Hello all! Just started this medicine three days ago and I’m not quite sure what the medicine actually does. If it is supposed to extend The L/C it absolutely does not and quite frankly I’m taking more L/C than I was before and I called the doctors office and hopefully something will pop up tomorrow in terms of some answers. What this medicine does do is it tends to make me feel jittery as opposed to tremoring which again seems to be odd from what I’ve read.
Additionally, what I have noticed is after I take L/C, I take a little bit of Mucuna after and it seems to make me feel much better I don’t know if that’s because the Mucuna tends to be stimulating or not.
Thoughts?
Onward and upword!
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MissRita
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The research isn’t clear but it is used primarily as a Neuro protection. Most neurologists recommend taking it despite the lack of clear evidence. So don’t necessarily expect symptom relief with this medication.
I have been talking Azilect for about four months. The Neurologist told me that I likely wouldn’t notice a direct change in symptoms but that it could be beneficial long term. I have noticed that my tremor has settled down pretty well but that could be due to other supplements including B-1 that I also take. Stick with it for a bit. I totally understand your reluctance to add yet another pill to the pile! I sat on the Azilect prescription for about a year before the doctor insisted I start it. Soldier on!
Neuro protection? For sure no more neuro protective than gluthation or vit C or all the B'S and CoQ10 and melatonin and omega 3 and keto-diet ... no mention to sugars and carbo damages to the brain ....
1 mg Azilect (rasagiline) has about the same total effect as 100 mg of C/L. We say the levodopa equivalent dose (LED) of 1mg of rasagiline is 100. But its effect is spread out across 24 hours, rather than perhaps 4 hours for C/L. Its intensity, therefore, is only about 4/24 = 1/6 that of C/L. So, although you probably will not notice it, it is working away in the background.
I take 25/100 of C/L 5 times a day about every 2 1/2 hrs. I have had Parkinson's since 2014. I have always gotten dyskinesia since day 1 i have tried to cut my pills in half and take them about an hr apart sometimes it helps sometimes it doesn't
Its horrible to have dyskinesia its worse than the tremors i think. But its a vicious circle if i take enough to control my symptoms then i have dyskinesia and if i cut back i have horrible tremors
I am non-tremor dominant so I struggle with rigidity and bradykinesia. I feel like I spend my time either waiting to be “on” which means constant dyskinesia or waiting to be “off” so I can be still.
That sounds horrible! Do you have a good movement specialist? Covid really screwed me up because we couldnt see our Drs we had to do virtual and that is not helpful to me. i need them to see what i am talking about
At my neuro's suggestion I tried Rasagiline (Azilect) for about a month. Although rare, symptoms of serotonin syndrome may develop if you're already taking an antidepressant, e.g. an SSRI (seratonin reuptake inhibitor) while you're taking Azilect. That happened to me. Too much seratonin in my brain resulted in a trip to the hospital via emergency room. It was a terrifying experience. Please check with your neuro or nurse practicioner about drug interaction side effects... no matter how rare they're reported. Good luck 😃
This sounds like the reaction my husband had to madopar and kinson(sinemet). They made him jittery. I do think it could be seratonin syndrome. We are using a raft of things now and he is a lot better but it is just coming out of summer here so I will hold my judgement until get near the end of May/June which is when he normally goes to pieces and if he is still good I will declare a success.
New things to his regime that have helped I think are :
He is using the apolloneuro since last December which regulates heart rate variability. He is using the coronet red light helmet twice a day since mid March. He has a couple of drops of hemp oil in the morning( without the cbd and thc so it is non prescription.).
He takes a 1/4 sublingual gaba if he starts feeling anxious.
He takes 1/4 procyclidine morning and night to counteract effects of any other medications. He has an air filter in his bedroom where he sits most of the day.
Last December he was anxious to the point of being suicidal and actually threw himself down the stairs backwards one day when I went shopping and he was home alone. Fortunately only bruises. He had to take clonazapam a few times a day at his worst to calm himself. Now his mood is pretty much stable, and he hasn’t had clonazapam since mid December.
