Is anyone using Rytary

Posted by tllaes @tllaes, Aug 17, 2018

My doctor is suggesting I switch from a combination of Sinemet 25/100 and 50/200 to Rytary 36.25 mg-145 mg oral capsule,extended release. I would take 3 cap(s) 3 times a day. He feels my on time will increase. Is anyone taking Rytary? It is very expensive and not covered in my Rx Formulary at this time. If you are taking has it been an improvement? I have Parkinson for almost 7 years.

Blood pressure hasn't been a problem. After seeing the Doctor he has me increasing my dosage by one more capsule every 8 hours. I will do it over a 3 week period. I started on Thanksgiving taking 4 at bedtime, then one week later 4 at 6:00am when I get up and this Thursday I will take 4 at 2:00 pm. So far so good and I can feel more energy during the day and no side effects.

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@tllaes

Blood pressure hasn't been a problem. After seeing the Doctor he has me increasing my dosage by one more capsule every 8 hours. I will do it over a 3 week period. I started on Thanksgiving taking 4 at bedtime, then one week later 4 at 6:00am when I get up and this Thursday I will take 4 at 2:00 pm. So far so good and I can feel more energy during the day and no side effects.

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That is great, @tllaes, feeling more energy and no side-effects is wonderful! I appreciate your checking in and letting me know of your progress.

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@dianalee

Yes, I am a Caregiver Partner for someone with PD…And with the financial assistance of the PAN Foundation I was able to get Rytary for him with no out of pocket $$$…He has gone from a frequency of Sinemet and Comtan every 2+ hrs, to Rytary every 4-5 hrs…for us, it has been a "win win."

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Who or where does one call or email for the connection with the PAN Foundation to get Rytary with no out of pocket $$$? It is very expensive; just paid $367. for 30 days for a regimen of 4 MG95 capsules (I'm in the doughnut hole right now, and will be paying $1,100. per 90-day period. Right now my neurologist is touting its benefits, buy so far (after 8 weeks, or so, on the drug) I am feeling so-so,only.

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@hjscheib

Who or where does one call or email for the connection with the PAN Foundation to get Rytary with no out of pocket $$$? It is very expensive; just paid $367. for 30 days for a regimen of 4 MG95 capsules (I'm in the doughnut hole right now, and will be paying $1,100. per 90-day period. Right now my neurologist is touting its benefits, buy so far (after 8 weeks, or so, on the drug) I am feeling so-so,only.

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Hello @hjscheib and welcome to Mayo Clinic Connect's Parkinson's discussion group. You asked how to contact the PAN Foundation for help with medication costs. Here is their website, https://www.panfoundation.org/.

If you are comfortable sharing more: how long ago were you diagnosed with PD? Have you tried other meds before Rytary? What is the most difficult symptom you are now experiencing?

I understand that Rytary is quite expensive. You mentioned that after 8 weeks on Rytary you are just feeling "so-so." Did your doctor mention how long you needed to use it before you would be aware of any improvement?

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@hopeful33250

Hello @hjscheib and welcome to Mayo Clinic Connect's Parkinson's discussion group. You asked how to contact the PAN Foundation for help with medication costs. Here is their website, https://www.panfoundation.org/.

If you are comfortable sharing more: how long ago were you diagnosed with PD? Have you tried other meds before Rytary? What is the most difficult symptom you are now experiencing?

I understand that Rytary is quite expensive. You mentioned that after 8 weeks on Rytary you are just feeling "so-so." Did your doctor mention how long you needed to use it before you would be aware of any improvement?

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Thanks for the Pan Foundation website. I will get in touch with them to find out if I can find some cost support for Rydary. I posted my costs in the previous response. I've been a PD patient now for exactly 6 years on August 15th. I have been taking carbidopa/levodopa, 25-100 mg tabs, 2 per dose, 3 times per day, coupled with Azilect (rasagilene,
mg, for "blocking" the development of the disease and reducing the PD symptoms; and venlafaxine, 225 mg, dose per .day

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@hjscheib

Thanks for the Pan Foundation website. I will get in touch with them to find out if I can find some cost support for Rydary. I posted my costs in the previous response. I've been a PD patient now for exactly 6 years on August 15th. I have been taking carbidopa/levodopa, 25-100 mg tabs, 2 per dose, 3 times per day, coupled with Azilect (rasagilene,
mg, for "blocking" the development of the disease and reducing the PD symptoms; and venlafaxine, 225 mg, dose per .day

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Worst symptom is in the non-movement area – the nervousness & anxiety I almost consistently get (now) after the mid-day dose of 4 Rytary capsules. I can't determine if the anxiety/nervousness is a result of the diminishing effects of the venlafaxine or with too much of the Rydary building up.

