a new medication changed my daily life

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

20 Replies

oldestnewest
  • 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.

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

  • 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.

  • 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 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

  • 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.

  • 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

  • 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.

  • 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.

  • 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.

  • 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

  • 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.

  • 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.

  • 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.

  • 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

  • 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.

  • 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.

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

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

You may also like...