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azilect & dyskinesias

djbk
1 post
Oct 01, 2007
12:45 PM
i just ran across this message board today, so this is my first-ever post. i'm a young onset pd patient, diagnosed 9 years ago at age 35 (i'm 44 now). i recently added azilect to my arsenal of meds, on my neurologist's recommendation, after i complained about my "parkie freezes" and festination, especially in the a.m. before first dosages had kicked in. the azilect seemed like a godsend at first -- after about a week or two, freezes and festination were completely gone, as was my micrography -- suddenly my handwriting was large, clear and legible. but then dyskinesias began, and progressed quickly. they became pretty much unbearable, so i cut back on the azilect and then discontinued it completely. dyskinesias virtually disappeared, but now are starting to return, even though i'm off of the azilect. my doc has suggested replacing comtan (which i take in the form of stalevo as well as independently w/ time-release sinemet) w/ tazmar (sp?); he thinks this may help smooth things out and reduce my dyskinesias.
has anyone else had similar experience w/ dyskinesias and azilect? any advice or suggestions?
thanks.
trevor-1
President - YOPA
219 posts
Oct 01, 2007
3:06 PM
Although its somewhat of an oxymoron - welcome to the YOPA message board. This is one organization that I wouldn't mind saying farewell to and celebrating a cure.

Azilect - the "wonder drug" seems more like the "blunder drug". I went on azilect 0.5 mg daily and after about 2 weeks felt great - this lasted about 2 months then i felt worse then ever so I discontinued it and felt better once again.

Parkinson's seems to be a 'yo-yo' disease - changing daily.

Over my 9yrs with PD I have played 'drug roulette' - drives my MDS crazy but being an RN, I feel like I have the knowledge to play around with my meds. I certainly do not endorse the practice.

I feel fortunate that I have not yet experienced any dyskinesias or freezing episodes. I just know that my first freezing episode will be a good one - probably while i'm standing at a urinal.

Once again welcome,

Trevor

nutuba
4 posts
Oct 05, 2007
9:58 AM
Hi,

I started taking azilect in February, and I've been delighted with it. It seems to have helped me "spread out" my dosages so that my second round of meds doesn't follow the first round as closely as it did before, and it's allowed me to move my last round of meds out a couple hours, so the quality of my evenings is better than it had been.

I started experiencing a little dyskinesia (mostly twitching of facial and neck muscles) in July / August, but I have no idea if it's related to azilect or not. Even if it is, the benefit of azilect (for me) seems to outweigh the dyskinesia I've been experiencing.

But one thing I've learned in my 8 years since diagnosis ... everybody's PD seems a little different / unique to that individual, and the response to medications is also unique.

I guess PD can stand for "Personal Disease" too. :-)

Regards,
Joel

brknbck89
43 posts
Oct 06, 2007
4:26 PM
Joel's comment of PD meaning "personal disease" is really so true. We're all just so different in our "version" of PD. I was on Azilect for about 4 months and it did nothing for me, for better or worse. Such is life with PD.

And Trevor - first freezing episode at a urinal? LMAO "Umm, excuse me sir, but could you reach over and give me a hand please?"
----------
Todd
PDTalks.com

Nicole05
39 posts
Oct 08, 2007
2:16 AM
Hi there.

My MDS agreed to take me off Mirapex due to obsessive compulsive behaviors and start me on Azilect. I also take Sinemet.

I have a diagnosis of Parkinsonism, which may end up being PD or one of the PD-Plus disorders. Either way, the goal is to increase the length of time between Sinemet doses, without the obsessive compulsive side effect that the Mirapex had on me. I am very hopeful that Azilect will be able to accomplish this.

I have only very mild dyskinesias, and it will be interesting to see if they resolve or increase with the Azilect.

Like everyone else, my condition and the symptoms are everchanging. One day I feel great and only slightly notice my symptoms. The next day I may have major symptoms breakthroughs. It is absolutely like a Yo-Yo condition.

Anyway, I hope everyone has a great day. Thanks for this post. I was hoping to read about others' experiences with Azilect.

