what's your experience with azilect?

[LearningAllICan]

hey guys - we are still trying to avoid pharma drugs and keep with natural remedies but it's getting difficult, new neurologist recommended azilect. I am looking for your feedback. this will be the first pharma drug to try and we are still not sure about it. Neurologist says it's a good first time Parkinsons drug to go on. I just dont know.

[WinnieThePoo]

There are mixed views on this one. It's often suggested as a way to delay conventional dopamine supplementation meds, or, as in my case, when I told my neurologist I was interested in drugs to slow progress rather than mask symptoms. It's a MOAB inhibitor.

There was some weak evidence from trials that it had a slight impact on disease progress, but recent data suggests not. (It was particularly thought to be of interest in combination with Isradipine - which at the time was in a phase 3 trial)

Main conclusion is it doesn't affect progress of the disease. It's usually not enough alone as the disease progresses. Typically starting Rasagiline can delay the need to start dopamine meds by around 9-18 months, and thereafter it is used in combination - which gives you two sets of potential side effects for the price of one!

It has its own set of potential side effects, common to all MOAB inhibitors, which can be a big problem for some (particularly compulsive behaviours). However, many tolerate it well without problems, so it's an option.

I opted not to, because what I had in mind was trial participation, and when I made that clear, I was referred to the Purpan clinic at Toulouse, and am now participating in the SPARK trial. I think if I do need conventional medications, I will probably try Sinemet first, rather than have 2 sets of side effects to contend with.

[Despe in reply to WinnieThePoo]

"(particularly compulsive behaviours. . ."

Winnie, does it include, not compulsive, increased sex drive?

[WinnieThePoo in reply to Despe]

No. That's just PD does that 😉

Listed side effects of rasagiline include hypersexuality...

[LearningAllICan in reply to WinnieThePoo]

Thank you for your thoughts - very interesting. As we are trying to avoid pharma due to side effects - I need to think about the 2 sets of side effects for sure. Good luck in your SPARK trial.

[Hidden]

B1 / thiamine hcl in high dose and in combination with carbidopa levodopa extended release 50/200.

"The extent of availability and peak concentrations of levodopa after a single dose of SINEMET CR 50200 increased by about 50% and 25%, respectively, when administered with food."

[LearningAllICan in reply to Hidden]

we are trying HCL/ B1 for sure. been on it for a couple of months... jury is still out on if it's helping or not.

[parkie13]

Azilect made me physically sick. Also it felt like I was losing my mind, I could not string four numbers together and remember them. After stopping azilect I did notice that my movement was a little bit worse. So it was helping with the movement. Not a drug for me.

[Limpmaster]

I thought it helped with stiffness and made me feel generally better. I've been on it about a year. I'm also on c/l and the combination seems to work pretty well. The only thing that bothers me about Rasagaline/Azilect is the drug interactions. My understanding is that some prescription and OTC medications can have bad interactions with it and so need to avoid them. Also, I think it interacts with the drugs used for general anesthesia. So if you ever have surgery you have to come off of it temporarily. I've not had to do that but sounds like a pain.

[ruff1]

My husband was on Asilect for quite a few years with no side effects, he withdrew from it last September and started on Safinamide which is supposed to slow progress, he def noticed a difference with the amount of ‘off times’ . 😀

[Enidah in reply to ruff1]

Did his off times increase or decrease when he went off the Azilect?

[ruff1 in reply to Enidah]

Withdrawal from Asilect was interesting, symptoms were pronounced, especially freezing . He had to come off the Asilect gradually over a period of two weeks , the last few days he hardly went out as he didn’t know when he would freeze . Within a couple of days taking the Safinamide he was back to very good days , very little freezing . Within a month there was visibly less dyskinesia and now he very rarely freezes unless he doesn’t eat properly! 😀

[PixelPaul]

I tried Azilect for about 3 months and it did nothing for me. No adverse reactions, but no symptom relief either. It is my understanding that Azilect is provides relief to only a small portion who use it. It's primary benefit was thought to be that it slows progression, although it now appears that has been refuted.

[jeeves19]

It did me really well for about 6 months at which point I added some Requip.

[JohnPepper]

I came off Sinemet & Symmetrel after two years and went onto a similar drug to Azilect called Eldepryl (Selegiline), which I took for the next eight years. At that stage I was able to come off of the Eldepryl and have been drug-free since 2002.

I started doing fast walking at the same time I started the Eldepryl, and together with stress management and learning to consciously control my movements I was able to live a normal life again; drug-free.

If you would like to speak to me then visit my website - reverseparkinsons.net and contact me. I will help you as much as I can, at no cost.

