Question to those taking Azilect: How effective has Azilect been for you? Have you found that the effect diminishes over time?
I appreciate any feedback here, taking Azilect with good results but my neuro mentioned drug does not seem to have same benefit over time. Is this true?
I take Azilect and Amantadine in the morning and around dinner time. One night I woke up with worse than normal tremors and couldn't figure out why. The next morning I realized I hadn't taken those meds, I had only taken my C/L. So not taking one of those meds caused me to have the tremors that night. I have been on both of those meds for approximately 8 - 10 yrs. I believe it was the Azilect because it is more for tremors whereas Amantadine is more for Dyskinesia. I found this statement about Amantadine but not Azilect......
"This medication may not work as well after it has been taken for several months. Tell your doctor if this medication stops working well."
Also, if you don't already know this, do not take the antibiotic, Cipro, or any decongestants with Azilect.
Thanks laglag, this is very helpful though I am not familiar with Amantadine really I am very happy to hear that you are getting such a great impact on your tremor and that Azilect may be responsible. I have been on Azilect a few months now and I see an improvement in energy and good improvement now is starting to show on my tremor (my primary symptom) but, of course, exercise also plays a role. I just hope it keeps working!
Lag lag do you only take Azilect and Amantadine drugs, nothing else?
Amantadine is good for tremor I find and dyskensia.
I also take Parcopa which is C/L as a pill that dissolves on my tongue. I take it 4/day, sometimes 5 depending on how long my day is. My neuro put me on the Amantadine for a little dyskensia that i was having several years ago. I think all 3 make a difference in my tremor.
I took Azilect for nine years don't know if it did me any good i never took it alone . I was having depression, crying, anger,don't give a shit, why me , overly concerned about the future of my kids and grand kids, paranoid, no sleep almost every night. So i took my self off all my meds and i could not use my hands, could barely walk, so i restarted my meds 1 at a time but not Azilect. It has been about 2 months and i have not had any depression or crying. My conclusion it was the Azilect.
Just for future if you start to have any symptoms like mine.
Hi Bailey, I am glad you are feeling better and thanks for the info. I am in good spirits and am only taking Azilect, vitamins and exercise. Lets hope it stays that way! Hey, I wanted to tell you, I stopped by a Crossfit gym yesterday to check it out. Wow, it looks very intense! I have to admit I felt a little intimidated about working out in such a hard core gym ..... weights are not a strength of mine (no pun intended) and this gym is catering to extremely fit individuals and extremely muscular. You must be in terrific shape to work out there. Kudos to you. I may work my nerve up for it or boxing at some point. Right now I am working on keeping up with my husband on our early morning runs.
Please to here you checked out Crossfit. I think you got the wrong impression Crossfit is for everyone no matter what stage they are at. The workouts are adjusted to your fitness level.
I have seen 80 year old people there. Good luck with what ever you choose to do. keep moving
OK good to know!
Hi Poui I have been taking Azilect for about three years now am finding it still works as well as at first but I think as the P monster worsens the Azilect can't keep up I highly recommend trying it gave me my life back and I accidentally left the small white A pill in my pill container and after about 4 hours I knew something was wrong didn't find out until I refilled my tablet dispenser and whoops there was my lonely A pill so I knew why I felt so OFF
Keep positive. Sunnysky
I have been on Azilect for two years and I am extremely grateful to have found this drug through my neurologist. Within 10 days all my symptoms had dissipated. I do notice that first thing in the morning I sometimes experience light jerky symptoms in my left arm, but they disappear as the day goes on. I take just one Azilect at night. The worst thing for me is Restless legs for which I am now taking 4 x 300mg Gabapentin each day, with Tramadol. I find this site very informative as I am not in contact with anyone else who has Parkinson's.
Tupper I also find the site helpful. I am just starting to get some restless leg - haven't heard of gabapentin. I am so glad to hear the azilect works so well for you after 2 years.
I have been on azilect and mirapex a number of years. I find azilect to
be necessary for walking. I have been diagnosed since 2000. I do
believe that azilect has something to do with the pain I have in
my muscles and joints. I put up with pain to walk. Exercise does
help with pain.
Hi P-oui. I took a similar medication called Eldepryl (Selegiline). they are both MAO-b inhibitors. It was the only medication I took between 1994 and 2002 (8 years). At that stage, mainly due to the fast walking and this medication, I was able to come off any further medication. I have been medication-free since 2002.
Need I say anymore?
John, I didn't realize you were not taking any medication at all, wow!
I have not taken any Pd medication for the past 14 years, although I still have Pd.
John, keep walking! This is great news!
Not just walking but FAST WALKING. It puts the brain under a lot of pressure and that pressure, I think, makes it produce higher levels of GDNF, which is the brain's natural way of healing itself. Did you know that?
Had great improvement with Azilect for about 4 months but now my arm is getting slow again and action tremor seems to be on the increase a little. Exercise like mad but wonder if I may need to step up to the agonists on a low dose. I have to write a lot with my job and Azilect isn't really doing it any more. So yes I'd say - sadly - that your doc was correct in my case!
jeeves not sure that you can increase Azilect for additional benefit, refer to their phase III clinical trial which did not show improvement at increased dosage. I assume that is why everyone is on one miligram. What exercise do you do? Perhaps that could be tweaked? just a thought.
