Azilect

[michaela13]

Has anyone had a bad experience with azilect? I tried selegeline and had a lot of dyskinesia and trouble swallowing, but I think I needed to back off the sinimet. I would like to try again. I know a lot of people use this med. Also, anyone using LDN with good results?

[marion11005]

it's my understanding that azilect prolongs the effects of levodopa and that you need to decrease the amount of your sinemet for that reason--same with selegiline. Did your Dr tell you that?

[froggatt55]

Quite the contrary michaela13 - when I added Azilect to my Sinemet and Amantadine it quite literally changed my life. The Azilect seemed to make everything work and the cocktail still works today 6 years later (been diagnosed 11 years)

I waken up "On" albeit a bit slow but no tremor and completely clear headed - for example, we had run out of dried dog food so at 08.30 I got in the car and drove 15 miles (return), fed the dog, having toast and coffee and still not had my first cocktail - usually around 10.00.

I put this mostly down to the drugs and a strict exercise routine which sees me just turned 70 fit and fairly active

Excuse me going on but it is my mission in life to get PwP exercising

Kind regards and good luck with your meds

PS - I occasionally go "Off" in the mid to late evenings - so not perfect LOL

[arthur84 in reply to froggatt55]

This is a question,frogat55-What and when are your dosages of sintemet, azilect,amantadine? I got vertigo with azilect, afraid to take it. I use 4 mg neupro and about 5-25/100 sintemet + 1 tr sintemet, but never have any good days now, get weak, take a betablocker, you name it I have tremors, jelly legs, So depressing.have a lousy PD Dr., have changed 4 times.

Sorry having a pity-party today.

88 yr.old arthur84-female

[froggatt55 in reply to arthur84]

Hi Arthur84

I take 1MG Azilect in the morning round about 10.00 (although that can vary by +/- 1 hour depending on what I am doing that day - for example for my boxing training at 12,00, I take my tablets at 10.30 to ensure I am optimally medicated when I am in the gym) with two 25/100 Sinemet and with one 100MG Amantadine then two 25/100 Sinemet and one 100MG Amantadine 4 hours later then two 25/100 Sinemet 4 hours after that with 16MG Requip XL then two 25/100 Sinemet 4 hours later

I am at my best in the morning and pretty good in the afternoon but not at my best in the evening - so we see friend for lunches rather than dinners

Hope that is helpful

Kind regards

[DEAT in reply to froggatt55]

Hi froggatt55

Could you please share you exercise advice with me. I have heard a lot about exercise as a treatment and would value your advice.

Many thanks.

[froggatt55 in reply to DEAT]

if you send me your Email address, I will send you my Paper on Realistic Improvement in Parkinson's through Exercise (R.I.P.E.)

I will also send you my experience of Boxing Training

Kind regards

Froggatt

[paddyfields]

Hi Froggat, How about a PWP's for exercise movement? Its also the bee in my bonnet along with rehab/physio on the assumption that once on meds. you can, within limits, reverse the insidious effects this disease has had prior to dx. no matter how fit you seem to be. Once dx.at 69, I did it for myself The two occasions I have been to the NHS PD physio my impression has been that they like to shut the stable door after the horse is bolted. I know they have to concentrate on people who are struggling but we really must have a more pro-active approach. Its like the 3 month delay in my area in letters from the specialist to the GP, it just seems to be accepted

[froggatt55]

Absolutely paddyfields - we've got to take control off our own lives. I have written a paper called R.I.P.E. Realistic Improvement in Parkinson's through Exercise and a further paper on my Boxing Training experiences

You can get a copy free if you Email me at [e-mail]

My next step is to either set up a Facebook page or a blog but I'm struggling technically - any ideas?

[racerCP in reply to froggatt55]

What medications are you taking? Recently diagnosed, 6 mos ago, at age 73, still active and exercising but haven't started meds because symptoms not interfering yet. Do you think MAO-B inhibitor type drugs would be neuro protective along with exercise program?

[michaela13 in reply to racerCP]

Only sinemet but I can't walk well at night and off times. Swallowing is the worst, but not during off periods. It's after I take the sinemet. It's so crazy!

[michaela13 in reply to racerCP]

Only sinemet but I can't walk well at night and off times. Swallowing is the worst, but not during off periods. It's after I take the sinemet. It's so crazy!

[froggatt55 in reply to racerCP]

Hi racerCP

I am not a medical person but I am a veteran PwP. I believe that Azilect acts as a Neuro protective - as do many other PwPs. You may not get too many Neurologists agreeing however

I also believe - as do many other PwPs - that Amantadine halts the onset of Dyskinesia and there was a trial earlier this year that proved that it was effective. I also take Sinemet and Requip

I KNOW that Exercise is effective for me - the more intense the better. I started boxing training 5 months ago and am doing well. If you contact me on [e-mail] I can send you a copy of my paper on R.I.P.E. Realistic Improvement in Parkinson's through Exercise and also of my Boxing Training experiences

Kind regards

Bob

[froggatt55 in reply to racerCP]

You should talk to John Pepper who would say absolutely Yes. By the time caught up with John, I was already down the medication path so could not follow his regime

I believe that Azilect has neuro-protective properties

God luck and kind regards

[Goof55y]

I have been taking Azilect for about a year now , find my combination is working well.Tryed sinimet twice , don't know why but disliked it. I am 62 & have had pd for 13 , gave up work but do a lot of charity work, drive, sing in a choir (good for the vocal cords) but i do rest now when very tired. keeping busy , takes your mind off things . My worst time of the day is between 9 -11 am.

6am stalevo 125 and mirapexin 3.15 slow release

9am stalevo a disposable madipar as a booster between 9 - 10 i take at the most 3 madipar a day as a booster ,they are great

1 and 5 pm & 9pm stalevo

10pm azilec slow release

I don't have a tremor anymore dyskinesea has settled down , I found splitting the two slow release up made a big difference. Lifes not perfect but is ticking over nicely

[lempa_nik]

I was dx'd with PD in September 2013. Am in an early stage, with tremors in my left hand. Taking Sinemet and Azilect, 1X/day each. So far so good, but I cannot tell if the so-pricey Azilect is doing any good. (If it weren't for insurance, I couldn't afford the pricetag of $700/month.)

My neuro believes it is neuroprotective and will slow down the progression. He told me that according to one clinical trial, they found 400mg/day of levodopa (Sinemet?) was the critical level above which patients tended eventually to develop dyskinesias. It's curious that in view of this, he originally prescribed me, in addition to 1 Azilect, 6 Sinemets per day, or the equivalent of 600 mg of levodopa/day. In the beginning, I was taking 2 Sinemets/day, but have recently backed off to (1-1.5)/day since I distrust it, and can tolerate a little tremoring in the hand.

[michaela13]

Yes you need to back off the sinemet.

[beang]

I tried Azilect (without Sinemet) and was worse. I have benefitted from high intensity boxing workouts with rocksteadyboxing.org for over seven years. The program changes lives.