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Rasagiline and other drugs

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I am 54 yrs old (female) diagnosed a year ago. My symptoms continue to be very mild just some fine motor issues in my left hand/fingers which makes typing difficult, and sometimes an awkward gait, and of course stiffness in my upper body. So far no cognitive symptoms. I still work part time, and am active - bike 20 miles RT to work, lots of hiking, XC skiing in winter. And stretching/strengthening and some yoga. 

I am considering starting Rasagiline on recommendation of my neurologist. But the list of side effects is way worse than my symptoms! What are people's experiences with drugs? Which ones tend to be best for motor symptoms (gait.)

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I have been on the Rasagiline since 6months after I was diagnosed. It was the first drug I started with. I have had no side effects. Took about 3 weeks for me to notice it was working. Did not realize how much better I would feel with it.

I know others on here tried it and had some issues. Rasagiline as far as PD drugs is one of the ones with side effects that don't affect a lot of people but when it does they know it. The agonist drugs have a tendency to be more touchy. In my signature line you can see I stay away from the agonist class of drugs.

Hope this helps

Blessings

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I probably had the worst reaction to Azilect of anyone active here.  Started taking it shortly after I was diagnosed a couple years ago.  Within a few weeks I was experiencing short term memory problems, agitation, and then hallucinations.  Quit taking it once the hallucinations started.

 

That said, most people seem to tolerate it very well.  So I wouldn't avoid it necessarily because one person reported that reaction.  But I would keep a close eye on it for similar issues.

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I’ve been on Azilect since April 2014 and no other drug.  I am very active with exercise that is the main contributor  to my delayed symptoms. 

I’m also a huge believer in Azilect. It has delayed my taking other meds for close to 4 years. It’s my personal experience, we are all different.

D

Edited by Discovery

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I take selegilne which is similar to azalect - not sure of the difference but I'm doing well. I also take an agonist and I'm fine on that too. Everyone is different - keep exercising that's a gamechanget.

 

good luck

 

LAD

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I think that Azilect has slowed my progression of PD, but have no proof of that. I don't notice any side effects. Start with .5mgs for 4 weeks, then up it to the 1mg....you should be fine.

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One of the listed side effects is Very common (10% or more): Accidental injury, fall

This makes me nervous as I do a lot of biking and hiking. So does this drug make you more unstable or something?

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I take azilect (now generic)--no issues with balance, instability, or anything like that. And I do a fair amount of hiking.

There's some reasons to think azilect will slow progression--in my case, symptom relief from azilect is modest (at best).

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Hiker, I was able to apply to a place called the assistance fund. Because I have PD they covered all of my co-pay for Azilect (rasageline) except for $10. If I had not found them my copay for 90 day supply was $1000+ dollars. Now that I have the assistance fund I only pay $10. Talk to your neurologist. Mine put me in contact with a social worker who helped me find this program.

Good luck

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1 hour ago, hiker said:

Also will cost me $400 for 30 pills  - how do you make it affordable?

The other idea is to call Teva and/or whoever is making generic versions.  Often they'll have patient assistance programs to provide the meds at low or no cost to the patient based on income.  That's how I'm able to afford Rytary (made by Impax) which would otherwise be $700/month.

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I was nervous when first prescribed , as I too  try to be as active as possible . I read all the side effects and hesitated about a month and a half before taking it . I Hike , play hockey am in the woods with my dog , hunt , fish and have not had an issue .  I have been taking it since October of 2015 . 

Dan

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I'm about to start taking Azilect in about 5 days. Thanks all of you for the wide range of opinions about this med.  I got a 90 day supply for $0 through my health insurance plan, but - my $3000 deductible kicks in Jan 1. 

The non insurance cost for 90 day supply of Azilect is $2150. That presents a philosophical question: do I pay my mortgage or take PD meds. The other drug I'm now taking for pain management from spinal issues is called Horizant (gabapentin-Er). That drug is $1100 for a 3 month supply, but $50 With insurance.

