February 6, 2020 at 4:35 pm #17765Bob GlissonParticipant
I keep reading negative stuff about Azilect.
If you are new to PD and were prescribed Azilect, you may have some questions about it. I know I did.
I was prescribed Azilect about 5-1/2 years ago, when I was first diagnosed. I began treatment, and like most people, I didn’t feel a thing. In my mind, I might as well have been taking a Flintstones vitamin for all the “beneficial effects” I was feeling. Nevertheless, I stuck with it, with the hope that it might be doing something deep inside that I wasn’t aware of.
5-1/2 years later I’m still Stage 1. My right hand tremor (which was my original symptom) is getting worse, but most people don’t notice it. I’m a little stiffer, but not bad. I still party, still dance, still play guitar and sing, still do 95% of the driving when we go out. In fact, until I tell people, they don’t know I even have a disease.
So, is it the Azilect? I have no idea. But I’m certainly not going to quit taking it just because I don’t feel any miraculous effect from it. Yes, it took me a few weeks to adjust to it (as I recall), but it’s a small price to pay for what I THINK I got from it all these years later.
By the way, I get it from Canada for $300 for 90 days. Originally I was paying $300 a MONTH to get it from the USA!!!!! Dang, I’m really surprised I was willing to pay that much, but I’m glad I did. The Canada site I get it from is Discount Med Direct, 941-355-7887, out of Sarasota, Florida. There might be other places too.
If you have anything you want to ask me, go ahead. I have NO “dog in the race”, so to speak, and don’t care if you don’t want to take it. I just think it MIGHT be why my progression has been slow……
February 7, 2020 at 9:54 am #17769Scott MilsteinMember
I just was diagnosed in September. But I’m on Rasagline, the generic Azilect.
I feel exactly the way you do. Everything at this point is the same. My PT takes it and says the same thing. It will be interesting for all of us as time moves on. I’m glad it’s at least maintaining the status quo.
Keep us up to date. I’ll do the same
January 17, 2023 at 2:54 pm #25848Jon BuschParticipant
I was diagnosed in 2009 and was put on Azilect at that time. Due to high cost ($300 a month) my neurologist put me on generic carbs-levo dopa (25/100) and I have been on it ever since. A few years ago I was able to get generic Azilect out of Canada for $90 peer month (Sun Pharma out of India). I’m on 1mg daily and I notice nothing. About five months ago I started getting dyskinesia (uncontrollable tremor). This is very depressing and debilitating. My neurologist put me on Nourianz just prior to to the beginnings of tremor but at %500 a month ( not covered by insurance) I stopped taking it – besides it seemed ineffective. I am still physically active going to the gym every other day. (30 minutes treadmill plus limited resistance). It takes me a full day for recovery. If anybody has found anything that is effective treating tremor I’d love to hear it.
February 11, 2020 at 1:39 pm #17807
I’ve been on generic Azilect for 3 years. It improved stiffness and constipation, and I’ve had no side effects. I’ll keep taking it.
February 12, 2020 at 1:49 am #17818Lou HevlyParticipant
I take Azilect 1g daily along with Sinemet 3 x daily in the hope that it will delay the need to increase the Sinemet dosis in the future. I haven’t tried leaving off the Azilect to see how much worse it might get because I’m still experimenting to see whether an increase in magnesium intake –via almonds, cashews, peanuts and spinach– will somewhat relieve the RLS (Restless Leg Syndrome). However, I have sporadic insomnia and this is also a factor. So I don’t want to add any other factors in the mix till I figure out whether the diet change is having an effect.
February 12, 2020 at 5:47 am #17819
@Lou Hevly, I eat lots of all the foods you mention, but it wasn’t until I started taking a magnesium malate pill (200 mg, which I take with dinner) that I found relief. If I forget to take the pill with dinner, I’m generally woken by my legs. I’ve found that it doesn’t work very well if I take it at breakfast. I need whatever sleep I can get, so I’m happy to take it with dinner.
I get that you’d prefer not to take still another pill – and diet may work for you. I’m just telling you what worked for me.
February 12, 2020 at 9:48 am #17823
February 12, 2020 at 11:46 am #17829
@Lou Oops typo. 400 mg.
February 12, 2020 at 1:57 pm #17833Gail DonsParticipant
A number of years ago, a study was done that implied that 1mg/day of rasagiline(Azilect) slowed the progression of PD. Everyone was excited. Then a study was done with 2mg/day – and it did not show any slowing of disease progress. THat said, when I became a PwP, I wanted to take Azilect 1 mg – just ic case it really was a little neuroprotection. I didn’t notice a lot of effect, except I stopped stumbling so much and I was swinging my right hand a little when I walked without thinking about it. About 6 mos later, after significant resistance on my part, and great time and patience from my MDs, I added Sinemet 1 in AM and 1/2 5, 10 hrs later. 7 years later, I am stil on the Azilect, and my Sinemet dose is only 1 TID. I am still working actively in my profession (I am an obstetrician and gynecologic surgeon). I do not hide the fact that I have PD, but people say they would never know if I didn’t tell them (OK, so I do keep that somewhat twitchy R foot out of sight!)
