Is anyone on AZILECT ??: I think it is a... - Cure Parkinson's

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Is anyone on AZILECT ??

JAYNIE profile image
52 Replies

I think it is a miracal drug............has not cured me for sure, but I feel it has kept me from getting worse, it has slowed it down..........

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JAYNIE
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52 Replies
LawrenceM profile image
LawrenceM

I take 1 mg every morning. Has helped a lot.

JAYNIE profile image
JAYNIE in reply to LawrenceM

that is what I take also.......... thanks Lawrence.

Dennis profile image
Dennis in reply to LawrenceM

Lawrence- how does azilect help? Neuro just put me on it a few days ago. i take it one time in am.

Susie01 profile image
Susie01 in reply to Dennis

I take 1 mg daily, in the a.m. It made me drowsy initially. There is an opinion that it may help to preserve dopamine cells, depends on what research you read.

Some things to be aware of: You must be careful about the foods you eat while taking the drug. It can cause hypertensive crisis if you eat certain foods, mostly pickeled or aged (meats, cheeses, etc.)

Within three days of starting azilect, my tremors had decreased markedly and my mind started to clear. It is difficult to tell what are the side effects and what is just PD. I have speech, balance and hypotensive problems, may be the PD or the Azilect. An earlier post I did was on gingivitis, some studies show this can be a side effect.

As you may already know, it is very expensive.

Dennis profile image
Dennis in reply to Susie01

After only a week on Azilect I do not notice much yet. The Neuro gave me samples asI understand Azilect is $300 per script. One thing I have noticed and do not know why it happens but when I read the blogs the PD

symptomns becomes active even though the entries are most encouraging and educational and to me helpful! Dennis

p-oui profile image
p-oui in reply to Susie01

Hi, I started selegiline about one week ago and then my migraine doctor (not my movement disorder specialist / neurologist) said I should switch to rasagiline / Azilect because it is superior, including in terms of food interactions. I switched 3 days ago though I liked the effect of selegiline (reduced tremor, more energy).

I was glad to read your post Susie01 because I am on my third day with Azilect and I am very drowsy today and had difficulty getting through my morning walk. I hope for a breakthrough tomorrow. My only symptom really is tremor (hand), newly diagnosed, and Azilect seems like a good starter med.

Odette profile image
Odette

I have tried to start Azilect twice, but for me it did not match. I got pain on ankles and knees. I got problems with bodybalance and started to fall down now and then. Ever since I have got that problem.

JAYNIE profile image
JAYNIE in reply to Odette

you are sure it is the Azilect??? Have you tried the balance bracelets and magnet bracelets?? I also have insoles for my shoes with magnets. people laugh at it, but it truly helps me. sorry the azilect does not work as I really think it is my miracle pill.

p-oui profile image
p-oui in reply to JAYNIE

Jaynie, how have you found the Azilect?

Odette profile image
Odette

That´s why I tried to start second time, I wanted to be sure it was Azilect. The pain in joints came back, about the balanceproblems can`t be sure.. but they started at same time with A. first time I started it.

I have personal insoles in my shoes, that helps a lot, but no magnets...Sorry. I am a bit skeptic about it. ;)

Beachdog profile image
Beachdog

I take 1mg of Azile$t in the morning with no side effects. My frustration is I have no idea if it is doing anything but draining my bank account (even with insurance). If it is neuroprotective, I hope it is working but how do you know? It never had much impact on symptoms when I was on Azilect alone. The C/L addressed the symptoms for me.

Susie01 profile image
Susie01

I also take azilect, 1 mg daily. It was pretty remarkable in the beginning, took away most of the tremors and my head seemed to clear. About 3 wks into it, I had some very high and very low blood pressures. That has evened out for the most part.

I too have balance and speech issues and lots of cognitive issues. I do not know how to distinguish whether it is the azilect or the PD, What I do know is the symptoms were so severe before the azilect that I would be scared to death to go off of it. I was stage II at diagnosis.