[Enidah in reply to JohnPepper]

Hi John,

In a recent post somebody said that you can do a 14 minute mile when you fast walk. I was curious if that is your time these days. I did a 15 minute mile the other day and then the next mile was 16 minutes. I do believe your age is 85 and if you are doing a 14 minute mile I am going to be mighty impressed!

Enid

[JohnPepper in reply to Enidah]

Hi Enidah. Up until two weeks ago I was regularly doing 7 kilometres in an hour. Then I had another attack of atrial Fibrillation. which is very disturbing. My heart races at well over 2 beats a second, and I am unable to do fast walking at all. The last time that happened was over two years ago and that lasted for four months until it settled down and I was able to walk again.

Whenever I have any health problem, like chest infections, I temporarily stop the walking until I am well again and then start walking for a much shorter time and slowly build back up to one hour again. That depends on how long I stopped the walking.

Yes, I turn 85 in October!

[Enidah in reply to JohnPepper]

John, I am sorry to hear about the atrial Fibrillation. I was just talking to someone else who has that and I know my mother has had it. I hope it goes away soon!

Thank you for giving me something to shoot for. I am definitely impressed. And challenged. I love riding my bike but it has gotten so busy and crowded with traffic around here. I don’t trust the drivers to not run over me and feel much safer walking.

[JohnPepper in reply to Enidah]

Hi Enidah. I don't know what country you live in, but here in South Africa I walk in a security area, where it is safe to walk.

I wish you luck!

[LearningAllICan in reply to JohnPepper]

Thank you John, I have visited your website - very interesting and I am so happy for you and your discovery of fast walking. Thank you for helping so many people.

[JohnPepper in reply to LearningAllICan]

It is my pleasure!

[justjohn46]

hi allican well i was on it for years i give it up as it did nothing for me try something else as for me it was a waste of money, regards john.

[LouThomas]

Azilect is fine as long as you keep your dose to 1mg daily. More than that can lead to inability to process tyramine, which is present in foods like cheese, and that in turn can lead to a dangerous rise in blood pressure. So don't double your dose by mistake.

And don't expect too much, either. It's very modestly helpful.

I get your desire to avoid Pharma, but levodopa is still a miracle drug for PD, and theories that starting earlier can lead to dyskinesias appearing sooner have been debunked. The agonists are generally awful but levodopa/carbidopa will make your life better and there really is no down side.

Please get the "The New Parkinson's Disease Treatment Book" by Dr. Ahlskog of Mayo clinic. He explains very carefully why delaying levodopa therapy is usually not in a patient's interest.

[LearningAllICan in reply to LouThomas]

thank you for the information. I will read it.

[marcet]

I have been taking Azilect for the last 5 years with no side effect

[PDGal4]

Same here. On Azilect for years. It’s an MAO-B inhibitor. There are some antibiotics and cold remedy ingredients you need to avoid, which I don’t take anyway, but no isssues with food or red wine, like MAO-A inhibitors. I thought slowed down progression, but reading differently here. Will ask at next neuro visit. Does reduce amount of C/L needed.

[gingerj]

I'm on azilect and have been for about 3 years. I can't say it's made a difference to my symptoms but I've had no side effects from taking it. Sinemet makes a real difference to my symptoms. But I'm currently reviewing this.

[Astra7 in reply to gingerj]

Me too.

[amykp]

The results from the azilect study were murky--the group that took 1mg/day showed improvement (I mean, in terms of slowed progression, not just masking symptoms!) while the group that took 2mg did not. It made no sense, so the FDA was unwilling to state that azilect worked.

But in animals, MAO's DO slow progression. And there is that weird positive result. In my book, that's reason to try it. If there's even a hope that it will slow the disease, why not? You may be among the lucky who feel no side effects at all, and in fact, get a small amount of symptomatic relief. If you don't like it? Stop!

I take it. I can't say I feel much of anything on a day to day basis, good or bad. I eat what I want...no effects. My progression is very slow. Due to the drug? Who knows...but I'm not quitting.

[LearningAllICan in reply to amykp]

interesting ... thank you .

[Dajudge]

I took Azilect for a couple of years and found it to very helpful with my motor skills problem.

[Kwinholt]

Hi there , I’ve been on Azilect for over 5 years with cd/ld . The side effect I found was extreme sleepiness when I first started taking it. Your body does adapt to that . It’s not the same fatigue you have with the PD disease , it’s like falling asleep in a snap and not realizing you are. Karen

[ParlePark]

I took it for a year upon first diagnoses. When I started Amantadine I started getting horrible headaches. When I went to a new MDS she took me off Azilect.