This topic contains 12 replies, has 5 voices, and was last updated by  Jean Mellano 3 weeks ago.

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  • #15626
     Jean Mellano 
    Keymaster

    My movement disorder specialist is thinking about prescribing Azilect (generic is rasagaline).  Do you have any experience taking this drug? Has it helped you?  If your doctor suggested it to you and you said no, why?

  • #15880
     Jarmila 
    Participant

    Since January 2018 I have used Nakom Mite (levodopa-carbidopa), but my symptoms have not improved sufficiently. My neurologist increased my dose up to 500 mg without a good response. So I tried Azilect and I felt better. Today I will take Azilect and Nakom Mite at 7 am and the second Nakom Mite at 2 pm.

  • #15881
     Jean Mellano 
    Keymaster

    Jarmila
    Thank you for sharing. I took azilect and it made me very nauseous. I am considering it’s generic and perhaps give it more time to get used to nausea, something I had to overcome with carbidopa/levodopa. Azilect brand is very expensive and a lot of the USA Medicare plans do not have it in their formulary

  • #15885
     Jean Mellano 
    Keymaster

    jarmila,

    i too have heard azilect may have some neuroprotective qualities.   there are so many studies my head spins some times LOL.  i though it was interesting that 1mg dose had some impact, but 2mg was not necessarily better.

    • #15892
       Jarmila 
      Participant

      Yes, the 1 mg dose had some impact, but 2 mg was not better. And a higher dose is probably toxic … In general, there is no linear relationship between dose and effect. The effects of different doses may vary greatly at different levels (not only greater and lesser dose-related impacts). Like vitamin – low doses cause avitaminosis, high doses cause hypervitaminosis, and both are bad. Hard to say …

      • #15893
         Jean Mellano 
        Keymaster

        Yes, and we are all so different in how we react to treatments and how pd symptoms differ amongst us all.   Life with pd…..

  • #15882
     Jarmila 
    Participant

    Similarly you can’t buy it in our country, it is expensive and the insurance company does not import and pay for it. I buy Azilect in Germany or in Slovakia. But it might be the only neuroprotective drug. Maybe… I’d like to believe… According to the Adagio study https://www.nejm.org/doi/full/10.1056/NEJMoa0809335

  • #15894
     Philippe Joly 
    Participant
      <li style=”text-align: left;”>I started using  Azilect back in 2009, about one or two years after being diagnosed as it was beîng relaunched in my country (France) after several years off and some improvements. At the time it was supported  by hints as to its possible protective  effets as well as positive effets on the overall mood for peuple prone to depression. I used it several years then I had to stop as I noticed bad reactions when I was eating certain foods : hot flashes, heavy sweat , accelerating heart etc…I did some research and discovered a side effect which was intolerance to histamines. I don’t know for sure this was the reason but these scary reactions disappeared after I stopped using it for about 6 week. Now, I must add that I was not able to really replace it for mood support and effectiveness of sinemet intake. As to its protective role I am  not able to comment. So if you are watchfull for high histamine food ( and possible interaction with other drugs which make an incredibly long list) Azilect did help me for as long as I could take it.
    • #15902
       Jean Mellano 
      Keymaster

      thank you phillipe for sharing your experiences.  we are all so different and it gets so frustrating at times to try to decide what  will for us personally

  • #15900
     Lou Hevly 
    Participant

    I take 1mg Azilect daily and am not sure if it does any good or not. I’d have to stop taking it to know. I’m hoping it will work to keep the amount of levodopa I need at a low level

    The tests that purportedly evaluate its neuro-protective qualities depend on the Unified Parkinson’s Disease Rating Scale (UPDRS), which is a self-reporting survey that is not very precise: two people with the same symptoms might come up with different scores; or, a PD patient and his or her caregiver might come up with different scores, based on the same symptoms.

    • #15903
       Jean Mellano 
      Keymaster

      i do believe the UPDRS scale is way too subjective, making ou disease that much more challenging to treat

  • #15904
     Jeffery Hill 
    Participant

    I’ve been taking Rasagaline for 3 years since my initial diagnosis.  The rationale was that it has protective properties.  There’s no way to know if it’s working because you can’t do a test/control within yourself!  However my symptoms are not progressing rapidly (good news) and I continue to defer starting levadopa.

  • #15911
     Jean Mellano 
    Keymaster

    jeffrey, thanks for sharing.  that is great you are not on levadopa yet.  i wish you continued success!

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