Rytary

[annmariebaird]

I am a 68 year old woman who was diagnosed in 2002 with Parkinsons. I have been very fortunate in that I do not have dyskinesia symptoms unless I over-med. My symptoms are mostly freezing issues. I have been on sinemet (carbidopa/levodopa) since 2002 and have had good success; however I recently went through what I thought was low blood sugar issues, so began looking for a solution. My neurologist prescribed Rytary (extended release carbidopa/levodopa) one week ago, and I can't tell you how wonderful it is to have my life back! I went from taking meds every 2 hours to every 5 hours. Because it is extended release, I sleep better with more fluid nighttime movement. I also bought John Pepper's book and am inspired what this gentlemen has asked of his body. I got back to hiking easy trails yesterday and am disciplining myself in other ways.. If you have questions about the Rytary, let me know. Above all - smile today!

[Hidden]

Annmariebaird,

That is wonderful! I am very happy to hear positive results. Can you tell me the strength and how many Levocarb you were taking every 2 hrs? Did you have 'wearing off'? What did you take at night? Do you have tremor or dystonia?

My apologies for all the questions. No two people with PD are exactly the same and even so I am hoping to find better symptom relief. Thank you! 😊

[annmariebaird in reply to Hidden]

Prior to 2015, I was taking one 25/100 sinemet 5 to 6 times a day. This year the sinemet just didn't seem to last as long, so I began taking one 25/100 sinemet every two hours. What we figured out was that I was not taking a strong enough dose, so the food I was eating interfered with the drug. I knew that protein would cause the interference, but apparently fat and all amino acid foods also interfere unless you taking a stronger dose. I didn't take sinemet after about 8 pm because I went to bed pretty early, but now with the Rytary, I have a much more peaceful sleep.

My parkinsons symptoms are more in the "freezing" type rather than movement (unless I overmed).

I hope this helps.

[Hidden in reply to annmariebaird]

Annmariebaird. Thank you for your very helpful reply. My symptoms are bradykenisia and foot dystonia. Lately I have to take LevoCarb more frequently as well. I will speak with my neuro regarding Rytary. With luck I may also be fortunate to get a good night's sleep! Thanks again.

[annmariebaird in reply to Hidden]

The crazy thing is that sometimes when I feel like I am heading into an "off" period, I eat a piece of bread - Daves Good Seed Bread is the only one that works - and then I am back in the "on" again.. something to do with the brain being stimulated by the taste buds or stomach acids or whatever... I have no explanation. Good luck! Keep me posted!!

[Hidden]

I too was impressed with rytary but in my 3rd month i would crash at about 3 hours into a med cycle take an hour to recover and crash again 3 hours later. What i mean by crashed is i would freeze, not able to walk, and fast breathing.

This just my experiance not typical. But while it worked i felt like a god.

Had to quit it and go back to standard carbidopa/levodopa and it works fine.

Hope you have better luck

[MarciAC4 in reply to Hidden]

How did you quit Rytary and get back on c/l

[annmariebaird in reply to MarciAC4]

I quit it cold turkey - I know that isn't what they tell you to do, but I was so frustrated. I would check with your pharmacist or neuro. Have you considered DBS surgery?

[MarciAC4]

I practically begged my neurologist to help me get off. Instead she added something else. I honestly don’t think that she knows how. I am considering DBS.

[annmariebaird in reply to MarciAC4]

When you are tired of chasing the meds, it is time to chase the solution. Not for everyone, but you have to seriously explore DBS. It has given me my life back!!!

[MarciAC4]

I also asked the pharmacist and she did not know either

[annmariebaird in reply to MarciAC4]

Gee why am I not surprised. My respect for most pharmacists is right up there with my respect for Big Pharmacy... And most but not all doctors. All you can do safely is to withdraw gradually. I had a similar experience today when I filled a prescription. When I asked a question about the drug the pharmacist read the literature and then looked at me with a confused demeanor and confessed that she really didn't know the answer to my question. It is very frustrating to say the least.

Annie