This is becoming an expensive trip into PD land.  Can anyone show me the exit? Whew!

-S

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Before you need to refill your Azilect prescription next year try applying here. https://tafcares.org/  They covered all my $1100 out of pocket each time I refill. All I had to pay was a $10 copay. The coverage is good for one year then you can renew.

Hope this helps

Edited by adams234
  • Thanks 1

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When my dh started Azilect it kicked in very gradually. Initially there was no major change but over time he'd realize he was moving in a way he hadn't been able to for a long time. It took months to really kick in, but he has been very happy on it. He eventually needed to add cd/ld but he still takes rasagiline. 

His insurance won't cover it. Before I could get him on mine, there was a coupon from the manufacturer that made it affordable, but it expired a few months before the generic came out and we had to pay out of pocket. And the generic isn't a whole lot cheaper than the name brand. Thankfully he is now covered by my insurance. 

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Hi Adams234,

the link you provided above,do they assist people without health insurance coverage?The current health market place insurance premium is becoming unaffordable as it keeps going up,for people like me who buys insurance.

Edited by otolorin

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Yes they do both. I have a High deductible insurance plane through my employer. This means I pay for everything till I reach my deductible. The assistance fund pays for my Azilect/rasagiline tablets. The out of pocket cost for me is $1100 for a 90 day supply. What my pharmacy does is run the meds through my health insurance first, then runs it through assistance fund, once that is done I end up paying a $10 copay. The assistance fund works like a secondary insurance for medication copays they approve you for. I did not ask them to cover my other pills since I can afford those. I was approved instantly when I applied online. My house hold income is a little above average for middleclass in New York state.

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On 12/28/2017 at 2:31 PM, adams234 said:

What my pharmacy does is run the meds through my health insurance first, then runs it through assistance fund, once that is done I end up paying a $10 copay.

I also applied to the assistance fund. They asked for more documents about my 2017 expenses because my family income was just over the  borderline of their guidelines for providing financial assistance. Hopefully, I will hear back soon. I have to refill my Azilect prescription next month and I don't want to come up with $2100. Also, if this program works, it will help me to meet my $3,000 insurance deductible, thereby making all my other healthcare expenses be covered by insurance.

-S

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Good luck Superdecooper.

I have already hit my max deductible thanks to Azilect.

Now my insurance pays for things. Makes me feel better that they get to spend money on me.

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adams234,

you're still taking azilect, how come? I thought folks took that med for a while then moved on. Can you tell if it is working for you?  or are you afraid to stop taking it because it might make things worse?

 

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My dh takes both. The way I understand it is that Azilect helps keep dopamine from breaking down whereas levodopa helps the brain create dopamine. (Not sure what carbidopa's role is without googling, other than it supports/complements the levodopa somehow.)

Also, as a couple people noted above, there are some reasons to believe that Azilect might slow progression of the disease. DH's ND (who spends 75% of her time on PD research and 25% seeing PD patients) is a strong proponent of it. 

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Sorry for late reply Superdecooper, Been a crazy few weeks

I still take it because I feel I am benefitting from it. My doctor and I believe that is helping so we will stick with it till we are proven otherwise. Since I was able to get my copay for Azilect to $10 for a 3 month supply I felt no need to experiment with stopping it. One of those deals if the regiment is working don't mess with it. If my MDS suggested stopping (backed by a good reason) then I would give it a try.

My MDS had me start with Azilect since I was part of the Isradipine study. Her belief was that the 2 drugs combined might slow my progression. I have been in the study for just over 2.5 years and on both drugs the whole time. According to my updrs scores my progression has been slower than what they would expect for someone my age.

When I first started Azilect it was the only anti-Parkinson's med I was taking. I first notice that my mood was greatly improved. It was like someone lifted the cloud of dread that had been following me around. Then I noticed that some of my stiffness was decreased. This made it a lot easier to walk. I can remember walk over 5 miles the day I felt it working.

That is why I am still taking it.

Hope I didn't ramble on to long

Blessings

Adam

 

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