helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
esther51

azilect and sleep deprivation

8 posts in this topic

Hello. Like usual I can't sleep. I've been on azilect for about 2 weeks and it seems to deprive me of much needed sleep. I sleep about 4 or 5 hours a night and for me that's just not enough. I'm trying not to give up on this medication as I know it takes a while to get to its full potential. Any suggestions?

1 person likes this

Share this post


Link to post
Share on other sites

Are you giving up on the med because of the sleep issue or another reason? I will tell you most people give up on meds because they do not work quickly enough. Especially this med, which can take up to 3 months to work. I would say hang in there, in the end it may be worth it.

Also many people don't know that they will experience the side effects of a medication before they get the benefit of it. The reason is that when you first start taking it your body looks at it as a foreign body and tries to fight it off. That is why it can take so long to work. With this and most other PD meds I say "Start low and go slow."

Unless there is some dramatic health reason, other than time, I say stick with it because I have seen people give up too soon on what could be truly the miracle med for them.

Keep me posted.

Share this post


Link to post
Share on other sites

Now I'm wondering about my current Neupro regimen.

 

Started 2mg Neupro four months ago. A week later I went to 4mg and began losing about 2 hours sleep a night. Moved up to 6mg and stuck with it for six weeks despite getting only 4 to 5 hours sleep per night. And even worse is that the longest stretch of unbroken sleep I could get was 2 hours. Needless to say I felt miserable.

 

Then I read where some people were removing the patch at bedtime. I tried this and the first night slept for 4 hours straight and could even fall back asleep rather quickly after waking. Since removing the patch at bedtime, I regularly get 6 to 7 hours sleep a night, unless I forget to remove the patch, then it's 4 to 5 hours again. And getting a 4 hour block of sleep makes a big difference!

 

So, just how much drug effectiveness do you think I'm losing by wearing the patch for 16 hours a day instead of 24.There must be some residual effect. And I didn't notice any difference in the morning between the two regimens, other than the lack of sleep issue. Did I give up to soon on the 24 hour regimen?

Share this post


Link to post
Share on other sites

I really do not think you are losing that much of the effect. At the point you take it off you still have remaining med in your system. The main thing is how do you feel? If you feel good, stick with it. Your body will tell you.

Keep me updated.

Share this post


Link to post
Share on other sites

Mark, just an update on my Neupro experience and a bit of original topic revelance to Azilect.

 

After six months' use I hadn't noticed much benefit and my Dr wanted to change meds. I was a bit disappointed as I like the concept of a patch as med delivery.

 

I am currently using up my stock of Neupro before weaning off of it and have begun taking Azilect, along with switching from Sinemet CR to regular Sinemet. Had been taking Sinemet CR since first diagnosed by different Neurologist in 2008. I must say, the regular Sinemet produced an immediate, albeit small, improvement in my gait and, despite some joint aches (Azilect?), feel pretty good. Dr said about 8 weeks before Azilect kicks in which gives me something to look forward to.

 

Your advice is much appreciated in trying to cope with all the varibles in PD drug approaches. Though my Dr is very good about answering questions, I learn things here that I wouldn't even know to ask about.

1 person likes this

Share this post


Link to post
Share on other sites

Did you go to changing the patch before bedtime instead of leaving it on all night? I take it that did not help since he is charging your meds .

I think the change he made was the next logical choice. The AZILECT, in some people , can work as fast as 2-3 weeks (after they are on the 1mg daily), others may take up to 6-8 weeks. The regular sinemet is there to fill in the off periods.

Since they work by 2 different mechanisms, it will be easier to play around with the sinemet dosing. Easier to adjust for your lifestyle.

Also, the news and work that is being done that points to AZILECT being a possible neuroprotective agent( which means it may protect the other at dopamine cells from dying makes it an even more attractive choice.

But this change, as all changes in pd meds takes time. So show patience and give it a chance.

If you have any question or concerns along the way, let me know.

Good luck.

Share this post


Link to post
Share on other sites

Yes, applied the Neupro patch for 24hrs a day the first couple months of use and had trouble sleeping. Then started removing the patch at bedtime and gained a couple more hours sleep per night. Not much help for me during the six months I used it.

 

The praises of Azilect are good to hear, especially since it is a premium priced drug. And it's always good for people like us to have something hopeful to look forward to.

Share this post


Link to post
Share on other sites

It does seem that there is very little progress as far as me meds for PD. When truthfully, there is much work being done but, it never really hits the papers until it is in the last phase of study or is about to be approved by the FDA. I agree, even a little piece of information can, at the very least, let us with PD know they have not forgotten about us.

Another factor that comes into play is the amount of people willing to get involved in the study group. The more people the company has to study on, the faster the results could be available. So we need to get more people involved in these studies.

Hope this helped.

1 person likes this

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now