Rytary successes??

[etterus]

Recently I was talking to another PWP about his success with Rytary. He like myself is non-tremor bradykinetic.

Are ther others out there who have had success with Rytary?

[Cbauer]

I have been taking Rytary for a few months now, ever since it became available here in the US. I have been making adjustments these first months and am now taking 5 of the smaller capsules every 4 hours. This is down from the carbidopa/levodopa 2 pills evert 2 hours. This may not sound so great to those of you who are early on in the disease. But it is the reality of more advanced Parkinsons . It is so nice to be able to sleep for four hours at a time. I had gone a long time with no REM sleep, not a good thing. Personally, I consider this drug to be a Godsend. It is quite expensive, but the Impax company has a good patient assistance program. If you spend 3% of your income on medications of any type, they will supply the medication for free. If you take other meds, I suggest that you stock up on those at the beginning of the year . It is amazing how

Oh, I forgot to mention that I had previously tried the extended release carbidopa/levodopa with poor results. I understand that many people get little or no extension of time with this product, and some have problems with uneven release of,the medication, sometimes resulting,an overdose situation which can be a real problem. But if it does work,for,you, it is quite a bit cheaper.

I hope,this is,of some help. I look forward to hearing how this goes for you.

Corinne

[etterus in reply to Cbauer]

Thanks for the info. Are you tremor dominate?

[Cbauer in reply to etterus]

I am not sure what tremor dominate means. Tremor is one of a dozen or more symptoms. I do not tremor to the extent that I can do nothing. I just cannot do anything well. I do not freeze, stare, or shuffle my feet which seems to be common with non-tremoring folks.

Best wishes.

[etterus in reply to Cbauer]

There are 2 different general types of PD. One is the most common which presents with tremors. The other is referred to as PIGD... postural instability, gait disorder. It usually starts with bradykinesia-slowness. I have the latter. All of us are different and have a variety of symptoms.

[Joycealice in reply to etterus]

So nice to hear someone else is in my category! I had PD for 15 yr before I found research differeanting between temor & non-temor people.

[Hidden]

I was on Rytary for about 4 months. It worked great it made me feel like i ruled the world. Had no symptoms when i was taking it. Slept well and woke up on the top of the world. Then with out warning i would crash at 3 hours in my 4 hour cycle of meds. I am talking about a total melt down frozen, depressed . This would last for about 2 hours before i was back to normal. Then one night i woke up and could not speak only incoherent mumbling. If i read some thing out loud i spoke normal butt if i was trying to say some thing that i was thinking i could not do it. After a visit to the er and 12 hours in the hospital with every test they could think of and exams by 4 doctors they said don't know what's wrong. No stroke nothing wrong. Turn's out just a side effect of Rytary.

All got for that visit was a $7,000.00 bill. That i am still paying on.

Took me off Rytary went back to C/L 25/100 and am doing good.

No regrets though was a great ride while it lasted.

[etterus in reply to Hidden]

Bummer. Not too reassuring!

[Hidden in reply to etterus]

It was a fluke with me i just was relating my experience It will not be the same for ever one i will try it again in a year or so because it does work so well.

It is worth the risk.

[Hidden]

I have been on Rytary for 2 months now, and I like it much better than the LDCD ER.

It has more on time, longer on time, less tardive dyskiniseas, but I do have to take it with a ginger cracker or I get nauseaus for about 10 minutes, but anything can make me sick to my stomach, Im just that way.

My doc at UCSF gave me a coupon for free bees

Hope it works well for you,

Suzie

[Hidden]

My husband use to freeze about 1/2 hr. before his next dosage on his old carbo/levo

meds. With Rytary ER he does not have this problem all day and can walk o.k. until about 8:00 p.m. when he slows down. His aide calls it "sundowning."