Is it the Azilect? Or has God merely blessed me with a slow progression? Don’t know, but I am glad to stay on it for the ride!
February 12, 2020 at 2:39 pm #17834Mike PParticipant
I’m 47 years old and I’ve been on 1mg daily generic Azilect for 2.5 years. Like most others, I have not noticed any PD symptom improvement from Azilect. I’ve tried dopamine agonists, amantadine, Artane, generic Sinemet, and Rytary. I had to stop the dopamine agonists, Artane, and amantadine due to side effects. Rytary didn’t work for me any better than generic Sinemet, so I’m only on 1mg Azilect once daily and 1 tablet of 25/100 generic Sinemet twice daily. I have never felt much better from any PD meds but I feel worse if I don’t take them. My MDS recommends I keep taking it in case the neuroprotective benefits are proven. I have no side effects from Azilect so I keep taking it just in case.
February 13, 2020 at 3:16 pm #17851DAR DARParticipant
My husband has just been confirmed to have PD (after DATscan). The dr. has had him on Sinemet (3x/day) for a few weeks, though, until we could get the DATscan. He has now prescribed Azilect to take in conjunction with the Sinemet. The pharmacist told my husband that he needed to avoid chocolate, wine, and cheese while on Azilect. In researching the medicine, I understand this is due to tyramine. I have seen differing information on what you can and can’t/shouldn’t eat while on Azilect, so I am wondering about other people’s experiences with Azilect and how you have changed your diet and/or any effects. Any insights will be most appreciated.
February 13, 2020 at 3:25 pm #17852Scott MilsteinMember
I’ve been on it for about 4 months. I read that red wine and draft beer were the culprits. However my Neuro and my Pt( who incidentally also has PD)say it’s okto have a glass of Red wine or draft beer. Very confusing
February 13, 2020 at 3:47 pm #17854Mike PParticipant
Let me preface this by saying I am not a doctor and this information should be confirmed with your husband’s doctor and other pharmacists:
Before the MAO-B inhibitor Azilect (rasagiline) (approved 2006), another drug named selegiline (approved 1989) was widely prescribed as an MAO-B inhibitor. Selegiline had tyramine warnings and interactions. When Azilect was first approved it carried the same tyramine warnings since it was the same class of medication. After a sizeable population had used Azilect for a number of years I believe the FDA revised the prescribing information for Azilect to remove the tyramine dietary restrictions. I think doctors and pharmacists still advise caution out of an overabundance of caution. I wouldn’t eat a lot of stilton cheese but anything else should be fine. I’ve never had any issues over the past 2.5 years. Again, please verify with your doctor and do your own research.
Another advantage of Azilect over Selegiline is that Selegiline breaks down into the metabolites methamphetamine and amphetamine which causes insomnia. Metabolism of Azilect is different and doesn’t have these same metabolites and doesn’t have the same insomnia issues that people experienced with Selegiline.
Think of Azilect as a new and improved version of the older MAO-B inhibitor Selegiline.
The thing you really need to pay attention to with any MAO-B inhibitor including Azilect are the drug interactions! Always check with your pharmacist before taking anything, even OTC meds and herbal remedies while on Azilect. It interacts with dextromethorphan (cough syrup), tramadol, St John’s wort, Flexeril, sinus meds, Visine eye drops, etc. My doctor told me to tell my dentist to use lidocaine only for fillings and avoid anything with epinephrine which includes almost every standard anesthetic used by dentists except plain lidocaine. Before any surgery, your husband may need to discontinue Azilect for a couple of weeks to avoid interactions with anesthesia meds.
Hope this helps.
February 13, 2020 at 5:39 pm #17858DAR DARParticipant
Scott and Mike, thanks for your comments. I understand, Mike, that you are only sharing your experience. Obviously it can be different for everyone and we have to make our own decisions. That’s crazy to hear about Visine . . . really?! I am still interested to hear from anyone else that takes Azilect with regard to your diet and any changes you felt you needed to make or any reactions you had while on it. Thanks very much.
February 13, 2020 at 6:41 pm #17864Gail DonsParticipant
I have been on Azilect for 6+ years. I have not changed my diet. I eat salami, sauerkraut, cheese, drink caffeinated beverages and wine as usual (OK, I’m not a big wine drinker, but I do like my cheese!) I have had no problems. Mike P is correct about Azilect being a selective MAO-B inhibitor and any dietary interactions are not as prominent. However, you really do need to check for interactions with both prescription and over-the-counter meds.