My financial situation is horrible, no insurance and my MD says I can no longer work as a nurse. I get my medication free from the manufacturer. Only problem is it has to be sent to my Neurologist office which is 2 hrs. away, they give me 3 months supply at a time.

jazzfan53 profile image
jazzfan53

I was on it for awhile but I noticed no improvement. Since it was so expensive, I asked my neuro to switch me to something generic. That was 5 years ago.

Beachdog profile image
Beachdog in reply to jazzfan53

That will be my game plan next visit to the brain doc ... I believe selegiline (SP) may be a generic version

p-oui profile image
p-oui in reply to jazzfan53

Did he switch you to selegiline?

How has it worked?

Hikoi profile image
Hikoi

Hi Jaynie

I found giving up red wine, salami and Camembert quite a sacrifice so came off Azilect! (Not the only reason)

I understood that Azlect (rasageline) was used alone in early diagnosis, or to enhance the action of levadopa medication later on. The earlier drug Selegiline is still in use too. They are different medication but the same family (MAO-B inhibitors).

Azilect is quite new. In the early days it was thought to be neuro protective but this hasn't been confimed.

p-oui profile image
p-oui in reply to Hikoi

Hi Hikoi, I did make the switch to Azilect from Selegiline at my neurologist's prompting and have no intention of giving up red wine but I will stay away from Chianti and aged cheese and meat. They have lightened earlier warnings considerably and my neurologist said Azilect is much better for food interactions than Selegiline. I haven't found research to support this online but trust my neurologist is better informed than I am. Definitely I will miss bleu cheese but hope and pray Azilect slows progression. Day 3 I am quite groggy. i loved the Selegiline and hope Azilect works well once I adjust.

Hikoi profile image
Hikoi in reply to p-oui

If you find my recent post with the two different links to patient info for Azilect you may find you can keep eating that aged cheese and salami, in moderation, - that is if you read the UK version.

I think the danger is proving to be theoretical rather than actual.

Selegiline metabolises to amphetimine related substance I think, unfortunately no such luck with rasageline :)

p-oui profile image
p-oui in reply to Hikoi

Yes, I understand it similarly though I was still afraid of eating bleu cheese, however, delighted to hear that it can be eaten in moderation. I liked the amphetamine effect of selegiline. It made exercising much easier. I have wondered about combining the amphetamine back into rasagiline for that purpose though I understand eliminating the amphetamine from rasagiline / Azilect may be what makes it "cleaner" and a possible neuroprotective. Today already though I feel the grogginess of Azilect lifting. I look at exercise now as a medication. So it is important to have an RX that makes it possible... Thanks for your message and link Hikoi.

Dennis profile image
Dennis

Thank you for the comments concerning Azilect--helpful.

blackcat profile image
blackcat

i have been on 1 mg azilect daily since i was dx but i was put on other medication at the same time so i am not sure how much it helped. at one time i really had problems with staying awake and horrible balance and nausea so i stopped everything and started my self back on the meds one at a time here it turned out to be the ambilfy that i wasn't really taken for the pd. when i was off the aziiect i did have a lot more brain fog and confusion/

PatV profile image
PatV

I tried it while on SInemet (can't remember if I was titrating ) but dyskinesia got SO bad, had to stop. It works for some I know.

MagicMax profile image
MagicMax

When first diagnosed, my neurologist started me on Azilect and Mirapex. The Azilect seemed to reverse some of the symptoms, but Mirapex made things worse. Stopped taking Mirapex and started taking Exelon, and it was like I never had PD. I ran out of Azilect and money. Had to go without Azilect for 3 weeks. When I started back on Azilect, I started having severe stiffness. Started taking Trihexiphenydol, and things are getting better. My neurologist thinks that Azilect is the same as Segiline. I tried it and tend to agree. The patent runs out on Azilect in Feb. 2012, so hopefully generic versions will appear on the market soon.

