I have been reading about this drug which claims to slow down deterioration due to Parkinsons.
I would be grateful to hear from people on Azilect and whether they have noticed any difference in their condition. I am determined to go to my next appointment with my Consultant, or whoever I see, armed with questions and information to support these. I usually go in the room to be greeted with 'how are you feeling?, to which I respond 'not too bad'. Answer the usual questions, ask a few things and leave - all within a short space of time.
I always forget to ask anything which I thought of and leave, making another appointment in six months time. This time it is going to be different - well I will try my best.
However, back to my question. I am really interested in hearing people's experiences, both good and bad with Azilect. I assume this is a fairly new drug and, of course, may not be suitable for me. But at least I will know.
Thanks.
Written by
Court
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After DX, 2 1/2 years ago, the brain doc started me on Azile$t because it was supposed to be neuro-protective. It did little or nothing for symptomatic relief. I subsequently added C/L ER which addressed my symptoms fairly well.
At my visit this week to the brain doc, he suggested stopping the Azile$t because the claims of protectivity could not be documented and because of the excessive cost of the pill, he could no longer recommend it. I am going to cut my 1mg pills in half and phase out my remaining stash. If I feel okay, I will drop it completely and maybe replace it with Selegaline.
I had no side effects from the pill (other than feeling poorer).
I have MSA-Parkinson's , not regular Parkinson.s. it amuses me to go. FindI took Azilect for just one week. I experienced a lot of dyskinesia, so, I stopped.
it is another disease that mimics Parkinson's. At first they thought it was Parkinson's but it has slightly different symptoms.Parkinson's medications don't work at all and the prognosis is much shorter than regular Parkinson's. Most doctors don't know very much about this disease. So you are just left to die. That is why I desperately want to meet someone who has this disease and discover how they are coping.
Sounds not good. I recommend trying the whole body healing ..naturpath, homeopath, herbalist and applied kinesiologist....detoxing your body..you probably like me have picked up too many heavy metals.. Hes put me on zinc to clear my mercury..as a start! Try it out and get tested it cannot do any harm..these meds seem to offer more side effects than relief! I know it costs but we are worth it!
Can and you tell me more about naturpath,homeopath, herbalists, and applied kinesiology. I do not know any of these. What do they do and where should I look for to find one? Thanks for your input.
i too have msa...some of my Drs.do not know what it is.
my story is just like yours. since I started taking Sinemet I have been doing much better. the only major problem is i have is less energy, any the brain is not as sharp as before..if you wish to share more about your situation, meds, how it has changed your life, etc..it might help me.
i have never met or had contact with any person with msa.
.you can also contact me @ ritahelene@verizon.net.
that was my first meds that i took, they is no side effects at least for me. it let me move better and helped a lot in the beginning. i still take it but have to take requip now so im not sure if it still works for me as well but really liked it in the beginning, noticed a big difference..
My neuro added requip when I had started to be symptomatic after about 5 months on Azilect. I could not tell that the requip did anything for me. Cases are so individual.
I take 1MG of Azilect @ bedtime, only. Works good for me...stelevo 50MG & comtan 200MG, twice a day. I had a come apart yesterday, stiff or ridged, very weepy. Don't know what hit me, I mostly have good days with azilect and my other meds.
Yes the doctor put me on Azliect and after a time on this drug there was not enough change to satisfy the doctor of the co$t of thi$ drug $so he di$continued it. I can't say it helped and I can't say it hurt except in the pocket book. Dennis
I have been on Azilect since July 2006. When I started I was Stage one unilateral PD. I am still Stage one unilateral PD. I have no adverse side effects and I also take Amantidine and Mirapex. Because my PD was young onset my Neurologist started me on these drugs to delay having to move to dopamine . I would say for me, that strategy has worked but everyone is different.
I started Azilect when they advertised that it slows the progression of PD, then went off it when the continuing experiments showed that claim was not justified. My doctor told me it would take 6 weeks to get out of my system and it did. At first it was hard, but within a couple of weeks I barely noticed the difference and now (2 months) I notice no difference. My doctor told me there might be a 10% benefit from taking the drug. I'm on RequipXL 6 mg now and will drop to 4 in a couple of weeks. I was at 4 when I also had Azilect and bumped to 6 to counteract any withdrawal from Azilect. Cycling (see pedalingforparkinsons.org) is the best thing you can do for yourself. I'm stronger and more fit now than I ever was and I'm 66 and 4 years into PD.
Hi , I was reading ur post on azilect , i too have come off it after two weeks of taking it , it caused blurry vision dizziness and I fel depressed, i also have stopped taking neupropatch , i go on an exercise bike cause my legs are feeling weak , how long did it take before u felt stronger ?
Hi , I was reading ur post on azilect , i too have come off it after two weeks of taking it , it caused blurry vision dizziness and I fel depressed, i also have stopped taking neupropatch , i go on an exercise bike cause my legs are feeling weak , how long did it take before u felt stronger ?
I asked neuro abt sinemet and I could have tried it, but didn't know what to do cause I'm taking madopar and she said it's mostly the same drug ..
