my England rugby baseball cap. I can wear my Tilly hat. Each one of these has been shown to protect me from burning my bald scalp. I look pretty stupid with factor 30 suncream on wearing my baseball cap and Tilly hat , sitting under the shade of a pot plant, indoors on a rainy day.
“Doxazosin off label.” For PD? To what effect?
Doxazosin is another alpha blocker which is a pgk1 inhibitor - like terrazosin
ajmc.com/view/common-prosta...
I went to see my French GP - who won't prescribe off-label, but is otherwise very flexible, and got a urology referral. The urologist confirmed a prostate problem, and I persuaded him to switch me from Flomax to a pgk1 inhibiting alpha-blocker, and have managed to dodge the follow up appointment (because they would want to do surgery instead). And now my GP just issues a repeat prescription every 3 months
😉
I wish I had a prostate in need of Terazosin or doxazosin. My new neuro mentioned the prostrate med.
Brings back a happy memory of my dad. My niece, Daisy, is a bit of a dizzy blonde, was very close to her grandad and shared a giggly silly sense of humour with him. At his funeral, her entry in his eulogy was about watching a documentary about prostate cancer surgery, and asking anxiously "grandad, I won't have to have my prostate removed will I?" when grandad explained why he could be sure she wouldn't they both cried laughing 😂
To what effect? - I posted this recently
healthunlocked.com/cure-par...
It's looked at for it's potential to slow progress so I wouldn't expect reported symptom relief. Indeed chances are that would be a placebo effect. Disease progress is hard to assess individually, but my neurologist recently was astonished at the slow progression of my disease. I started doxazosin 4mg a couple of years ago.
Very good to hear that. Thank you for the link
Edited:
Hi Patrick, remember me? We had the same conversation last year. Following your advice and losing weight and my A1C dropped two points to below 7. On my way to the 5’s and reducing my medication, including Trulicity at the lowest dosage after Bydureon proved to be too potent for me!
Like you I have also been on the drug for a long time and saw no results. In fact, I got Parkinson’s while I was on it. Losing weight is and was the key for me I would hate to speculate that Bydureon/ Exenatide is responsible for the disease symptoms management in Parkinson’s patients as advertised.
However , I do see it having strong correlation between my blood sugars and the severity of my Parkinson’s tremors. Sugars below 100, I feel good. Above 125, absolutely miserable. I feel very guilty on those days and blame myself for perhaps bringing upon the Parkinson’s on myself.
Who knows what Bydureon does for Parkinson’s, I know that it does do a lot for diabetes. I get the feeling that Parkinson’s is a two pronged disease like diabetes? Type 1 and Type 2? I am concerned that someone like cclemonade might get the short end of the stick and possibly get harmed by it. My MDS won’t even open up a conversation about it. He said that it was between my endocrinologist and me!
RKM
biospace.com/article/recent...
"Eli Lilly will have more of a challenge because its own GLP-1, Trulicity, does not cross the blood-brain barrier like Bydureon or Victoza, so getting it to be applicable to the Parkinson’s market could be more of a challenge. "
I knew I read this someplace. 😀
“PD insulin signaling pathway problems” could explain why ketosis helps the PD brain. I would think it’s not neuro protective then but symptomatic. Good article in laymen terms
A couple of points about that article. Sanofi do not make exanatide - Astra Zeneca manufacture bydureon.
Trulicity may struggle to cross the blood brain barrier but lixisenatide (which is the glp1 receptor agonist made by Sanofi) is better at crossing the bbb than exanatide, and is in clinical trials for PD in France
Ditto liraglutide
Whilst "nobody knows" (to quote my favourite quiz show QI) Dr's Athauda and Foltnie I am pretty sure do not think insulin signalling is the mechanism of action for exanatide in PD.
My favourite video at 6.09 explains the glp1 receptor on neurons which they think is the mechanism AND at7. 01 the 4 properties of neurotropic , neurogenesis, anti-inflammatory and mitochondrial benefits
I'm near certain these doctors think it's disease modifying and not just symptomatic. They have a trial under way which could prove it
I did not know that the French trial is not Exenatide. If lixisinetide is better at crossing the BBB and that is readily known, why even pursue Exenatide? I don’t understand. Is France the only place Lixisinetide is being trialed? Maybe I should ask for it instead? I believe based on what they say and write that the researchers believe Exenatide to be more than just symptomatic treatment.
They are different molecules
Exanatide is C184H282N50O60S
Lixisenatide is C215H347N61O65S
Liraglutide is C172H265N43O51
Different drugs from different manufacturers
The French trial is lixisenatide
The USA trial is liraglutide
The UK trial is exanatide
The French and USA trials are phase 2. The UK trial is phase 3. So Exanatide is going to be the first if that trial is successful
The justification./ context section of the trial gives a good explanation
clinicaltrials.gov/ct2/show...