p-oui profile image
p-oui in reply to MagicMax

MagicMax, Azilect is expensive. For me it is $500 / month and my deductible is high since I have always been lucky and in good health until my recent PD dx, about 3 months ago. That is why I started with Selegiline which, as I mentioned, I liked v. much. My migraine neuro feels strongly about switching to Rasagiline as a potential neuroprotective and I believe I'll get to my deductible soon and then it will be covered. I also plan to look into SSI government benefits which may help offset the expenses. I am younger for PD, 50's. You might want to check into that as well - it is not age dependent. Meanwhile you might also try Selegiline. I am not familiar with the other meds you mention. I am also curious about glutathione.

"Early research efforts toward intranasal glutathione showed that it is safe, well tolerated and raises levels of glutathione in the brain (as seen on imaging scans). An MJFF-funded Phase IIb placebo-controlled trial is currently examining the effects of intranasal glutathione on Parkinson’s symptoms (both motor and non-motor). Regardless of these results (expected in 2016), Phase III trials will be designed to determine whether intranasal glutathione has a disease-modifying effect in PD."

Jose profile image
Jose

I was but stopped two years ago to follow my dentist's "command" not to continue. The reason he said was that the med might interfere with the immune system which would not reject infection. I was having surgery, i.e., bone grafts and prep for dental implants. For the same reason, the dentist also made me stop two other meds prescribed for spinal disease. After implants are done I intend to inquire abour getting back on Azilect. But, only time will tell if it works or not.

Hikoi profile image
Hikoi

parkinsons.org.uk/about_par...

A short review Of MAO_B inhibitors from parkinsons uk and a recent statement by FDA regarding Azilect.

pharmatimes.com/Article/11-...

Dennis profile image
Dennis

My Neurologist started me on Azilect today; so I actually take it tomorrow AM. At least that is what I understand. See if there is any change. All I do now seems to hit or miss during the day and about 4 PM I am "about done in". As the night goes on PD gets worse. It is frustrating. Dennis

JAYNIE profile image
JAYNIE

Dennis, it took me almost three months to notice the difference with the Azilect. I have been on it even before it became available here in the US. I had it sent from Israel. It seems to just keep me on an even Keel, I was diagnosed a little over 13 years ago, and I am not saying I have not gotten a little worse in those 13 years, but most people who know me do not know or notice unless I tell them.

I moved from the San Diego area to the Tucson Area two years ago.....and I am so thrilled with my new doctor, as I was so over medicated and had to take the Sinemet every hour........and I was rocking when sitting..........I was ready to have the implant done........then she asked me to see how long I could go with out the Sinemet, and just take the Requip XL 6mg. at night and the Azilect in the morning............and we have now evened it out to every 4 to 5 hours i take the Sinemet, and we changed the Requip XL to taking 2 in the morning and one at night........but I would Never stop the Azilect....... I am sure I am quite a bit older than you are, but I know how frustrating it is......... I want to play tennis like I used to and bowl etc..... but for now I am doing it on the WII. I do pretty well at it too. <grin>

I keep telling myself it could be worse.............and the glass is half full....one of my closest girlfriends died of ALS............and another had a stroke and can't do anything herself etc. So I feel pretty damn lucky !!! I have survived breast cancer and had my colon removed because of ulcerated colitius.....and I am still going strong..................frustrated ??? yup, but the alternative does not look so gr8....... anytime you want to talk, just let me know.

Jaynie

DebbieM profile image
DebbieM in reply to JAYNIE

Jaynie, you and I have about the same attitude!! I refer to my PD as "speed bumps" in my life!! I am only 53 and when I found out at 46 I had this "bump", at first I was terrified, then angry, then I thought "I WILL NOT let this get to me". With the support of family and friends, the "bumps" are still there but there is also someone helping me get over them if I can't do it alone!!!

I also take Requip XL and Azilect. I am having balancing issues since I started the Azilect, but I go to dr. in Jan. so it's on my list!!