February 14, 2020 at 10:37 am #17869Michael JaffeParticipant
I used azilect for about 6 months and it started making me sick and I quit. No change in symptoms except I felt better, although I did think the drug made me more co-ordinated. BTW – the drug company you recommend from Florida is not a Canadian company at all and quotd the highest price I have ever seen for Rytary!
February 18, 2020 at 1:32 pm #17920DavidParticipant
I have taken rasagiline (Azilect or its generic form) for over a decade, without any problems. The price dropped when it went generic, and should drop further when manufacturers other than Teva (the original patent-holder) become available. I do not notice any strong effect from stopping or resuming rasagiline, but I stick with it because the clinical trials showed benefits, and I have not had any adverse effects.
What “negative stuff” have you read about rasagiline or Azilect, aside from it being expensive and having weak beneficial effects?
February 19, 2020 at 8:42 am #17959Michael JaffeParticipant
Haven’t read anything negative about it. Woulds like to be taking it but, as I said, it made me sick, nauseous and weird. Symptoms went away immediately upon quiting the drug. ?????
February 20, 2020 at 2:55 pm #17978Robert HarrisParticipant
I have been taking 1 mg rasagiline / Azilect for somewhere near 15 years (the entire time I have been diagnosed with PD. Early on, I did some research and discovered what you others have found, that as an MA0-B inhibitor it is generally considered safe. (Remember, though, that people differ==some people are fatally allergic to peanuts.) I have not changed my diet, and eat cheddar cheese and even occasionally Asiago cheese. At one point a few years ago, my neurologist and I decided to test the effects of medication change, and I stopped taking rasagiline for a short while. I did notice the difference so I resumed it.
(When I first started Mirapex / pramipexole, the doctor put me on 2.5 mg times a day. I did the same research as on the rasagiline and found out that amounts greater than 1 mg three times a day were not any or much better than 1 mg. So I cut the dosage from 2.5 tid to 1 tid. However, pramipexole made me so sleepy that eventually I stopped it altogether. Then when insomnia reared its ugly head, I went back to taking 1 mt at bedtime to help me sleep. After a while, I stopped it completely again and haven’t taken it since.
My advice is to work with your neurologist to experiment with your meds and see what works for you. Sometimes when I hit a low point (off time or exaustion time–such as after eating too much protein for breakfast–I will take an extra 12.5/50 carbidopa/levodopa and that helps a lot.
My previous neurologist added entacapone to my growing handful of medications without explaining why. I hope soon to ask my new neuro and see if we should experiment with dropping it, at least temporarily.
The goal is to take the least amount of medicine that will bring the maximum benefit and the least side effects.
February 21, 2020 at 5:20 pm #17990Patricia B WargoParticipant
I have been taking Azilect, and more recently, Rasagaline for 15 years with no ill effects or reactions to it. Yes, I have continued to eat cheeses with no problems occurring. Since I had DBS surgery 5 years ago, I am down to taking meds 3 times per day as opposed to 5 times per day, with no wearing off as I’d been experiencing prior to the DBS. The settings on the DBS are moderate and continue to be beneficial. I consider myself fortunate to be maintaining as welll as I do, but I also attribute that to participating in Rock Steady Boxing classes and support groups for myself and my husband.
February 25, 2020 at 7:19 pm #18017Rebecca “Becky” AdamsParticipant
How about Ropinirole? Has anyone gone from it to Azilect? I’m asking because I take 6 mg. Of ropernerole Er once a day at night.i also take 16 Rytary 90-148:mg. Spread at 4 , 4 imes per day. When I first began the Rytary , I was on sinimet before, I immediately felt most of my rigidity lifted .. I could rolll over in bed, turn my neck easily to see traffic and a bunch of other things..also my balance , although not perfect was better….well in the last 9 months I’ve fallen at least 2 times per month and have broken my wrist and knee cap…… do you think I should ask my MDs bout Azilect , replacing the ropinirole with it?
I do RSB 3 times per week and have fallen twice during it, once was when I broke my wrist.
