Azilect anyone taking it any problems?

[Boomercd]

I was just started on Azilect .5 mg for 30 days then I go to 1mg I was told I had PD 3 years have tremors of my left leg and left arm no frozen joints yet I'm wondering if I should wait a while before taking anything IDK there seems to be so many theories on it becomes hard o know what to do

[Boomercd]

Oh by the way I am 56

[Hikoi]

I actually dont think there are lots of theories about begining meds at least among neuros. Generally they say something like start taking meds when symptoms interfere with your life.

The different theories are amongst us the patient. We all want it to be cured or have pd reversed. Many of us are likely to think we should at least try to beat this thing so we try diets or take additives or do exercise..... and to keep us going there is always somebody who claims they have beaten pd following a particular regime. They become the leaders or gurus. I notice when you dont get the same results as them its not because their regime is wrong, but you havent done it right or havent tried hard enough etc.

I think in the end you have to decide what you believe about pd as that influences how you deal with it. So put meds off if you want but I see no point in refusing them when you are finding things getting tough. I dont know if you're are at that stage yet.

[Boomercd in reply to Hikoi]

Thanks

[ruthgt in reply to Boomercd]

first do a lot of exercise go dancing .its important and it is trail proven.every med has side efects..I have been taken Azilect for 5 years.I stoped taking it on my on and it change my life now

[DianeJ in reply to Hikoi]

Hikoi, you are the voice of reason and common sense. There is no one answer to all of our questions, which is what makes this journey so difficult and isolating. A thousand questions, a thousand different answers. We are all navigating our own ship through the fog. Here's to everyone's efforts at making life better.

[M_rosew]

I started Azilet as soon as I was diagnosed and felt much better for it. It was the only medication I took for the first three years. It is said to preserve the dopamine you still have. It did cause skin problems, mainly on my hands, but this subsided fairly quickly.

For now you need to keep moving, especially on speed and movements that become difficult with PD, eg speed, extension, posture. Look up 'Neuro plasticity'.

Look at WPC2019, there should be useful stuff coming from that.

[Boomercd in reply to M_rosew]

Thanks

[Astra7]

Hi

I took it as soon as diagnosed in case it delays progression. It helped my symptoms straight away (muscle rigidity not tremor), but it took a few weeks to get used to it as it made me a little dizzy.

I think it's good to take anything that may slow things down.

[Boomercd in reply to Astra7]

one of my movement specialist didn't want me to start meds till I "cant stand it anymore" but the neurologists said he thinks I would benefit from it the only problem I had so far was a head ache for about 3 days my tremors might even be slightly worse but I read of all the side effects so wasn't sure I made the right choice

[Hikoi in reply to Boomercd]

Oh dear, i wouldnt be too keen on that frst neuro, you've got to suffer first then he might give you meds.

re headache - Make sure you are drinking enough, many of our meds debydrate us a bit and we often loose our sense of thirst.

[Bailey_Texas]

Start the meds as soon as you can. They make life better. There is no good reason to delay taking meds. As far as Azilet goes i took it for the first nine years, I do not know if it helped i took other meds at the same time. I was having terrible night time depression and i stopped all my meds and started resuming them one at a time Azilet was the last one to restart. But the nightly problems were gone so i never took it again and the problems never came back.

[bcowart]

BTW, it's Azilect not Azilet.

See azilect.com

And some neurologists believe that suffering unnecessarily, just as with pain treatment and "toughing it out", can create kind of an "groove" in the brain and actually can make certain symptoms advance when they would otherwise take longer to develop. Better to have dopamine in the brain than to be running low and stressing out your body with cortisol, bad sleep, anxiety, etc. I believe I read a study that showed that people who took levodopa or an agonist when they were first diagnosed progresses more slowly.

On the other hand, my neurologist said it has not been conclusively found through scientific studies that Azilect is effective at slowing down the progression of Parkinson's. I tried it and some of the agonists which didn't help me. So I went right to levodopa almost 10 years ago, and I am still taking a single pill (25–100) every four hours. Over 10 years I have gone from four hours of effective treatment to about 3 1/2 hours. If I mind my protein correctly, I can get about 2 to 2 1/2 hours of freedom of movement and almost normalcy out of every four waking hours.

[jrg54321 in reply to bcowart]

Studies have shown azilect and other mao-b inhibitors slow the progression. From this past March: m.medicalxpress.com/news/20...

[Grasss1973 in reply to jrg54321]

Thank you for that article. My neurologist basically told me the same thing ten years ago when he put me on one milligram of Azilect daily. The data is skimpy and difficult to evaluate because there are no biomarkers or quantitative endpoints that can be measured ; in contrast to most other illnesses where there are a myriad of potential measurable endpoints ranging from blood tests to xrays, Pet scans, CT scans and so forth.

Contrast that to our doctors who have little more than their physical exam and the patient's history to make important decisions about their treatment. Fortunately, that will probably change over the next five to ten years, because of steady progress in research activity.

However, the theoretical reason for taking Azilect is that it may protect the intracellular mitochondria which are the engines of the cell, and by protecting them, the cell is protected from a premature death. That reasoning is good enough for me !

For me, taking Azilect has been a non-event. Eating the more common cheeses has never been a problem, and since I don't drink alcohol, it's not a concern. If I drank, I would avoid beer and red wine sticking to white wine or some of the hard liquors.

Like everyone else says, it would be nice to see some progress in the near future, so here's hoping!

[hopedope in reply to bcowart]

I have been diax 2.5 years and just taking a single 25/100 levo/carbi pill every 5 years which was prescribed for me at diax. I agree with bcowart that it is good to have dopamine in the brain. I had immediate relief from tiny handwriting and slight left hand tremor. I was 73 plus when diax so was not in my 50's or 60's though. I think exercise has helped me keep producing dopamine too. My brother has PD too and his neuro who is head of department of movement disorders does not think azilect is anything more than a vitamin type of pill.