Debbie

JAYNIE profile image
JAYNIE in reply to DebbieM

Hi Debbie,

You will probably laugh at this.......but I wear what the athlete's wear, the Power and Balance bracelets, one on each wrist. I also wear t wo magnet bracelets. (but not on my watch arm, as my watch would not like that) I also have magnet insoles and a pad under my bed sheet. I was going out of town a few months ago, and did not want to wear the bracelets so I took them off the night before I left. during the night, I got up to go to the bathroom, and almost fell over............I immediately went and put them back on, I don't care if people smerk or giggle or tease me, I think they help me and that is all that matters.

when I went to see my doctor, she did the test she always does where she gets behind me and pulls on my shoulders to make me lean or fall backwards........I did MUCH better with the magnets...and she noticed it.

How long have you been on Azilect??? I take Requip XL and the Sediment too. I am now on one REquip at night and two in the morning (6mg)

let me know how you are doing... where do you live??

Jaynie

DebbieM profile image
DebbieM in reply to JAYNIE

I'm in the Great state of Oklahoma,,or Okieland as some of us call it!!!! Laugh, not even..whatever works is a idea for someone else to try. I have been on Azilect for bout 8 months and RequipXL even longer. My right hand shakes as far as it goes. I am slow in somethings...I get so irritated cooking, which I love to do. Stirring, geezzz, I switch to my left hand till my right decides to work again,,,lol BUMP,,,,lol

JAYNIE profile image
JAYNIE in reply to DebbieM

sounds like we have the same attitude......!!!! I have to work around the PD....takes me much longer to dry off after a shower and much longer to get the darn pants and socks on.....so now I know I need at least one hour to shower , dress and dry the darn hair. I build miniature rooms, make gift cards and art work......does not look quite the same as I did even a year ago, but since I "think" I am an artist.....I am just in a "new phase" . LOL

Dennis profile image
Dennis

Started Azilect today, 12/23/11

Dennis profile image
Dennis

Jayne,

I too have had surgery for pre-cancer polps in the colon. My activities much less that prior PD. I do not but know I should exercise. I do not know what to expect from the Azilect. I am 68 and hope life improves. Dennis

JAYNIE profile image
JAYNIE

give it time Dennis...............at least 3 months before you decide.....I hope your life improves also..............

by the way...........yup, I am older...I just turned 73, 2 weeks ago. darn, it looks sooooooooo old when I read what I just typed. Please keep me posted on how you are doing....

where are you>>

Hikoi profile image
Hikoi

Dennis

Azilect is used as a first treatment in early stage Parkinsons . It is also used to make sinemet or madopar (levadopa) last longer and some people can actually reduce the amount of levadopa they required.

I guess you have read or been told about the dietary restrictions with Azilect. How are you finding it?

JAYNIE profile image
JAYNIE in reply to Hikoi

Hi,

I have been on Azilect for over 6 years, before it was available in the states....I was never told about any diet restrictions.............please share, thank you

Jaynie

Hikoi profile image
Hikoi in reply to JAYNIE

Hi Jaynie

I was referring to the so called 'Cheese reaction' which doesn't affect everyone. Looks like it is not is not a problem for you so that is good. The drug package insert should have information about the foods high in Tyramine, the ones that can give the reaction. If not there will be info on line.

I am glad Azilect is suiting you well. Most people I have talked to seem to find it good.

druginserts.com/lib/rx/meds...

or page 9 of this information sheet.

pharmacist.com/AM/Template....

Dennis profile image
Dennis in reply to Hikoi

Hikoi- thank you for your reply. Yes, I did read about dietary restrictions. Azilect seems to be "okay". Do not know if Azilect

has anything to do with it but about 3 or 4 pm I start going down

and seldom come back up even with meds. I just took my 6pm

meds and I have hurt almost all day. i can hardly type. Dennis

JAYNIE profile image
JAYNIE

thank you Hikoi !!!!!

joyceann profile image
joyceann

I was taking Azilect for almost 2 yrs. However, even with insurance, it cost me over $100 a month. So, I made the decision to stop taking it after my teaching job cut our salaries by 8% this year due to budget cuts.

