Hello all,
I have been experiencing off times about 3 1/2 hours after taking one C/L, so my MDS suggested one of these three medications as an add on. (I started with Nourianz, which had no effect.
I’m wondering about what people’s experiences has been with any of these drugs? Pros and cons?
Thanks.
Jocelyn
My experience with other MAO-b inhibitors ( rasagiline (Azilect), Xadago (safinamide)) and COMT inhibitors (Ongentys (opicapone)) has been good - they help extend on time and no adverse effects.
I am on Nourianz 40mg since 2019 with good results and on Gocovori since 2 months and I am experiencing better results. I agree with you, Nourianz is not that powerful but I find myself miserable without it. I find that Sinemet without Nourianz is not tolerable, so maybe all these adjunct meds act differently in different people. You just need to experiment with each, one by one. I wish you the best.
I was on C/L 3 times a day and Xadago. My neurologist suggested Ongentys to reduce the internal tremor and the occasional freeze of gait and for me this has been working very well.
Cons, some nausea in the morning.
Good luck
Can you please explain your internal tremor and how Ongentys has helped it. I suffer unbearable internal tremors in arms and legs like electric shock running down them. C/L stops for about 3 hours only. So I’m trying to get Ongentys prescribed but Parkinson’s nurse won’t agree to it. I’m looking for proof that it works. Thankyou
I had internal tremor in my upper body, feels like having palpitations, a restless feeling, very unpleasant. My neurologist said that Ongentys would help me to keep my dopamine levels more balanced, reduce the off moments and I believe it does for me. The internal tremors are much better and the freezing of gait as well. Maybe you should talk to your neurologist about it. Good luck to you.
Thankyou. I’m in U.K. and the problem is the cost of it to the NHS. I have been offered entacapone instead but I would prefer the one a day Ongentys. I will try it and see what happens
It sounds like the problem is your undertrained nurse (sorry to sound redundant).
wish you all the best 🤞🤞🤞
My experience is a bit different with the NHS, my neurologist seems to throw meds at me! I've got tons I don't take....
Entacapone works well enough for me.
I took Rasagiline for 6 months and saw no noticeable improvement. Just made me feel a bit odd.
I started with Rasagiline and (a dopamine agonist) Ropinirole in 2016. I introduced co-Carbidopa later and then added Amantadine. I swapped Rasagiline for Safinamide not long ago but only for supply reasons. The combination works for me though its a lot of chemicals and I dont pretend that its ideal for everyone. It helps me to lead a comparatively normal life with a few minor side issues I can put up with. Experiment until you get it right.
Why do neurologists prescribe an add on to such a small amount of c/l in order to deal with off times, instead of increasing the c/l first? one c/l is small if it's 25/200. Why add on even more medication of a different nature. I was up to 600 mg of c/l per dose before my neuro said let's add the extended version of c/l instead to reduce off times and taper off the immediate release. He told me 'add ons' are an option but not a first option.
I take 3 25/100. I could increase the amount, but it won’t make it last longer, right?
Yes, more can reduce off time, and if not experiencing dyskinesia, why not. My neuro explained to me that doses can either be increased to prolong ON time, or broken down into smaller doses called (“fractionating”) which are more frequently administered, to reduce OFF time. This was his first line of approaching off times and seems to be the protocol or standard. Which is why I don't understand at such a small dosage as you seem to be taking that strategy as not been presented to you? you can also add an extra 1/2 tablet to your current 1 tablet to test. And surprised your doctor didn't even recommend that?
I should note that I am no on Rytary, the slow release version of c/l which has been great. They also have the extended release carbidopa Levodopa that you could try.
There have been several claims that dopamine is toxic to the brain. In investigating this I found the following. It appears that MAO-B inhibitors may reduce the amount of toxic by-products produced from dopamine. If this is true, then that would be one reason to take them.
Source of the picture:
translationalneurodegenerat...
Some other interesting notes from that web page:
DA exerts neuron toxicity via its deleterious metabolites, including ROS, DAQs and DOPAL. Both DAQs and DOPAL can react with sulfhydryl groups, and agents containing sulfhydryl groups, namely, GSH, N-acetylcysteine (NAC) and L-cysteine, are able to competitively conjugate with and detoxify the toxic by-products of DA [5, 150,151,152].
NAC, an antioxidant and a precursor for GSH, has been used in clinic to improve motor and mental abilities of PD patients, possibly by restoring dopaminergic neuron functions [158, 159].
I take both C/L and Rasagiline.
I think there are healthier ways to remove toxic by products from the body. Glutathione?
Rasagiline? 
Rasagiline and Depression
Safinamide. Does anyone use this?
Who uses Opicapone?
Azilect : does it slow progress? Is it neuro protective? 