France is the only place I am aware of a trial of lixisenatide. To some extent my last post was fishing for an update. I would be interested in participating in the phase 3 trial, if there is one.
Lixisenatide is FDA approved and sold in the USA under the brand name Adlyxin so your neurologist could prescribe that off label if he chose to. Its a daily injection costing about $600 a month I believe so more affordable than exanatide
Do you mind if I ask what are you paying for it? Does your insurance cover it off label?
I will gladly share the cost as soon as I find out. I’m still waiting for it.
I am pretty sure the researchers think there is a decent chance that exanatide is disease modifying and not just symptomatic. They wouldn't be investing so much in a phase 3 trial if they didn't. But they wouldn't be the first to be mistaken in their hopes. Not by a long way.
Why even bother with exanatide? It's 2 years closer to approval. The others might not work.
I repeat what I have said a few times. This is not a sure thing formality to delay you and I getting a really valuable treatment that definitely works. It might not.
Thank you and thank you for your patience with me. The whole subject increases my anxiety which reduces my comprehension ability.
I am going to revisit metformin as a possibility or alternative if you or any other wise participant have thoughts and info on that.
I’m not keen on being a lab mouse
No worries. Try to relax. Nobody wants this rubbish disease and nobody knows which variation of the snowflake they'll get. I was as intense as you at the start but I'm much happier now I have eased off. As I posted before from corporal jones of dad's army "don't panic"And I think it's Condor says "I have parkinson's disease. But parkinson's disease does not have me" . Remember to be cc lemonade (Christine I think?) and not a full time parkinson's professional patient.
I have another cycle trip with Damian planned for Thursday 😊
Hidden - you may find this interesting. sciencedirect.com/science/a...
Thank youJust read it and it went over my head
I will read it again and share it with my husband
cc Ive been taking Metformin for type 2 diabetes since 2017. It does nothing for my PD.
I’m concerned too. The neuro said he “has faith” in thr professionalism of how the Uk trial is being conducted. And he has spoken with the doctors involved in it. There is risk in taking it of course but does said risk exceed the known downfall of PD?
Yes cclemonade, unless proven otherwise, the risk is quite great for anyone and especially someone who gets low blood sugars on its own. Read the list of side effects and it is the number 1 reason that I tried very hard to come off it.
Trulicity is not much better, but a lot less potent and far less invasive as Patricck so eloquently points out. He is right. My endocrinologist was suggesting that I continue with Bydureon or upgrade to Ozempic. I told her that I was more conservative than she gave me credit for
From a layman’s perspective, I think that you should run this by another doctor or at least ask for the Doctor’s “chart notes “ for that visit. You would be amazed by what they write about your visit and it is all done to protect themselves. I would be happy to bet that it says I prescribed it to the patient upon her request for trialing a medication that she felt might be of value to her “
RKM
If the drug has been prescribed by a qualified md who will be closely monitoring it, then your primary risk is to your purse. And if your insurance covers off-label drugs then that risk is negligible.Providing you appreciate that the trial may establish the drug doesn't do what you hope it does.
This was Dr Athauda s advice
"We would argue that currently the relative pros and cons of starting exenatide requires individual patient discussions that must include an evaluation of their existing symptom control and its rate of progression, their weight, their comorbidity (particularly gastrointestinal symptoms) and the availability of appropriately skilled and motivated team to support this course of action, as well as the availability of properly regulated randomized trials of this agent."
In 2017 I was trying to get isradipine prescribed for my marginally high blood pressure. After a 3 year full scale multi centre clinical trial which went the whole term, they concluded no benefit.
Exanatide has great promise. To read some comments on this thread you could be forgiven for thinking it was slam dunk the cure.
"All trials so far, mice, first stage, second stage have proved spectacularly successful in stopping progression." would be an example of such hyperbole.
RKM, have you used metformin?
Yes. I am still taking it. Why do you ask?
I was surprised that months ago a doctor offered to prescribe it for me for PD. I was not familiar with it at the time. I declined at the time but am revisiting the subject. I have been researching it tonight and I fail to see how it would benefit me since insulin is not a problem for me.
Do I understand you correctly, you took Exenatide for several years before PD diagnosis. Can you establish any benefit in taking.
Thanks
I was taking it for Type 2 diabetes -- it is a repurposed drug; thoroughly tested for safety, probably by millions. Different versions of the same treatment are advertised on television -- most say you may even lose a little weight.
