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.

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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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@hjscheib

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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Hello @hjscheib

It sounds like you have a lot of meds to sort out with your doctors. It is difficult at times to know what med might be causing different problems. You might consider keeping a journal of the time you take your meds and the time of any responses. This may help you sort out the fatigue.

You mentioned low blood pressure. Do you monitor your blood pressure daily?

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@hjscheib

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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Hello @hjscheib,

I'm not sure that I'm familiar with Sinemet ER. I do take a med that has the brand name of Stalevo (generic name:
carbidopa/levodopa/entacapone). From my understanding, the ingredient, entacapone, is the part of the med that makes the Sinemet stay in the brain longer. Is this what you mean by Sinemet ER?

If so, I have taken one a day for a number of years and I've found it very helpful.

I would be interested in finding out more about your decision. Would you post an update?

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Will share my decision about Rytery as soon as I have discussed all the issues - especially the adverse effects ... like irritability; anxiety; loss of physical strength in my legs (primarily the thighs) which doesn't help my ability to walk distances or take "excursions" in or around my neighborhood. Might be a question of dosing, although my wife just thinks - having watched it and me over the past 8+ weeks - I ought to discuss the use of another drug with fewer nagatives attached to the "on" or off periods. Will certainly bring up the use of Stalevo, (Sinemet ER carbidopa/levodopa/entacapone)

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