Is anyone using Rytary?
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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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?
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.
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
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?
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.
Hello @aspendon and welcome to Mayo Connect's Parkinson's discussion group. It is good to have you join us!
I'm sorry to hear that you are having problems with weight loss, dyskinesia, and depression. That is certainly a difficult combination of problems.
You do not state how long you have had Parkinson's, nor how long you have been taking Rytary. That information might be helpful. I understand what @tllaes is saying that discussing the dosage of meds with your doctor might be helpful.
On WebMD's website, there is a list of side effects of Rytary and some of the side effects you mentioned are listed. Here is the link to that article for you to read, https://www.webmd.com/drugs/2/drug-167580/rytary-oral/details/list-sideeffects.
Other than DBS, what other options has your doctor suggested? How long have you had PD?
Have you asked for a higher Mg formula for Rytary as you are on the lowest? Weight lost might not be due to Rytary. What does the Neurologist think?
<p>Rytary Dose? I take 3 pills 4 times daily. 48.75-195 mg ,</p><p>I was great for a long time, then I lost 50 pounds. since then I have Dyskansias almost daily and depression and mood extremes. Does anyone have similar reactions? My neuro wants me to have DBS which is A choice but could I just need a dose change?</p>
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.
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.