GLP1 agonists Patient Views

I'm on a GLP-1. I don't know if it's working re: delaying Parkinson's progression. It's certainly working super well for weight loss which in turn has made me sleep better and feel more confident/excited to go to the gym and both of those things are certainly related to quality of life with Parkinson's. The fact that the GLP1 could potentially be helping delay progression with Parkinson's in the long term is certainly an additional upside, but not anything I'm going to be able to confirm in the short-term or probably even in the long-term.

Have read everything there is to read about GLP-1 drugs. Here is a little summary

Several phase 2 studies are positive for exenatide and one for lixisenatide. Liraglutide trial is negative.

Exposition for GLP1 was around 1 year, motor symptoms were stable or regressive, still ongoing two months after the end of the GLP1 exposition. When looking at the supplementary data, results were positive mostly for YOPD patients < 60 years old.

NLY01 trial (pegylated exenatide) was negative for the primary objective, but when looking at subgroups, again positive for < 60 YO patients.

I have myself started exenatide two months ago and not taking any dopamine medication. I am happy as it seems to work for me : less rigidity, less bradykinesia and my arm has started swinging again (it was not moving at all before). No adverse effect except some nausea the first two weeks.

Exenatide has been very beneficial for the last 3 years. Self pay in the US, but I saw a significant reduction in most symptoms.

I'm really insulin resistant and have been on metformin since my diabetes diagnosis 20+ years ago. Was diagnosed with YOPD almost 2 years ago. Recently, I got a new Endo who put me in Ozempic to try to further reduce my insulin resistance, and there has been some indication that GLP-1s help with PD.

Young onset PD here going on 10 years now. I’m 55 yo. Recently got DBS -game changer. Now I’m thinking about trying GLP1 drug - there is some early stage research suggesting they are neuroprotective. Anyone here trying it or know anyone who is? If so what has their experience been? How do you know if it’s working?

Peace to all.

Yes. After spending $1,960 on an experimental injection of Bydureon/Byetta/Exenatide I have now found an improvement in my general overall symptoms.

Improvement:

• More ON time.
• Little or no Dystonia and Dyskenesia
• Depression still with me but I can overcome it by playing music I love.
• Little or none of light head and dizziness.
• More interest in my home duties.

Problems are:

• Heavy sweating when using a small amount of energy…..hard to cope with that.
• Body still frail and prone to falls of which I have had many.
• Stick and Frame always close at hand.
• My toes don’t have normal sensations and feel numb. After a while I have to get my shoes off. The toes are twisting inwards.
• Had a wonderful 2 hours from 3.00am to 5.00 am where I felt completely Normal. Then I began to crumple and start on the days ration of Madopar. In those 2 hours I managed to strip the Queen Size Bed, remake it with fresh linen, wash and dry the linen all by the Dawn. Amazing. I said to myself I’m cured. Of course it was fleeting. I am optimistic that I’m on my way to a better retirement.

I do not know what research will end up revealing about GLP-1s. I think that it is showing a lot of promise in many areas of health. If you want to try it, online services are using real licensed prescribers, but your neurologist may be willing to try to prescribe it; at the very least I’d get their permission to take it w your other meds if you acquire it elsewhere. I use an online outfit that uses a compounding pharmacy providing oral tablets. Not as fast results but speed isn’t my goal. The side effects are more manageable with oral, too, as you’re not getting a megadose all at once.

I’m also on a GLP-1 and also not sure if it is doing anything for PD but if I figure it out, I’ll let you know

I hear you.

I think the GLP-1 finding implied slowing progression, not a cure, per se

From another sub I am in. Myself have been on wegovy too for a few months and have noticed possibly better impulse control. Interesting fwiw