[hopedope in reply to hopedope]

I meant to say I take the levo/carbi pill every 5 HOURS not years :).

[Boomercd in reply to bcowart]

sorry didn't notice that auto correct dropped the c.

[Ruffinglgo]

That is an important reminder about daily protein intake. Also hydration during the day. And yes without the medication I would be so stiff not to mention the ability now to use my hands, walk for exercise & swim. Debilitating dizziness was among my first symptoms and rigidity.

[Ruffinglgo]

I am trying Azilect again. I see a definite improvement in gait. It has taken 5 weeks to adjust to medication.

[alaynedellow]

I take Aziliect and it only meds I take. I have taken generic ragasilene ( as in not brand name) and I felt really rough nothing you could describe but overall off colour. Back on aziliect and everything is settled and I have lovely clear mind with no brain fog. I have dizziness (low blood pressure) but nothing helps that. I find exercise brilliant makes me feel human as I sometimes overthink my symptoms.

I have has no side effects apart from headaches if it late night but heh I go to bed and it gone. Luckily Isleep like a baby

Good luck be positive

[11_dentist in reply to alaynedellow]

What time of day do you take Azilect ??

[Boomercd in reply to 11_dentist]

I take it at noon and set my phone alarm to remember, but .5 so far the head aches are gone now only had them the first few days but they were bad have a month at .5 then go up to 1mg

[moparkie715 in reply to Boomercd]

Boomercd,

I am on day 5 and the headache s are terrible. They could be from lack of water. How long did your headaches last ?

Why do you take your at noon? I am also on .5 and will go up to 1mg at my next appointment (month).

[Boomercd in reply to moparkie715]

first week was bad for headache make sure you drink plenty of fluids

[alaynedellow in reply to 11_dentist]

I take mine upon waking. Only time I'd remember realy

[11_dentist in reply to alaynedellow]

So do I and feel bad 60 to 90 mins after

For..8 months

Then persuaded to go on Sinemet 3 times a day recently

Only time my head is clear is when I wake and just before going to bed

I think they want us all to be zombies

[moparkie715 in reply to alaynedellow]

I have only been on this med 5 days but the last 3 days i have had a

horrible headache early in the morning. Could it be a side effect?.

[Hidden]

Everyone is different, I was given this drug by a Neurologist when I was taking SSRI antidepressants, which is contra indicated. Stopped, took a couple of months to recover. Tried again recently (not taking SSRI) but it made me very down, however, I was given a generic form of Azilect. Hope it continues to help.

[Boomercd]

Thanks Everyone! I fought the DX for 3years and I'm still not sure it is PD I only have the tremors of left leg and left arm, started in my leg and took a year to effect my left arm, I have no stiffness and my arm swings my coordination as issues on that side and that side tires easy. But Im trying to come to terms with it, There are worse things but it certainly is no walk in the park, Blessings on all of you.

[rebtar]

I've also had left side symptoms for about three years, hand tremor which has progressed to arm and sometimes head but pretty mild; some weakness and lack of coordination on left side but it doesn't really interfere much and left foot cramping with exercise that I work around. I find exercise to be key to my wellbeing especially depression/anxiety, but also symptoms are definitely less when I exercise which is every day. I do gym cycling, strength and flexibility every other day, and hiking with a good climb on alternate days. If you haven't taken up a regular exercise schedule please consider, there are many kinds that are helpful including dance, yoga, interval training, fast walking, boxing (Rock Steady), cycling, etc.

I started Azilect 1mg 6 months ago, had no side effects, and also noticed no immediate benefit, but recently I decided I'd try to stop it out of curiosity -- went down to 1/2 a tab and noticed a definite difference so I went back up. I also take an SSRI which my MD specialist said was OK but also told me what to look out for as far as possible negative interactions, which I didn't experience.

[Artsue]

At age 72 I am "celebrating" one year since diagnosis and since beginning Azilect - 1 mg. I take it at bed time, sleep like a baby, and have no side effects. I had very little adjustments to the med. It has cleared my foggy brain, improved my gait, and generally made my symptoms tolerable. However, it has not improved my right hand tremor and it is slowly progressing. I am alert all day - no noticeable fatigue. I have an active daily exercise schedule that includes aerobics, free weights, and stretching, aqua exercise classes, Tai Chi, and just started Rock Steady boxing. The exercises are like another med - feel so much better after classes. I was experiencing a lot of anxiety and neurologist started me on Lexapro which has really evened my mood swings. Life is not perfect but it is good enough!

[maharg12]

I have been on 1mg Rasagaline for the last 6 months andI have had no change so far. I recently went to the Clinic in Boaria Italy ( 1 week intensive therapy - brilliant) and they felt I was slightly under medicated. I am seeing a new neurologist in a couple of weeks to discuss this. I have minimal tremors in my left arm especially in the evenings

[Boomercd]

follow up to this post I took the .5mg for 30 days went to 1 mg about 2 weeks in I started not knowing where I was for sure couldn't remember my sisters name, just in general felt insecure, called my neuro he didn't want me to stop but confusion got worse so I dropped down to .5mg I tolerated it well had an MRI was basic normal, just had my follow up he took me off the azilect starting Lexapro and amantadine my insurance is questioning the amantadine, but I have stopped the azilect and started Lexapro, now 2 days in, I had a major panic attack today don't know if its the Lexapro or the lack of the azilect in my system or maybe not related to either I feel like I am on some kind of wild ride I would like to get off but it is what it is I hope they find something that I can tolerate seems like everything ive tried so far has caused terrible side effects