Rytary in Canada?

[LauraYu]

I went to see my neurologist today to discuss the possibility of switching from sinemet to Rytary, as well as from Amentadine to Gocovri. Sadly I’ve been told that neither Rytary nor Gocovri are available in Canada, since they have not been approved by Health Canada. I was really shocked when I heard this. Rotary was approved by US FDA in 2015, but it still hasn’t been approved by Canada after 7 years? This is unbelievable. What is going on?

I googled it online, apparently Rytary could last 4-6 hours, and because it can keep the levodopa level relatively stable, it may improve dyskinesia. This can greatly improve quality of life for many Canadians suffering from PD. Does anyone know anything about why Rytary isn’t available yet in Canada? Your kind responses are greatly appreciated!

Laura

[Shelly9999]

I tried Rytary and found it difficult to use. It comes in 4 different drug strength combinations and you have to decide 1- which level is the most effective and 2-how many pills you need during the day. Also the pill is quite expensive.

[LauraYu in reply to Shelly9999]

Thank you for letting me know. I am thinking of the possibility of ordering it online from the US. Yes, Rytary is quite expensive, around $400 per 90 pills. If it really works as advertised, can last 4-6 hours, I’m willing to invest my fortune into it LOL My current Sinemet only works for about 1.5 hours, I can’t go anywhere 😞I am getting desperate here

[LAJ12345 in reply to LauraYu]

What about the long acting madopar? Didn’t work for us because it was too strong still but might work for you?

[LauraYu in reply to LAJ12345]

Thank you. If I can’t find Rytary, then the long acting madopar will be my next choice. Interesting that my neurologist didn’t mention it yesterday. I am currently house bound because Sinemet only works for 1.5 hours now, and I am getting desperate. Thank you for the information.

[LAJ12345 in reply to LauraYu]

I think it is more expensive than the fast acting one so they always push that first. I think it would have worked for us if it was half the strength as the first few days were fine but as the levels in the blood reached equilibrium with all the tails overlapping from each dose it became way too strong. So if you have to buy any of these things choose a short dose first before committing to a lot of it.

[LauraYu in reply to LAJ12345]

Got it. Did you try smaller dosage to see how it goes? Is open capsule possible? Prayers for PD cure, poor us struggle every minute

[LauraYu in reply to LAJ12345]

Or maybe reduce one time for the day? Say from 3 times a day to 2 times?

[LAJ12345 in reply to LauraYu]

No we tried all that except the capsule opening as that is not allowed with these. Problem is for my husband he seemed to get a big spike after 90 minutes which made him completely rigid all over and then it wore off quicker than it should so he was shaking if he didn’t take the next one after 4 hours. It made him suicidal after about 5 days of it.

Maybe you need a higher dose and will be fine but it does take a good 5-7 days to kick in fully so don’t buy a lot until you have had a couple of weeks on it as by then you should have reached a steady state.

We are now back to blue madopar 62.5 capsules every 4 hours 7,11,3,with 1/4 a rapid tablet at the 2 hour mark and another 1/2 at about 9 pm. It seems to be working better to even things out. He is also taking a dopa mucuna from NOW with the capsules.

It certainly is heartbreaking as a wife and caregiver to watch as we feel helpfulness to make it stop 😢

[LauraYu in reply to LAJ12345]

I totally feel the pain for you ,Sending hugs to you! PD is such a torturous disease, without drugs, not a single minute is comfortable. Honestly I rather like getting something else than PD. I really respect your love and dedication to your husband, being a caregivers for PD is not easy. I am 55 years now and got PD for 10 years. My husband is stuck with me, can’t go anywhere, not even a vacation that he’s well deserved. Heartbroken and helpless!

I tried many many supplements, basically no success story there, vitamin D, vitamin E,B……….you name it. Sinemet works and Amantadine works for me, but is causing ankle swollen, so I have to cut the dosage in half and just hang in here. My neurologist suggested DBS, I will not go until the last minute, before I exhaust all the drug options. My dear, just hang in there. I somehow feel they will find the solution in our generation, I believe it’s likely a surgical solution, not a drug. Prayers prayers prayers!!!!!!

[LAJ12345 in reply to LauraYu]

Yes, we’re trying them too❤️

[Astra7 in reply to LauraYu]

Have you tried melatonin and / or CBD oil? Also I’m sure you’ve tried this, but taking your meds with a big glass of water - 400ml - might stretch it a bit.

[LauraYu in reply to Astra7]

Hi Astra, no I have not tried these two. I bought some CBD drink and cookies, but I was too scared to try 🤭they are still sitting in my fridge. I am worried about once I am on the CBD, probably will never able to travel abroad. I will try your suggestion of the bigger glass of water, never thought of this, I am a person doesn’t drink lot of water. This might be it. Thank you for the advice!!!

[Smittybear7 in reply to LauraYu]

What dose of Sinemet are you on and how often do you take it?

[Pegcity]

I was told that the company that makes Rytary isn't interested in coming to Canada because the market is too small. On the other hand, domperidone is approved in Canada.