1990 was first trial I believe -- on mice. Then open label on 60 people for one year -- then double blind on 60 for one year -- now on 200 for two years. Stopped progression on any subject taking Exenatide (a.k.a. Bydureon).
I went into remission of Type 2 diabetes after five years on the drug -- a few years ago.
Hi. Just to let you know I have been taking bydurion once a week since January without any problems. Have no fear. I feel great and my PD symptoms are much better. I no longer have on and off times with sinemet and I now only take it on weekdays ( it still improves the rigidity on my left side but I can cope with that on the weekends without trouble). I will see my neuro next week and we will decide if we will reduce it overall.
Thank you for sharing your experience. Improvement since January, that is so wonderful! Were you prescribed it off label?
Yes. It was off label
How long have you had PD? Thank you
I think you are really lucky to have such a forward thinking neurologist. Please share with us if it helps! Thanks
This is so exciting! We are all rooting for you and for the hope it can help many more! Good luck Christine!
I am in that trial and have no side effects. There is a 33% chance I have the placebo. My blood sugar was 95 ish at the start and hasn’t changed. Did your doctor prescribe a time release version and what doseage?
Have you noticed any improvment?
Honestly, no. Having said that, since being diagnosed in January, I have started B1, the Exenatide trial and Terazosin as well as a few supplements. I feel generally better but I can’t attribute it to the Exenatide. It may be slowing progression but definitely not a game changer from a symptom perspective. Maybe I am getting the placebo, I think I’ll know in February.
Not supposed to reverse symptoms you already have -- possibly a little -- just supposed to stop progression.
Were you on the Placebo? Thanks
I am done with the trial and am told that the sponsor of the trial is having financial problems and postponed the “open” segment of the trial until at least January. I have not been told what I was receiving. Having said that, for the 2-3 months after I stopped the trial drug my symptoms for worse rapidly—mainly tremors. Maybe coincidence, I don’t know. I’d sure like to be on it still.
Wow, I think that is awesome! GOOD LUCK! I plan to start it too. The thing is, if there was a better choice on the market, maybe I wouldn't ... but there isn't.
I'm taking Ambroxol now, quite a high dose, (1400mg/day) so I thought I should wait a few months and see how that pans out. I'll mix them, but in the name of N=1 research, not quite yet.
I thought I posted in a few threads here but maybe not enough--with the help of a pharmacist cousin we found a source for purified Ambroxol. We ordered a kilo and put it in capsules ourselves. The powder is quite dense, so one reasonable, easy-to-swallow capsule holds 700mg. (The largest available pill holds 75mg!)
The kilo (enough for a couple years) cost a few hundred dollars, shipping included. Anyone who wishes the contact info, please PM me!
PS--I have a GBA mutation, so Ambroxol makes a LOT of sense for me. YMMV :o)
That seems interesting. What does "purified" mean in this context?
Sorry, should probably have just said "pure"... ambroxol hydrochloride, as it happens. The stuff in the 75mg capsules is cut with lactose. I don't know about the tablets, but each one weighs a lot more than the 60 (or 30) mg of active ingredient listed on the package.
I'm not implying there's anything bad in them--just binders and whatnot to get them to BE tablets. The end result is that, in order to get over a gram of drug, you have to swallow a lot of pills.
I found myself sick and tired of it, was all. Plus, it was expensive!
That was quite a find. I can't take ambroxol while I am in this clinical trial but when I am done I will hit you up!
Hi cclemonade. I honestly think that it was irresponsible of Doctor/MDS to prescribe a highly targeted, powerful medicine which is used for diabetes patients with a history of high blood sugars over at least 5 years prior.
That being said, patients such as you are particularly vulnerable because it can cause low blood sugars, especially when combined with other meds. It’s main method of action is by restricting gut motility or in other words, slowing the passage of food through the digestive system. There’s other modes of action as well, which is beyond my “pay grade “ to address or explain.
I can’t advise you either way, but I think (but I am not sure) that it still carries a “black box” label.
RKM
It is most likely those other things GLP-1 agonists do--not gut motility--that affect Parkinson's.
What is important, if you are going to try something like exenatide, is that you understand the risks and keep an eye out for problems...but that's not impossible. For example, low blood sugar is not much of a issue for most people, and if it is, why then, buy a monitor!
But the main point is, what is the alternative? If they had something better I'd be all for it, but they don't. And you can be sure this won't be approved for years. How long do you have to wait?
:o(
Hi cclemonade, I have been taking Bydureon off label for the last 2 and a bit years.(diagnosed nearly 6 years ago). I have had no ill effects at all. It is definitely not a cure, but I feel that progression has been reasonably slow.