Fortunately, I haven't noticed any change whatsoever. My physician says it's up to me, but he feels it's one of those drugs that people take without "instant gratification" and everyone expects that gratification nowadays. If I could afford it, I would still be taking it.

It is meant to slow the progression of Parkinson's and we don't really "feel" the effects, they're just there!!

JAYNIE profile image
JAYNIE in reply to joyceann

I am on Medicare, so us "old" people get a break on this.......cost wise that is.

Maria29 profile image
Maria29

Hi,

I started Azilect last week and I already see a difference ........less tremors and I seem to be more alert.

I hope it lasts awhile.

Maria

JAYNIE profile image
JAYNIE in reply to Maria29

I am so happy for you Maria. wow, only in one week you noticed the difference. It took me just about 3 months. I have been on it now for over 7 years.........do not want to be without it.

Keep a positive mental attitude........and keep me posted.

Jaynie

Maria29 profile image
Maria29 in reply to JAYNIE

Hi Jaynie,

It's not always easy to keep a positive attitude, especially when you are "missing out" on doing things with friends and family. However most of the time I am cheerful and I feel blessed to be living in a time when medications are available to help the symptoms and research is being done as we speak. Hope for a cure is important.

Maria

JAYNIE profile image
JAYNIE in reply to Maria29

I agree Maria, but I always try to see others that are much worse off than I am, and believe me, I have gone thru the wringer. Double Mastectomy, colon removed.........got Sepsis, and spent two months in the hospital, and so lucky I survived that at all..........but here I am, no....can't bowl anymore, can't play tennis, can't do a lot of things, but I can LIVE !!!!

jillfd profile image
jillfd

I was lucky to be put on Azilect right after it was approved by the FDA . It myst be over 5 years ago. I was already on roprinole and Sinemet. I noticed right away an that my overall function was better and that my days seemed "brighter ". Almost a mood elevator.

The best part is after rapid progress of symptoms my first 5 years after dx, once I started Azilect, the last 5 years have shown very little advance of symptoms and an actual decrease in amount of Sinemet used.

Count me as a fan . The research by Teva didn't prove to FDA clearly enough to allow marketing as a drug to slow progression of PD but that doesn't mean it doesn't , at least for some.

bawford profile image
bawford

Yes, love it and the wonderful chemist who used God's talent to make it. I ran out once and had to get 7 at local pharmcy. WOW $ 65. But it is worth every penny. Got off Meriplex - gained 35 lbs on it. Now I have lost that weight and feel great!!

JAYNIE profile image
JAYNIE in reply to bawford

I am like you.........I think it is my "wonder drug" I am in that confusing doughnut hole with my meds...........but I am very happy and wish I could stay there. I got my 30 Azilect pills for the nomth, and I paid only $18.36

instead of 348.85. When I first started it, about 7 or 8 yeaers agao, it was flown to me from Israel as it was not available here yet. I paid over 900.00 when I first started taking it. I don't care I won't stop using it.....

mccshe profile image
mccshe

I am finding myself so confused after reading all the comments about the different medications. I am on Azilect 1 mg. daily and mirapex 4.5mg ER. I am riddled with pain , stiffness in my joints.

I am feeling rather f'ing stupid! I just deal with my aches and pains, never attribute to medications!! I have just been so grateful for the ability to move again, i never question the meds for my pain, thanks to all . I have quite a list of things to discuss with my neurologist!!

Moderator_1 profile image
Moderator_1

MccShe

There are some excellent resources on the internet on medications.

Eg: parkinsons.org.uk/advice/pu...

Sunnysky profile image
Sunnysky

Hi Jaynie how are doing on Azilect now so many years later I just noticed the date on your post I have been on it for 1 month and my "OFf" times are virtually gone have heaps more energy and feel great just wondering how long it will last your input might be helpfull Sunnysky

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