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stump

Rytary update

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stump    452

Rytary has mostly eliminated the mid-afternoon sleepiness I was having on IR C/L.  But the tremor and slowness in my left hand are definitely worse than on the IR C/L.  Not sure if the dose needs tweaking, or if I need to add a little bit of IR back in, or what.  But even at the level of issues with tremors I'll take that over the sleepiness with just IR, or the tremors with no medication at all.

 

I will say that I've had fewer issues with nausea since the switch.  Didn't have big problems previously, but the first dose in the morning would sometimes give me a grumbly tummy until I ate something.  Or if I was doing a lot of physical work and not eating much the afternoon dose would sometimes cause issues.  Thus far I'd say that's even dropped by 75+% with the switch to Rytary.  Though, if I'm under-medicated at the moment that could also be part of the side effect improvements.

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swamper    59

I need to chime in on Rytary, methinks. I am on the 245 preparation, one capsule four times a day, and have recently added in 1/2 sinemet in the morning to get me going. I have had the onset of dyskinesia, which involves chewing the inside of my mouth and clenching of my jaw muscles, which started about three m0nths ago. I am in year 4 of diagnosis, and have had the mouth chewing for longer--probably since starting sinemet four years ago. But the clenching of my jaw muscles and neck muscles is new, and I think it is dyskinesia. I figured it is simply progression of the disease coupled with the use of C/L over four years, but I would be interested to hear of others who have this strange sensation. (I am a lot older than you all, so i would not see this as something for you to worry about!)

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stump    452

Called Impax this morning to check on the application for patient assistance.  They said I was approved!  I'll be all set to stick with Rytary until about this time next year at a minimum.  I figure I came in just under the income threshold for a household of 6 people.  Which is good because it seems like Rytary is working a lot better for me than the regular IR 25/100, but there's no possibility of affording $630/mo (at least, maybe more) to pay for it out of pocket.  I will try to see if they can get my insurance to cover it by next year.  I have no issue with paying the co-pay (IIRC $30 for a 3 month supply for name brand drugs).  Heck, I'd be OK with $30/month for it.  

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Cece    42

CONGRATULATIONS STUMP!!!! This is the best news I have heard in a long time. Good to hear the med is working for you too. Take advantage of the program. Your dererve and earned it. I hope you will qualify next Year and thereafter. I just hope the Gi dr determines why my meds are not working, possible gastroparesis. The MDS gave me material about the Duopa pump. I have been following.Beau's mom - Diane's posts about her pump ever since she got it. I think she is a much stronger person than I am. I admire her strength and perseverance.

 

I feel like my PD has been on the fast track ever since I have been diagnosed. I am happy for anyone on the forum that has good news to post. Maybe I will have good news after the GI dr determines my problem so i can get better and Rytary helps my tremors, stiffness and dystonia. After my stomach gets betterr. I will go back to Physical Medicine And Rehab Dr about the neuropathy in my hands and feet. He recommended a TENS.Unit.

Edited by CECE
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Pathfinder    65

CONGRATULATIONS STUMP!!!! This is the best news I have heard in a long time. Good to hear the med is working for you too. Take advantage of the program. Your dererve and earned it. I hope you will qualify next Year and thereafter. I just hope the Gi dr determines why my meds are not working, possible gastroparesis. The MDS gave me material about the Duopa pump. I have been following.Beau's mom - Diane's posts about her pump ever since she got it. I think she is a much stronger person than I am. I admire her strength and perseverance.

I feel like my PD has been on the fast track ever since I have been diagnosed. I am happy for anyone on the forum that has good news to post. Maybe I will have good news after the GI dr determines my problem so i can get better and Rytary helps my tremors, stiffness and dystonia. After my stomach gets betterr. I will go back to Physical Medicine And Rehab Dr about the neuropathy in my hands and feet. He recommended a TENS.Unit.

My husband has Gasteoparesis as well as Parkinsonism. He takes C/L four times a day on an empty stomach. He has to follow strict dosing times or it interferes with absorption.