Need you say more? It is relevant that your last neurologist told you you do not have idiopathic Parkinsons as all those on this board have idiopathic Parkinsons.
Hikoi, like others I get confused on the point of idiopathic PD. I understand that Idiopathic means that the cause is unknown. What I don't understand is what changes if you know the cause vs if you do not know the cause.
The main symptoms of idiopathic Parkinson's are tremor, rigidity and slowness of movement. If you demonstrate with these symptoms you will likely get a diagnosis of PD. If you have Parkinsonism you have the same symptoms. Whether it is idiomatic or not, you are still suffering from the key symptoms of PD, correct?
It is confusing and I don't understand it fully. I also notice different answers by 'experts' .
Overall Parkinsonism is an umbrella term and is often used at original diagnosis then in time that is changed to idiopathic parkinsons. This is when the clinician is wondering what will develop, because some types of Parkinsonism only become apparent over time. You may read "I was mis diagnosed" with PD when I had PSP or something similar. As it is difficult to distinguish the two this isn't usually a misdiagnosis but a rediagnosis as symptoms become more clear with time. As part of this clinicians will often give the broader diagnosis, parkinsonism' to allow time to confirm exactly what type.
This also explains some of the apparent high levels of wrong diagnosis. Many that are thought to have PD actually have another Parkinsonism that shows at autopsy for instance. It is less likely that the misdiagnosis means they have no Parkinsonism and is a completely wrong diagnosis, but is still possible.
At least this is my understanding.
Some articles also classify essential tremor as a Parkinsonism.
Thanks Hikoi, sometimes I wonder if "sub categories" of PD might make more sense.
Hikoi thank you for sending this! Nice to review this as there is lots of great info here. I would love to see these "clusters" or subcategories become official and used to tailor treatment... I love what she says about the issue of trying to apply the results of treatment trials across different types of PD. The way it is designed now it seems impossible to get a drug confirmed as neuroprotective.
Hikoi I think this video is phenomenal and I am going to repost it for everyone to see... thanks!
I believe there are subcategories being developed as we speak. There will be different treatment according to subtype in the future.
John's condition does not resonate with my experience. For a start he didn't have a good result with c/l whereas my PD is very sensitive to it.
I don't know anyone with PD long term who is on no medication.
Impossible to get a drug confirmed as neroprotective - perhaps because one hasn't been developed yet?
Hikoi you are extremely well read and have wonderful insights. You know much more about PD first hand and from your reading than I do but John's message has resonated with me because (vigorous) exercise has made a huge difference in the way I feel.
I read the book The Brain’s Way of Healing on neuroplasticity (that the brain can “rewire itself”) and in the book he happens to highlight the details of John Pepper's journey... it is, well, interesting. Like the interviewer, I felt similarly (I'll share) "while reading The Brain’s Way of Healing I had a clear sense of other readers being divided – some turning its pages with a hardening edge of scepticism, some with a growing feeling of wonder. Chapter by chapter, I jumped constantly between the two."
The interviewer askes "It almost requires a faith that neuroplasticity exists…"
and the author responds, "I would put it slightly differently: you don’t have to believe it, but you have to suspend your disbelief and just do it."
The book I mentioned in a recent post also favours neuroplasticity. Although tooted as recent from what I read it has a long history though has been recently popularised.
Thanks Hikoi, always great to get different perspectives. I look forward to reading these!
Hi Hokoi. The last neurologist was the guy went to because when I wrote my book I calimed that nobody would ever know that I have Pd, and I thought I ought to put that to the test. So I chose to see him as I had never seen him before. He got very hot under the collar, when I told him why I was there, and without a proper examination, he said to me, "You do not have Pd, therefore you never had Pd and you should not go around telling people that you do!". How professional is that?
Interesting, so aside from the original diagnosis by the neuro who said you have essential tremor you are since then largely self diagnosed then it seems?
Hi Hikoi. On what do you base that ridiculous statement? I was diagnosed first by one neurologist. 4 years later he immigrated to the USA and his place was taken by his partner, who confirmed the original diagnosis. Then I went to another neurologist after I wrote my book, not the one whom I went to to confirm my statement, "Nobody would ever know I have Pd". She also examined me, even though I went for the insomnia. She came straight out and said that I have Pd, having not told her that when I got there. In January 2015, I was planning my current overseas trip all over the English-speaking world and just to make sure that I do have Pd, I went to another neurologist in Cape Town and told him why I was there and asked for his diagnosis, for which I paid him. He had no doubt that I do have Pd. He is probably the most senior of the Cape Town Neurologists.
Only what you have written. You have reported here that you have essential tremor according to one of your neuros and also that the last neuro, the most senior, said you do not have idiopathic parkinsons according to your earlier posts. Unfortunately he didn't say what type of Parkinson's you have, I only know of 2 others they being drug induced and vascular PD.
My tremor is essential tremor, as against a resting tremor. It is one of my symptoms. I come back to my question, what is parkinsonism? I don't have drug induced Pd and I don't have Vascular Pd, so why do I not have idiopathic Pd. Is it a way of putting aside my Pd as something unusual, just because I have got better and people won't think that they can also get better. The original two neurologists never said it was not idiopathic Pd, only the neurologists, who got me out of the Pd Association used that term for the first time.
while to take effect. I have been at the 100mgs. dose for a week now. Any thoughts? would be appreciated...
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