a new medication changed my daily life - Cure Parkinson's

Cure Parkinson's

25,341 members26,642 posts

a new medication changed my daily life

MrDay profile image
21 Replies

Hi

I have had PD for about 5 years. Have passed me well most of the time. During this autom, I began to get worse again, I got dizzy and it was harder to remember things. For a while I thought that I could not continue working as the principal of a school. During the autom, I was working in a research on PD. In this study, they look at the relationship between PD and the cognitive, our thinking. During a visit with my PD doctor I got a new medicine, Azilect. This medication has helped me so well that I feel a big positive improvement and the cognitive functions are much better. I'm glad I join this study but wonder why I did not receive this medication early.

Regards

Mr Day

Sweden

Written by
MrDay profile image
MrDay
To view profiles and participate in discussions please or .
Read more about...
21 Replies
ronn profile image
ronn

Mr. Day, Thank you for sharing your information on Azilect. I've heard many good things about it. Unfortunately, one of the things is it's price, which I can't afford. I wonder if anyone iis working on a generic version.

drew410 profile image
drew410 in reply to ronn

Hi Ronn the generic name for azilect is rasagiline. I'm sure you wil find seller on the Cheers

Anid profile image
Anid in reply to drew410

Hi drew410, I am living in South Africa and I'm going to google it immediately. If the generic is available here, I am going to ask my dr. to prescribe this i.o. Parklilyn. Thanx for the information.

Anid profile image
Anid in reply to ronn

Hi ronn and MrDay, My dr, also prescribed Azilect, but the price is just unaffordable! We have submitted reports and request to the medical aid for approval, but to no avail. I am taking Parkilyne instead (10mg) p.d. I also have had PD for 5 years, but realy, all I can complain about is the tremors. Otherwise I am fine.

IT seems to help me too, and my insurance pays for it.

I am so glad it has helped you so dramatically!

JennyR profile image
JennyR

JennyR Azilect is very expensive (no generic yet that I know of.) Speak with your neurologist and perhaps he can work with the Manufacturer to get a discount for you, Astra-Zenica is one manufacturer who will work with clients who can't afford the price of their meds

Court profile image
Court

Now these comments are interesting. When I asked for comments from people taking Azilect most of them were negative with people showing no improvement or sufferering unpleasant side effects.

It also appears that the fact that this drug slows down the effects of Parkinsons, is not proven. Had made a decisdion not to take this drug. Don't know what to think now.

MrDay profile image
MrDay in reply to Court

Hi

The only thing I can say is that for me means Azelict a mighty big improvement. Today my wife told me that I remember things I had not before been able to remember. I know there are many side effects to this medication and I know of several myself. But the feeling of being able to think clearly for me is most important now.

Mr Day

Moderator_1 profile image
Moderator_1 in reply to Court

Hi Court

I guess it depends why you wanted to take this medication. If it was to slow down disease progression then scientifically the claims of this drug are not proven but as you will see here people have their own experience.

It is still a good medication that has two uses.

In early stage Parkinsons it is used as a single treatment for relief of symptoms. After a while as the condition progresses people find they need to add another medication.

Later it is used to make the dose of sinemet or madopar last longer because it works by slowing down the breakdown of dopamine in the brain (which is also the reason you take entacapone which is in your Stalevo medication)

Like MrDay I found Azilect had a positive effect on my mood and thinking but I had other side effects so stopped it.

As with all medication there is no right or wrong just trial and error to see what suits.

Hope this information is useful and you have a good consultation with you neurologist.

Court profile image
Court in reply to Moderator_1

Thanks for this. I might mention Azilect when I go to the hospital, but will be lucky to see the head person. I am not actually sure that my Consultant is a neurologist, which is academic as I very rarely see him. I have six monthly appointments - supposed to be one, nurse, two consultant and three 'other'.

Change him to her as he retired and has been replaced by his Registrar, now Consultant. I seem to be managing ok on Stalevo and Requip XL, with occasional blips so maybe I should stick with what I know.

My next appointment is not until May and it could be all change by then.

PatV profile image
PatV

I tried it but at the same time as sinemet so the dyskinesia was bad. The diet prohibitions concerned me but my neuro said not to worry. Wish I could have tried it BEFORE the sinemet.

