Rytary

Just got back from seeing my PD doctor. I know there is some discussion to the time released 4 or 8 hours. The manufactures released Rytary as an 8 hour medication but in the real world it seems its time span is closer to 4 to 4.5 hours. The manufacturer is aware of the results now that they are getting tons of feedback.

[Bailey_Texas]

I took it 1 month after it was on the market and i took it every 4 hours.

[glenandgerry in reply to Bailey_Texas]

Did you stop taking it Bailey_Texas if so, what was the reason?

[Bailey_Texas in reply to glenandgerry]

yes i did stop taking it. It stopped working. At the 3 hour mark i would feel a cold sweat come up my back and i would crash hardly able to move and i had a bad reaction and spent the night in the er. I woke up talking to myself and could not stop and it was incoherent. I could speak but it was also incoherent. I could read anything out loud just great but if i wanted to say something i thought of i could not do it. So 12 hours in the er and $5000 of my money they said bye and to this day i do not know want happen. I thought it was a stroke but there was no sign of one.

It was great when it worked i had no symptoms while taking it even woke up feeling great.

Nay try it again because it did work so good.

By the way it cost $900 a month with out insurance.

[glenandgerry in reply to Bailey_Texas]

Thanks for this Bailey_Texas Were you taking Azilect (Selegeline) at the same time? I understand these two drugs shouldn't be taken together. We are in the UK so not sure if anyone here is taking Rytary (known in Europe as Numient) as not sure if the cost has been approved for use on the NHS.

[Bailey_Texas in reply to glenandgerry]

yes i was

have not heard that do you have a web site that says that

[glenandgerry in reply to Bailey_Texas]

Can't remember where I saw that info but here are a couple of sites showing the contra indications drugs.com/drug-interactions... parkinsons.org.uk/forum/thr... pdr.net/drug-summary/Rytary... (Btw I think Azilect is also known as Rasagiline, not Selegiline as I mentioned in my previous post!)

[annmariebaird]

I have been taking Rytary for seven months. About 6 weeks ago, I stopped taking it ( was taking Rytary 2 capsules 4 times a day, plus I had to supplement with Sinemet 6 times a day) to see if that was what was causing me to feel completely exhausted every day at the same time. It was. I restarted the Rytary and now take 2 capsules 3 days each day supplemented with 4 Sinemet throughout the day, and I am doing great! This is such a new drug that no one (including the drug company) really knows how much you should take. Everyone is different.

[Donzim in reply to annmariebaird]

amen! our experience was similar. we started on a good regime which wore out a little but instead of stopping the drug or adding comtan, the doc changed the dosage and we were back on schedule.

[annmariebaird in reply to Donzim]

You have to be proactive or have an advocate who is. This is your body and your life - folks need to be strong! Thanks for your reply!!

[Hidden]

I am not sure why my avitar will not show up. May be the sight thought I was a little to scary. Have your Doctor talk to the Rytary Rep. and see if you can negotiate a lower price. Also look to some Parkinson's groups and see if they can help. M J Fox etc. Nobody should go without because of price.

[Donzim]

just like any other med, Rytary has an expected time of action based on standardized testing. Not everyone reacts the same way. We all know that. The point is that the directions for dosing are very specific to Rytary and it is not recommended that it be used just as a substitute for other c/l drugs and dosed the same way. A lot of docs do not know this. For, example, if one has afib, as my husband did, the recommendation is that the med be started in the cardiac care department under scrutiny. as it happened, our cardiologist thought a monitor was sufficient given don's afib history and we did it.

to start off taking a drug every four hours which is recommended for every eight hours might well take one to the ER. my point was that with regard to this particular med, the directions are NOT interchangeable with other, older c/l meds and that a lot of docs don't know that and therefore, mis-dose. read the entire directions that come with the drug. talk to the manufacturer.

we were one of the successful ones where the 8 hour schedule worked. nevertheless, we eventually had an hour gap in the plan and because we didn't want to go back on Comtan to extend it, the doc changed the dose and we were able to maintain every 8 hours. to this day, because one of don's pre-dose symtoms is nausea, we still have to battle that and we do so now with a small dose (25/100) in the late afternoon.

We had used regular c/l, c/l ER and had to use Comtan previously.

There is no magic. We were very fortunate to have a doctor who understood how to use Rytary and Don was and is very responsive to it.