The reason I'm saying abt the cycling is cause when I was on 12mg of neupropatch I had 7. Falls I was too medicated but now I've lost my confidence and I'm so scared ill fall again I'm literally holding on to things around the house to get abt , I know it sounds silly , so really not done myself any favours cause I've made my legs weaker by sitting down too much, just because of the fear of falling ...
I've gotta get myself sorted as I'm getting married in nov 3
I'm not a medical doctor but I would recommend that you use a stationary bike so you won't fall and get busy building up those muscles and your confidence. Don't want to risk falling
janab > MSA-Parkinson's .... it is another disease that mimics Parkinson's. ...
janab > and the prognosis is much shorter than regular Parkinson's
Sorry to hear that . I hope you get some good news.
That reminded me of the news item that Lou Gehrig may not have had Lou Gehrig's disease. The item said there were about 10 or 12 variations of LG--like diseases that he may have had one of.
My neurologist started me on Azilect before approval in the U.S. I ordered it thru Canada at $600.00 per month. At first it seemed to reverse some symptoms. I went off of Azilect twice. The 2nd time, I developed severe stiffness. Seems like Azilect does not like it when you stop taking Amantadine. Now I am off both meds and having stiffness, lack of energy, and passing out at times. Read the side effects of using Azilect so you know what not to do in the future. Try drugstore.com for info.
I have taken Azilect since my diagnosis last year, retrospectively, my sypmtoms started 8 yrs. ago.
It significantly decreased my tremor and my head cleared. I did have significant high and low blood pressures in the beginning. I tried to go back to work when I was feeling better, but became very symptomatic with the stress. My MD had already told me I could not work, I just had to prove it to myself.
Azilect is very expensive, about $700.00/month. Due to my circumstances, I get it for free from the manufacturer. You also must be well informed about the foods and meds that are contraindicated with it, if you are not aware of these restrictions, the med can cause a hypertensive crisis.
The most recent information I have read does not substantiate the protective action of Azilect, though I think there are individual cases where it is beneficial. What I do like is I am not taking meds every hrs. and don't have to plan my meals, etc. around my medication.
Wanted to add, I was stage II with some stage III symptoms. I would say that I am pretty much stage III now, so it would appear that there is not a protective function. For me, the tremors are significantly decreased, but the balance and cognitive issues have advanced quickly.
My husband is in the early stages of PD. He began w amantadine which controlled 80per cent of his symptoms. Later Azilect was added. Months later he was taken off amantadine. Because of sleep issues. We have been surprised that many of his original symptoms haven't come back yet. He has been off amantadine 6 months & some symptoms are slowly starting back up. Azilect isn't as promising as drs. Hoped it would be, but we think it has slowed my husband's progression. It is supposed to work on the dopamine. (by increasing it, I think.). Our insurance covers part of the expense. Hopefully Medicare will cover some too.
I have taken the Azilect for four months and has helped the symptoms. I imagine that L-dopa would be more helpful, but I thought I would save that big gun until later. Have no side effects on Azilect and my mood and mental capacities much better, voice is stronger, tremor is basically controlled. I read the study and although they could not prove the neuroprotective nature of Azilect, it was not really disprooved either. It's pretty hard to prove. It is going to be generic fairly soon, I found the cheapest at Costco.
my doctor recommended this beauty a couple years ago. My co-pay was $250 for a three-month supply. I noticed no improvement whatsoever. I was going to pay that much money for a claim of protective capabilities. One thing I did notice it may have smelly sweat. Very bad. I was trying various deodorants but nothing would help. After I quit taking the drug the smell stopped.
Hi Court, I agree with what Moderator 1 had to say: " The original claims made about it (Azilect) being neuroprotective have not been proven." Although the FDA (in the USA) approved Azilect for stand alone and adjunct use in treating PD in 2006, they have been in a pissing contest since 2008 with Teva Pharmaceuticals, the producer of Azilect, over the question of neuroprotection. Briefly, Teva claims yes, based on a study in which subjects taking a 1 mg dose apparently showed some neuroprotective value; on the other hand, the FDA claims no, based on the fact that in the same study, subjects taking a 2 mg dose apparently showed no neuroprotective value. ?? Go figure. For myself, I’d hate to reject taking it now, only to find out in a few years, that Teva was correct. So until this conundrum is settled, and as long as I have no serious side effecs, I’ll spend the extras $$ and continue to take it.
I have been taking 1 mg of Azilect for 4 yrs ( diagnosed 7 yrs) My Neurologist can't believe how well I'm doing. He said it is the only drug for PD proven to slow the progression. When I started going to him 4 yrs ago, he never thought I'd be doing this great. Co-pay is high, but well worth it!
I was diagnosed 11 years ago and took sinemet comtan and requip for about 3 years. I shuffled when I WALKED AND HAD BALANCE PROBLEMS. I added Azilect and within 1/2 day I felt better, walked better, and my balance problems lessened dramatically.. Still taking it as of today.
I have just found my original question, which was three years ago. Thank all of you for adding to it. I will read all the replies which will take time and see if I can add anything more.
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Azilect
Azilect 
AZILECT
Has anyone had issues with balance getting worse on Azilect?
Question to those taking Azilect: How effective has Azilect been for you? Have you found that the effect diminishes over time? 