MrDay profile image
MrDay in reply to PatV

Hello again

I also take Sinemet, 25/100, four times a day. Additionally Pramipexole 0.35 mg. And other medication on special occasions. So together it will be a good cocktail for my PD. And it helps me.

Mr D

Moderator_1 profile image
Moderator_1 in reply to PatV

PatV

As Azilect is used to make Sinemet more effective (so you have the dyskinesia problem from too much dopamine) some people find they can reduce their dose of sinemet. I wonder if you tried that.

PatV profile image
PatV in reply to Moderator_1

yes, I was slowly titrating as per doctor's orders. I think I was on Stalevo at the time. I'll check on that. I wish I kept better records.

drew410 profile image
drew410

Hi I take sinemet 62.5mg x 9 per day, azilect 1mg x once per day and mirapexin .26mg SR x 1 per day. No problems for me. Miraplex prescribed to rid me of Restless Leg Syndrome. No side effects.

Dennis profile image
Dennis

azilect is rasagiline....did not know that. neurologist put me on azilect but it made things worse and after spending $$$$$$ for Azilect the doctor took me

off it. now i dont' know what to do. doc added a 1/2 ER carb/delopa. my legs ache most of the day and "jiggle". I see the doc tomorrow. What can be done with Restless Leg Syndrme? What kind of doc do you see to deal with RLS?

What do they do to "fix it." I am thinking of going back to Mayo and get another work up. Each sympton is getting worse, ie, dizzy, memory, shakes,

dyskinesia. Any answers you may provide would be greatly appreciated. Dennis

Anid profile image
Anid in reply to Dennis

Hi Dennis, I am from South Africa. I have been prescribed Pexola XL .375 ml and since I have been using this,(taking one in the morning only) I have NEVER suffered from "jiggling" legs as you call it. This is really working.

Susie01 profile image
Susie01

I think what we all have to remember is this, each case of PD may have different symptoms and that many of us are not helped by a medication that may have helped someone else. I tried requip and could not tell that it did a thing, and for others it works.

I started on Azilect 1 mg/day from the time that I was diagnosed. The first few months, I did have a lot of side effects, particularly with blood pressure. I closely monitored it. Yes, do follow the dietary restrictions, Azilect in combination with some foods can cause a blood pressure crisis that can lead even to death.

When I first started taking it, my mind cleared remarkably, now I find that my cognitive function is on a downhill spiral. I am not sure what I can do to slow the progression.

It is very expensive, around $700.00/month in my area. I get it for free from Teva, the manufacturer due to my financial situation. If I could not get it for free, I would not be able to afford it. I have no health insurance and right now am living off of my child support...I would be terrified to go off of it, I was soooo debilitated prior to my diagnosis and treatment.

Bitbit profile image
Bitbit

Azilect definitely helped me. It's still the only med holding me, except for Zoloft, coq10 and recently klonopin once a day.

Anid profile image
Anid

I used Requip, but it has been unavailable in South Africa for more than a year now.s

Livin_MY_life profile image
Livin_MY_life

Hi Mrday, I know that many years have past since this post originated which is why it interests me. Presently, I am involved in a clinical trial that is looking at the long term effects of resagaline in the delay o symptoms related to PD. There is also a biomarker component that measures waterlines using global MRI imaging, I hope you are well... as a fellow educator I empathize with the daily stress related to our jobs and the potential to further exacerbate Pd symptoms.. been feeing it.

You may also like...

Has anyone with PD changed medication, when the initial one was not working?

started c/l last year around June. Once he began the medication it gave him stiffness and made...

VOICE RECOGNITION SOFTWARE - A NEW LEASE ON LIFE

course, being able to communicate and maintain relationships is vitally important. I was becoming...

I am taking a break from Magnesium. You are welcome to change my mind.

seems thin and not specific to PD. I have a high school degree and am error prone, so don't take...

The Black Box Gift and my new Username

All, I hope this post finds you well. I wanted to update you regarding my username. I used to go...

Medications for Parkinson's

recommend medication, only exercise as it is thought to be neuroprotective. She said the...