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@hjscheib

Worst symptom is in the non-movement area – the nervousness & anxiety I almost consistently get (now) after the mid-day dose of 4 Rytary capsules. I can't determine if the anxiety/nervousness is a result of the diminishing effects of the venlafaxine or with too much of the Rydary building up.

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I understand what you are saying, @hjscheib. Has the increased anxiety and nervousness become worse since taking the Rytary?
If you think there is some correlation between the use of the Rytary and the increased anxiety, you might consider calling your doctor's office and seeing if you could decrease the Rytary a little.

Are you still taking the carbidopa/levodopa?

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@hopeful33250

I understand what you are saying, @hjscheib. Has the increased anxiety and nervousness become worse since taking the Rytary?
If you think there is some correlation between the use of the Rytary and the increased anxiety, you might consider calling your doctor's office and seeing if you could decrease the Rytary a little.

Are you still taking the carbidopa/levodopa?

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No longer taking carbidopa/levodopa. The Rytary is time-released carbidopa/levodopa. With the Rytary 3 X per day (4 capsules) my has just responded to the need for down time dopamine. But I am still getting the anxiety and nervousness. Will seek ouit a new med to replace venlafaxene, if there is some med I could take where there were no major negative results. Will be speaking with my psychiatrist in search of something to replace venlafaxene. (Does anyone know of a useful anti-anxiety drug or mood stabilizer that would help reduce the anxiety and nervousness that might be created by a PD drug – like Rytary – which is suppposed to reduce off-time PD symptoms, w/o adding to them?

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@hjscheib

No longer taking carbidopa/levodopa. The Rytary is time-released carbidopa/levodopa. With the Rytary 3 X per day (4 capsules) my has just responded to the need for down time dopamine. But I am still getting the anxiety and nervousness. Will seek ouit a new med to replace venlafaxene, if there is some med I could take where there were no major negative results. Will be speaking with my psychiatrist in search of something to replace venlafaxene. (Does anyone know of a useful anti-anxiety drug or mood stabilizer that would help reduce the anxiety and nervousness that might be created by a PD drug – like Rytary – which is suppposed to reduce off-time PD symptoms, w/o adding to them?

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@hjscheib

I'm not sure about how different meds will react with Rytary. I've never taken Rytary. I did take Venlafaxene for a couple of years and it did not work well for me. However, I was taking a much smaller dose than you.

I switched several years ago to Cymbalta and feel much better. Cymbalta is good for sleeping as well as for pain. Talk with your doctor and see what he/she feels would be a good substitute for Venlafaxene.

If your doctor approves a change in meds, will you let me know how you are feeling?

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@hopeful33250

That is an interesting question for your doctor, @tllaes. I would be interested in the answer as well. I'm not a medical professional but just wondering if Rytary lowers blood pressure as other PD medicines do. If that it the case, then the lower energy might be from the lowered BP after the second dose? It might be worth asking about.

I'm wondering if @dianalee has an opinion about that?

If you are comfortable doing so, @tllaes, I would like to hear what your doctor has to say about the lowered energy.

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My doctor and I are trying to arrive at a good, productive daily dose of Rytary. We started from carbadopa/levodopa 3 doses per day, 2 pills perdose (25/100 mg. Took with Azilect (1 pill; 5 mg, per day. Am in the middle of a switch to Rydary and have been taking various doses for the past 8-10 weeks; 95 mg, capsules. I am getting tired after the 2nd dose and sometimes the 3rd, also. The tired feeling seems most connected with my thighs; no pain just tired, "washed out" feeling (with slow walk). I have briefly talked with my neurologist and we have shorted the time between doses by 1/2 hour. Can't yet determine if that is helping me. Might be cutting down on the tired legs feeling and the anxiety I feel, sometimes at the same time. Constantly chatting with my neurologist about this interrelated grouping of adverse effects – including irritability.Somehow we missed the effect of low blood pressure, or else it didn't arise in my dosing regimen. Howard J. Scheiber, PhD

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Another question: How close is Sinemet ER, which will cost me a great deal less than Rytary, to Rytary itself. That is a question for my neurologist

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@hopeful33250

@hjscheib

I'm not sure about how different meds will react with Rytary. I've never taken Rytary. I did take Venlafaxene for a couple of years and it did not work well for me. However, I was taking a much smaller dose than you.

I switched several years ago to Cymbalta and feel much better. Cymbalta is good for sleeping as well as for pain. Talk with your doctor and see what he/she feels would be a good substitute for Venlafaxene.

If your doctor approves a change in meds, will you let me know how you are feeling?

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I'll be talking to my psychiatrist in early October and I will get an opinion about Cymbalta – adverse effects? headache? etc.I have had no adverse effects with the use of venlafaxene

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