[LauraYu in reply to Pegcity]

That’s so sad ……I am going to search Health Canada’s website, see if we can raise some voice about Tytary

[Hikoi in reply to LauraYu]

You are not so hard done by, I think the USA is the only country in the world that has approved Rytary. Certainly not available in Oceania and I don't think its approved or used in UK or Europe . It is just long and short acting Sinemet in one pill as far as I am aware. Comes in differing strengths.Madopar and Sinemet are virtually the same, different manufacturers. Do you take azilect (Rasageline) to help lengthen your on time? And or entacopone? It is very hard when off times are so frequent.

[JAS9 in reply to Hikoi]

Quoting from Medscape 2015

"The European Committee for Medicinal Products for Human Use (CHMP) has recommended granting marketing authorization for IPX066 (Numient, Impax Laboratories), a modified-release oral capsule formulation of levodopa-carbidopa, for the treatment of Parkinson's disease (PD).

The indication is for the symptomatic treatment of adult patients with PD, a statement from the European Medicines Agency (EMA) released today notes. This formulation was approved by the US Food and Drug Administration in January of this year (2015) under the brand name Rytary."

[Hikoi in reply to JAS9]

An update: Numient (i believe it is Rytary) is now withdrawn from the EU. I dont know why. All rytary posters here seem to be from the US.

ema.europa.eu/en/medicines/...

[LauraYu in reply to Hikoi]

I got reply from Parkinson’s Canada, Rytary manufacture has no intention come to Canada…….. don’t know why. I also wrote to Health Canada, let’s see what they say. I will share.

I have tried Mirapex, selegiline, azilect, they all have pretty bad side effects for me. Sinemet works perfectly, just doesn’t last long

[Hikoi in reply to LauraYu]

Sadly I don't know that Sinemet lasts for anyone who is 9 years into the disease. Even Rytary can be given 3-5xs a day from what I have read.

[LauraYu in reply to Hikoi]

I’ve read Rytary can last 4-5 hours. If possible I am planning to find a neurologist in the US, get prescription and Rytary. I’m really desperate to give it a try

[Sue171]

I'm in Ontario Canada and I actually contacted the manufacturer of Rytary directly....go big or go home, I always say! This was about 6-8 months ago, and they basically told me that they had no plans to apply for approval to market it Rytary in Canada. I pushed for a reason, and they implied that the market isn't big enough up here. I said great, I'll tell that to the 100,000 people up here that need more viable options. I'd love to take it further, but what can one person do against a massive US drug company?

[LauraYu in reply to Sue171]

thank you Sue for your reply! I contacted Health Canada, and they basically gave me a similar answer, that Rytary has never applied to enter Canada. However they mentioned a special program called SAP(special access program), if our neurologist recommends, proving that there are special needs, the government actually can reach out to the manufacturer to get the drug for us. I have appointment with my neurologist next week, I will mention the SAP program to see if I am qualified……… I am in Richmond Hill

[Sue171 in reply to LauraYu]

I actually live in northern Ontario, but just moved up here from Toronto a few years ago. I was in Toronto for 30 years! I’m lucky enough to still have access to my movement disorder specialist @ bAYCREST! I’d love to talk more with you… My Toronto neurologist actually has a license to practice in Texas, so maybe she could write you the prescription that you’re looking for if your own neurologist won’t/can’t. I actually had a duodopa pump put in this past July, but it’s not working out as well as I’d hoped either so I’m really into trying out Rytary!! if you’d like to speak more, let me know we’ll figure out a way to get in touch!

[LauraYu in reply to Sue171]

I will PM you, let’s team up to find a solution for ourselves!

[Sue171 in reply to LauraYu]

canada.ca/en/health-canada/...

[LauraYu in reply to Sue171]

I have sent you a private message, did you get it? Please let me know!

[Tosca60 in reply to LauraYu]

Hey, Laura. Did you have any luck with getting Rytary through SAP? My friend with parkinson's needs to crush her Sinemet IR which which causes her to absorb it too quickly, hitting peak levels that sometimes causing dyskinesia and then wearing off in about 45 minutes. I read that the Rytary capsule can be open and the beads added to applesauce, as long as the beads themselves are not crushed. Sounds like a good option for those who can't swallow pills and need a longer-acting medication.

[laglag]

I've heard negative and positive things about Rytary. What kind of positive things have you heard? I'm from the US, not Canada. Thanks! 🥊

[LauraYu]

I also heard both positive and negative feedback about Rytary. On the positive side, it last much longer than the immediate version, typically 5 hours plus. Also it helps the dyskinesia because it smooth out the fluctuations. The negative is hard to manage the dosage, finding the right dosage is a challenge

[laglag]

Thanks! Probably makes a difference on what you have to eat and how much you exercise etc etc....

My doctor wanted me to go on it and I thought I'd have to think about it the first so much negative. I guess I should try it?

[LauraYu in reply to laglag]

I would say it depends on if your body allows you to try. Change of medication involves risk, side effects, dyskinesia because of improper dosage etc. if your health is in relatively stable condition, and the only issue is that Sinemet doesn’t last long, I would say why not give it a shot. If it works, then it’s perfect. If not, simply stop it and switch back.