July 24, 2020 at 6:46 am #19055Robin LLoyd KaplanParticipant
I am new to this forum, so please bear with me. I was diagnosed with PD ten years ago. My initial symptoms were mild stiffness and slowness of gait and micrographia. I was initially treated with Azilect alone with a starting dose of 0.5 mg once a day. Unlike most of the other forum members. I experienced immediate improvement in my stiffness and gait disturbance, and when the dosage was increased to 1 mg per day (in the morning), the improvement in my stiffness and gait was complete. Sadly, no effect was observed on my micrographia, which continues to be a distressing symptom of PD. Over the course of the last ten years, more medications have been prescribed to treat additional symptoms of PD. I currently am taking Sinemet 25/100 3 tablets three times a day, plus 2 tablets of Sinemet ER at bedtime, ropinerole ER 12 mg a day, in addition to the Azilect (rasagiline generic) 1 mg everyday. I have debilitating stiffness and balance issues, to the point that I now use a walker whenever I leave my house. I also have severe dysphonia, and I am currently enrolled in the LSVT LOUD program of speech therapy, an intensive program designed for PD patients with dysphonia. Oddly, at no time have I been afflicted with tremors. I have considered DBS treatment, but I am not a good candidate for that treatment modality. because I lack tremors, and DBS experience includes worsening of balance issues with that mode of treatment, which would increase the risk of falling, which I already experience three to four times a week. Fortunately, I have not injured myself because I have usually fallen on my butt. NO broken bones, yet.
Does anyone have any suggestions for me?
January 15, 2023 at 6:54 pm #25839JillParticipant
Robin I know this is going to sound very hard but if you can find any way to add on exercise to get your heart pumping it may help. TV offers chair exercises you could do at home for starters.Keep moving is my theory.It slows progression.
January 17, 2023 at 6:42 pm #25854WobblygirlParticipant
I’ve been taking Azilect 1mg and Madopar 125 3x per day for four and a half years. So far no progession in symptoms. I’m not sure whether it’s the meds or daily exercise, but I’m not changing anything. I’m certainly much better than I was before starting treatment. I went off chocolate completely for the first four years but I can now eat a small piece. I drink a glass of red wine every night with dinner. I find full fat cheese makes me feel sick but I’m OK with hard cheeses.
January 17, 2023 at 7:55 pm #25855JoannaParticipant
I was diagnosed in November of 2021, but have had symptoms since 2014. I started on Rasagiline (generic for Azilect) a year ago, and within 1 week I noticed a major difference. I have an overall sense of calm. The fatigue and depression dissipated. No more brain fog. I have normal energy again. I feel like myself now. I can write again, too. My tremors aren’t gone, but mostly are not there. Only when I’m cold or nervous. Also, this is the only medication i take. My understanding of this medication, is they believe it might slow down progression of the PD. It appears you have experienced that. My neurologist is quite pleased with where I am, and has told me I should expect little to minor progression at this point, since I have stabilized. I have zero side effects, too.
January 18, 2023 at 8:38 am #25850CatParticipant
Very informative thread! Happy to hear about the possible neuroprotective benefits of Azilect/rasagiline
I have had PD for 7 years…Minimal tremors, but have stiffness and slowness and my gait is off.
My MDS suggested Rasagaline a few years back when I balked at the idea of increasing my C/L for fear the dyskinesias would increase with the dosage . At that point, the only meds I was on was 5 C/L (25/100) 3 times a day…2/1.5/1.5, but I was doing a dyskinesia dance when I flossed 🙂 and other silly movements (L foot tapping) that I wasn’t enjoying… I also didn’t really notice any major changes except the floss dance lessened…still tap the L foot.
We are now experimenting with Amantadine (2x/day) for the dyskinesias and akathesia is becoming an issue (weird ‘restless arm’ feeling)..seems to help with both, but now having sleep issues… hating the buildup of my med arsenal as with it comes additional side effects…sigh. I AM eager to try the Stanford vibrating gloves as a possible therapy discussed in another thread in this newsletter though!
January 19, 2023 at 2:25 pm #25869Eve L HowardParticipant
Hello folks, A few thoughts:
I have been on Rasagiline for 2.5 years with great results/no side effects. Along with limiting alcohol and amping up the exercise it seems to have eliminated for the most part the slight: leg tremor, the foot dystonia, the stiff gait and torso, and any imbalance I had. I only take this and a beta blocker (for the tremor). I get 3 months supply at a time and use a coupon/program offered by the state of Calif (my pharmacist found it at CVS) for about $130.00. My Dr. prescribed saying it might help symptoms and it might help slow progression. Unclear what % it is aiding in those areas, but it does seem to help steady me and my progression has basically been nil so far. My suspicion is that EXERCISE, Right MEDS COMBO, limit the ALCOHOL is key for my type of Parkinson’s (Tremor, motor, benign) at 64.
January 19, 2023 at 2:48 pm #25870James LakeParticipant
I have had tremors for years and it runs with males in my family. I stumbled onto a natural product that treats it pretty well for about 8 hours. It is very safe. What is it? I take 1.8grams of lecithin (3 liquid filled capsules) once a day and 1.2grams at night. It works in about 45 minutes.
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