Are you still taking. How are you?
Yes I am still taking it although I have had a break for a month recently as I have had surgery, Will start again soon.The only thing I can say again it is that it is not a cure, but progression is reasonably slow.I will be 6 years diagnosed at Christmas and I still function totally normally taking fairly low dose of Madopar, 200mg Amantadine and a neuro patch.
Good luck cclemonade.
Has anyone tried buying Exenatide on the dark web?
Please don't ever attempt to buy medicine on the dark Web.
Hidden , best of luck with your trial. I think people have given some excellent advise here. In terms of risk, there is always a risk with medication. Even if it gets approved, that risk will still be there. The trial is only on 200 ppl. But as you said, the risk of parkinson getting worse is 100% if you do nothing. Personally I think exenatide is our best short term hope. I dont care if its symptomatic or stops progression.. symptomatic with no side effects would be an absolute game changer. Like most medication, it'll work for some and not for others. Hopefully it works for you.
I take Exenatide and have been for 6 months . not Diabetic , thin exercise daily. No major side effects . Have ambrosial but haven't started it. Anyone taking both?
Best price for cash pay patient I have been able to get is $467 for for infection Cartridges . Walmart neighborhood market with good rX and discount available from AstraZeneca
Have your symptoms improved while taking Exenatide? Thank you 😊
Well my medication has not changed. I still take Azilect and one half of a carbidopa levodopa twice a day. I believe that cognitive is improved. can't say its a obvious difference. also take Mannitol and that helped tremor and smell considerably by month 5.
Hi Surfdoc, are you still taking both? I am.
I am, and I am doing great. I have stoppedC/L as of 4 weeks ago but still take my azilect and was only on 1 C/L per day anyway. I also started a new probiotic from solace called ps 138 about 8 weeks ago and that's when I started to notice that I was feeling better with fatigue , speech, droolling, facial seborrheic dermatitis and fine motor skills are way better. not sure which was the bigger catalyst. my dystonia has significantly diminished as well. Additionally I take a pretty large stack of other nutritional supplements and metformin so who knows why im doing so much better but im not going to stop any of it for now in case they are all working together but im very happy to be seeing the benefits. Best of luck. Oh yea one more thing so I don't create any false expectations. I am a young onset guy even though im in my early 50s my PD symptoms started in my 30s so im a slow progressor to begin with. Had a confirming DAT scan in 2017.
You are the only other person I know of who is also taking both. I’m YO too. Most of the time it’s like my PD is gone. Would love to exchange info on what else you are doing! I think YO is a different disease in many ways.
Im currently 46. But this started in my early 30’s or even late 20’s depending on how one defines started
I completely agree. I’ve spoken to many movement disorder specialist that just focus on young Onset and they also agree that the strategy is completely different. I’ll be happy to share my current regimen Later today or tomorrow when I have time to sit down and cut and paste😀
How many cartridges for $467
4 cartridges
Yes, I’ve been taking Exenatide 2mg once weekly injection for 11 months now, ‘off label’, in addition to my usual L-dopa, and rasagiline.I am a non diabetic.
Initially I experienced a dramatic improvement in my walking ability, and increased energy levels.
Now dropping off.
Side effects for me have been weight loss, (2.5 stones)
Important to drink loads to avoid constipation, as GLP-1 agonists (class of drug which exenatide is in ) inhibits hunger feelings, slows down gastric emptying & bowel movements, but doesn’t result in hypo glycaemia in non diabetics.
The Central nervous system has GLP-receptors and exenatide is thought to activate some cell survival processes and increase ATP production (energy)
I’m hopeful I may be slowing down my disease progression, but until phase 3 results are published, I won’t know for sure.
Are you still taking the Bydureon? Are you still perceiving a benefit?
Exenatide / Bydureon Update? Is anyone using Exanatide / Bydureon for PD? Off label?
Did you start taking Exenatide. Any noticeable affects. Perhaps difficult to measure I understand as results seem to indicate a slowing / stopping of progression rather than a reversal.
I’m thinking of starting to take from next week.
Thanks
Hi, I have been taking it since September.
For those of you that have gotten an off label script for Exenatide, did you get it from an endocrinologist, neurologist, Movement disorder doctor or primary physician? What was that process like?
I take this for my Diabetes.. Im In the 5th week and so far it hasn't Done anything. It Hasn't lowered My Bs at all, just given me. Terrible abdominal Cramps and Nausea
Exenatide phase iii trial
Using CBD/THC with PD
Exenatide , Neuraly Pegylated Exenatide trial , Ambroxol or nothing? Please help me evaluate options. 
For those of us with tremor ...