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Cece    42

Thanks for the info. I hope your DH is not in pain and doing ok. Before Rytary, i took C/L 250 mg every 3 hrs 5 times a day. I didn't eat 1 hr before or after med. With Rytary I eat 1 1/2 hrs before and after med. I hardly eat protein. The MDS Sent me an email said I was anemic and to add B12 pill and she will retest me in April. if you don't mind my asking, does your DH adhere to a specific diet or tak any meds for it? I am taking taking omeprazole ,ranitidine, Carafate and Ondansetron for stomach and Amitiza for constipation. I think some,of my stomach pain is caused by the number of Rytary pills I have to take. OnC/L, I took 5 pills a day and on Rytary I take 12 pills. After I started Rytary 11/17/16, a couple weeks later I had to start taking omeprazole. On 12/16/16, during my appt with the MDS,Iold her about my stomach pain. and they made me an appt with a gastro dr for 4/19/17. I kept calling the gsstro office and my appt. was changed to 3/2/17. I was on a cancellarion list from day one. I started throwing up 1/26/17 and could not eat. I called my PCP and the office made me an appt with another gsstro, dr 2/16/17. I went to my PCP on 2/2/17 and I was sent to ER.and all they did was give me more stomxach med. On 2/4/17 I wenr to ER because I was in pain from stomxh to mouth and could not swallow. They numbed my throat with lidocaine. On 2/11/17 I went to ER with abdominal pain and they said I did not have a blockage, and I needed to wait and see gastro dr on 2/16/17 for further treatment. So now I am waiting to have an EGD and a gastric emptying test. I hope the dr can help me. I m so tired of ll the meds.

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Pathfinder    65

Thanks for the info. I hope your DH is not in pain and doing ok. Before Rytary, i took C/L 250 mg every 3 hrs 5 times a day. I didn't eat 1 hr before or after med. With Rytary I eat 1 1/2 hrs before and after med. I hardly eat protein. The MDS Sent me an email said I was anemic and to add B12 pill and she will retest me in April. if you don't mind my asking, does your DH adhere to a specific diet or tak any meds for it? I am taking taking omeprazole ,ranitidine, Carafate and Ondansetron for stomach and Amitiza for constipation. I think some,of my stomach pain is caused by the number of Rytary pills I have to take. OnC/L, I took 5 pills a day and on Rytary I take 12 pills. After I started Rytary 11/17/16, a couple weeks later I had to start taking omeprazole. On 12/16/16, during my appt with the MDS,Iold her about my stomach pain. and they made me an appt with a gastro dr for 4/19/17. I kept calling the gsstro office and my appt. was changed to 3/2/17. I was on a cancellarion list from day one. I started throwing up 1/26/17 and could not eat. I called my PCP and the office made me an appt with another gsstro, dr 2/16/17. I went to my PCP on 2/2/17 and I was sent to ER.and all they did was give me more stomxach med. On 2/4/17 I wenr to ER because I was in pain from stomxh to mouth and could not swallow. They numbed my throat with lidocaine. On 2/11/17 I went to ER with abdominal pain and they said I did not have a blockage, and I needed to wait and see gastro dr on 2/16/17 for further treatment. So now I am waiting to have an EGD and a gastric emptying test. I hope the dr can help me. I m so tired of ll the meds.

Hubby has no specific diet, he is a diabetic, we are very careful to avoid spicy foods, acidic foods and no alcohol. He was hospitalized for four days with Gasteoparesis, the pain was unbearable. The Gasteoparesis is the worst ailment he has, it affects his quality of life in so many ways. He takes Raglan, Zantac, Bentyl, and Omeprazole. Lately he has been vomiting a lot. If this continues they may inject Botox into the stomach to try and calm that down. For Gasteoparesis pain he takes two Tramadol, only when the pain reaches level six on a one thru ten level. Smaller and more frequent meals regiment do nothing for him, really even the multiple Meds don't do very much. Sorry to be a Debbie Downer, but l figured you wanted a real glimpse of the issue.

 

Hope your tests are easy for you. Good luck!

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Cece    42

Pathfinder

 

I just posted you a response and lost it!

 

Thank you for taking the time to provide me with useful information.I don't feel you are a Debbie Downer. I appreciate getting the facts.

I have much respect for you,and all other caregivers for all the dedication, care and love you give. I.hope your DH is feeling better each day and will not need the Botox shots. I take Zofran (generic Ondansetron) for nausea and vomiting. The Dr will not let me take Reglan(generic Metoclorpramide) as he said it has adverse affects my Parkinson's. I can't wait until it is i over because my MDS will not address/change my Rytary dosage until the GI dr makes his final diagnosis and plan of carr for my stomach. "Too much Rytary gives me dyskinesia and lessor dose causes tremors and dystonia

 

Thanks so much and please take care.

 

 

 

 

 

 

..

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