Exenatide Once Weekly Over 2 Years as a Potential Disease Modifying Treatment for Parkinson's Disease (Exenatide-PD3)

[Farooqji]

clinicaltrials.gov/ct2/show...

Wondering if anyone on this forum has been taking it. Kindly share

[Surfdoc1]

Good morning I just saw your post, I have been taking exanatide for ten weeks. I am young onset and have mild symptoms at this point in life 53yoa. Take rasageline and (1one) 25/100 per day sinemet. Have had PD symptoms of mild tremor since 2004 was diagnosed in 2017.. Haven't noticed any obvious changes yet from the exenatide and can't really tell if symptom progression has slowed. started exentide around same time starting sinemet. The good news is I have not had any negative side effects from exentide but have had a lot of weight loss which has been helpful. Also taking Mannitol and a host of other supplements so can't say one way or another but sticking with it for now .

[Parkinsonjisung in reply to Surfdoc1]

Are you taking exenatide for diabetes?

[Surfdoc1 in reply to Parkinsonjisung]

No for Pd based on outcome of last 2 phase 3 studies. Taking off label. So many people take off label any way for weight loss and appears to have limited risk profile. Both of my MDS said it’s the least of my Med concerns so I’m being proactive. There are good outcome presentations of those trials on YouTube if you search exenatide and Parkinsons. I use bydureon bcise

[Parkinsonjisung in reply to Surfdoc1]

Ya, I'm very much aware of the trial. Be very interested to see your progress over the next year

[Patrickk in reply to Surfdoc1]

When I was taking Exenatide (Byetta then, twice a day shots) I lost 50 pounds in 50 weeks without effort. Had another 50 to go -- not so easily.

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/...

[Alekyz in reply to Patrickk]

Hi. I have been taking exenatide for 14 weeks now. By week 8 I noticed significant improvement in terms of mobility. My symptoms are mainly stiffness on my left harm and shoulder and foot dystonia. I take sinemet three times a day. In the beginning the effect did not last until the next period. Now I can go for 8-9 whithout it ( stiil take it regularly) but a few times I forgot and let the time pass. This would never happen before) . Overall I fell more lively and active. I am not sure if it is the exenatide but the truth is that I am feeling much better so I will keep the combination. I am 48, been diagnosed one year ago and started with the foot dystonia three years ago. I am pre diabetic so I convinced my physician to try exenatide when I read about the ongoing trial.

[Farooqji in reply to Alekyz]

This is very encouraging. Thanks for sharing

[Patrickk in reply to Alekyz]

Great! Hopefully, if things work out for you the way they worked for everyone (and every mouse I guess, in that stage :-]), you will never get any worse. You encourage me to push harder for the drug now.

Here's a possible path to get the drug:

[cut-and-paste]

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/...

[Farooqji in reply to Alekyz]

It's been 6 months since you started exenetide. How is it going so far?

[Surfdoc1 in reply to Farooqji]

Doing great still on same meds , still working , lifting, boxing running and biking. slow improvements in cognition are evident. back working full time

[Patrickk in reply to Patrickk]

my link did not go where I thought it would. Let's try again:

parkinson.org/blog/science-...

[Patrickk in reply to Patrickk]

parkinson.org/blog/science-...

[Hidden in reply to Surfdoc1]

Hello, did you mean to say tremor in 2014, diagnosed 2017? Just wondering. My tremor started 5 years ago but was so infrequent I remained in denial until recently. Can you please update us on how you are doing with exanatide? I’m about 1 month in to taking Ambroxol.

[Surfdoc1 in reply to Hidden]

no, Tremor started in 2004

[Hidden in reply to Surfdoc1]

Thank you for your response. It’s amazing how long diagnoses can take. I’m elated to hear that you are doing well. I hope exanatide will be available to us all soon!

[Surfdoc1 in reply to Surfdoc1]

NO

[Leslim in reply to Surfdoc1]

I m Atypical PD with mainly stiffness on right side, having lower back pain n frozen right shoulder, diagnosis as PD since 2018... the off period is like zombie walking... very heavy legs n stiff back... r there any criteria for taking exenatide

[Alekyz]

Hi. Things are running smoothly. I continue to take Sinemet 3x a day and exenatide every Saturday. All the stiffness on the left side is gone and I feel quite normal on my day to day activities. I no longer have off and on times. I tried recently to cut sinemet completely for an all weekend and didn’t notice any change ( equivalent to ON time during the all weekend ) . Currently my only complains are foot dystonia ( but even this is much better. I can do all my daily activities without triggering it and it only appears if I try a longer walk ) ,some pain in my left inner elbow and lack of strengh in the left arm. I still have active dreams now and then. Overall I feel much better and a lot of the days I don’t even remember that I have PD apart from the routine of taking the pills. I still don’t know if its going to last and if works the same for other people but right now I am just enjoying the extra time I am getting.

[JayPwP in reply to Alekyz]

Would you describe your typical Saturday and weekday? What do you eat and take?

[Hidden in reply to Alekyz]

That’s very uplifting to hear! I’m 46 so we are sort of in the same boat. Thank you so much for the update! Do you think you might try reducing sinemet?

[Alekyz in reply to Hidden]

I will discuss it with my doctor on my next appointment in July. The only reason not to is the foot dystonia that still bother me on longer walks and might get worst but maybe I will give it a try. I will update you about what I decide with my neurologist.

[Hidden in reply to Alekyz]

If you aren’t taking magnesium and zinc, I highly recommend you try it as it helps with cramping