He is pretty much completely of his mirtazapine which made him dopey and sertraline that also made him jittery. He isn’t depressed at all now which he was when he went on them.
He doesn’t seem to need afternoon sleeps now and seems to have a little more energy.
I will let you know if it carries on through winter.
I don’t believe that I have serotonin syndrome because I do not take and have not taken any SSRIs. I do not take any kind of CBD or cannabis products as it actually makes me tremor more and I found that to be very interesting because I started trying that in the beginning when I was diagnosed and nothing worked along those lines. As a matter fact I just got more more high but the tremors were worse.
My husband started taking Rasagiline a year and a half ago. He’s been dx for nearly 6 years.He didn’t want to increase Modopar as he was getting dyskinesia from increasing the dose. He had to start on half a dose, then increased to one. It definitely increased the dopamine available, for him but the dyskinesia was still there. Neuro added in Amantadine and the combo of Madopar, Rasagaline and Amantadine have been working Ok for him since then. He has been able to adjust Madopar and takes between 3 and 3 and a half doses a day.
Unfortunately for me antagonists do not do well with my body. They tend to make my heart race and they act as a stimulant in my body and therefore I feel like I’m running a very fast race all day long. On the other hand they do make my ADHD better and my concentration better but the side effects of amantadine and neupro were heinous to my body and my mind.
Hi, Rita!I've been taking it for 1.5 years (no other medication) and I have had no improvement - on the contrary: my symptoms are slowly getting worse...
Hope you find a solution for yourself, everybody is diferent
I’ve taken it for 5 years. It stops the body mopping up excess dopamine, so should leave more dopamine available for our poor deprived brains. (as does smoking).My neurologist said it may slow down rate of decline.
Rita my doc told me it helps the dopamine cross the barrier in the brain. Her experience has been people say they don’t know if it’s helping or not but once they come off of it they realized it was helping. I actually just got my medication and will start tomorrow morning. Hopefully we both can handle it LOL.
I was put on rasagiline when first diagnosed 8 yrs ago. I have never noticed any side effects. It was 4yrs plus before I added L/C so it may have delayed progrssion.
It was the first medication my neurologist put me on for neuro protection.He told me it would take 3-6 weeks to kick in. It definitely helped with stiffness and I personally believe it helps my mood. I was very hesitant to take it after reading potential side effects but I actually experienced no side effects.
That’s great to know. I do have stiffness and at times my mood is not what I would like it to be as I tend to be irritable and have more anxiety than I’ve ever had in my life. I don’t like being irritable because it’s not who I am so I’m hoping this may help.
Good luck sorry I can't help you. I'm delaying starting any meds. I'm trying b1 along with many supplements. Keep me updated. When were you diagnosed.?
2017, tremors started 2015. I’m going strong Memorial in Rochester New York next week to get an additional opinion because there just seems to be so many things that they’re trying and my body is either too sensitive or maybe the tremors or from something else? It’s a really weird situation because I have posted another threads that there are times when the tremor gets so bad that I will treat it like a low blood sugar have a candy bar and a sprite and then 20 minutes later the tremor goes away and it can go away for up to 89 hours. Very very strange. I would like not to be on any medication but at this point it’s not an option.
My tremors fluctuate also. Mine are exacerbated by stress and anxiety.. I was scheduled to have a MRI to determine if I have a tear or a muscle pull or nerve impingement. They refuse the MRI because I have tremors. So now I have to ask for a ultrasound or go on medication to see if it stops tremors completely.
Crazy! I get them from stress and anxiety too! The hardest part for me is if I’m anxious or stressed out about some thing then no matter how long I have taken my medication before I immediately go into an off period. Meaning if I take my medicine at 12 noon and if I have a stressful or anxious event then the medication basically wears off anywhere from a half an hour to an hour after taking it. As it ever happened to you?
This sounds a bit similar to my tremor! I'm on dopamine agonists, but they're not doing much for the shakes. Propranolol seems to help me some, have you looked into that? It’s a beta blocker so it should help calm you down and therefore improve the tremor as well. The tremor is not terrible for me just yet, but it's getting worse and more and more unsettling.
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Mucuna Pruriens - a few more questions
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