Nicole

coletteg
4 posts
Oct 22, 2007
5:01 PM
AFTER 3 MONTHS ON AZILECT WHICH WAS TO BE MY LIFE SAVER IF ALL THE CLIPPINGS IN THE PRESS AND MEDICAL JOURNALS ARE TO BE BELIEVED. I TOOK 1 MGM A DAY ALONG WITH MY SINEMET OF FIVE DOSES A DAY OF 200/50 CR AND 100/25 OF REGULAR SINEMET. MY DYSKINESIAS HAVE NOT IMPROVED AND I'VE HAD A COUPLE OF SESSIONS THAT WERE INTOLERABLE. LAST FALL I LOST 15 POUNDS IN THREE MONTHS AND I AM CERTAIN IT WAS DUE TO THE ENERGY CONSUMED WHILE I WAS SPAZING OUT WITH DISKENSIAS. I AM TITRATING MYSELF OFF THE DRUG AND WILL DISCUSS A REPLACEMENT WITH MY PHYSICIAN. I WAS USING COMTON PREVIOUSLY AND MAY GO BACK ON IT. TO ADD INSULT TO INJURY I HAD ONE OF THOSE MAO INHIBITOR REACTIONS WITH TYRAMINE - SPENT THE DAY IN THE HOSPITAL. I HAVE NO IDEA WHAT FOOD ETC CAUSED THIS AS I DID NOT HAVE ANYTHING ON THE "DO NOT EAT" LIST AND THE AZILECT IS NOT SUPPOSED TO PRODUCE THE CHEESE EFFECT IN THE DOSAGE I WAS USING. OFF THIS DRUG AS I DO NOT WANT THE REST OF MY LIFE TO BE WORRIED OVER ITS EFFECT ESPECIALLY IF I WILL HAVE A VERY BAD REACTION. ANY SUGGESTIONS AS A REPLACEMENT?
UNEXPECTED REACTION TO SOMETHING I DON'T ANTICIPATE !!!!!! SAY HANG TIGHT AND
Candy
4 posts
Oct 22, 2007
7:09 PM
Hi,
I am on sinemet and requip and have been on them for the last 6 years. Dyskinesia and I are long time friends (ha ha). By the end of the day i feel like I have run a least 3 marathons. My doctor lets me tweak my meds and I have found if I break my sinemet in half and take it more frequently (The same dosage I have been on) that i keep a more constant level of eldopa in my system. The dyskinsesia is still there but not as hard. I have had trouble with weight loss because of the dyskinesia. But each of us is effected differently by the disease and the drugs. With me it took them 6 years to find the combination that works for me but I also know that it will not last and will have to try something else. That is the way of pd.

Candy

kbachn
15 posts
Oct 23, 2007
6:32 AM
i too experience dyskinesia when i'm on azilect. i'm taking it more for the neuprotective quality (assumed) more than the symptomatic relief (these MAO inhibator drugs dont seem to do anything for me).

Regards

dab810
87 posts
Oct 23, 2007
9:05 AM
Kbachn I tried azelect for a while with minimal/ marginal improvement then discontinued it . Is there any proof that it is neuroprotective ? if so I would probably take it again. Thanks Dave
kbachn
16 posts
Oct 23, 2007
10:17 AM
Hello Dave,

there is no definitive study proving conclusively that the Mao inhibitor drugs are neuroprotective. however, it's been long suspected by the doctors/researchers that Selegiline or Azilect have this protective quality.

my opinion is to take the Blaise Pacal's approach "you have nothing to lose if it is not true, but then what if it is true....." (his is towards religious belief :-) )

are you covered by the insurance, because this darn drug (in absence of competitors) costs about $8/pill in Canada. what if you are in the 3rd world with Parkinson......a scary thought. Just wondering if we can do anything for our fellow sufferers who are even less fortunate. anybody has any idea?

do drugs companies in general have different pricing models? (i doubt it). The general timeline for PWP to being bed-ridden before the invention of levodopa is what...5-8 yrs?

Regards, Ken N.

dab810
88 posts
Oct 23, 2007
12:13 PM
Thanks Ken, I sometimes forget how fortunate I am to have meds at all. I'm also Canadian and have had many blessings.You reminded me to count them! Dave
LB2
1 post
Nov 15, 2007
4:15 AM
I have been diagnosed YOPD 8 months ago. I have had great result from sinemet 25/100 but not so good on other meds. I have had allergic reactions to Requip,merapex,nuepro etc.. My Neurologist put me on Azilect 3 weeks now and it has given me relief from insomnia and my walking seems better but still have to use a cane, and less tremors BUT..having more headaches and some chest pain lately. I am having surgery not related to PD but can I just stop taking Azilect 2 weeks before? With some meds you have to slowly go off. Just wondering.
kbachn
23 posts
Nov 15, 2007
6:49 AM
LB2,

i believe so (stopping the azilect) but check with the doctor.

ottergrrrl
104 posts
Nov 15, 2007
7:33 AM
Do check with your own doctor but -

My PWP takes Azilect and was instructed by his doctors to stop taking the Azilect "cold turkey", that is just stopping the meds with no step-down, two weeks prior to his DBS surgery.

Gracia
1 post
Nov 18, 2007
8:17 PM
Hi, I am considering going on Azilect because it is supposed to (advertised to) help with mental slowness and what they call executive functions. I have some problems on Mirapex with compulsiveness, so far on Sudoku but nothing too expensive.. So I am thinking of trying the new patch anyway. Missing my noon meds is part of my execution problem... Has anyone had good or bad luck with Azilect re: clognition?