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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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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.
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1 ReactionHello @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?
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2 ReactionsHave 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.
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1 ReactionBlood 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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1 ReactionThat 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.
Yes I am still taking Rytary and it has really helped my off time. I will see my Neurologist on Wednesday for my every 4 month check in. My question to him will be: Why do I have such a good "on time" after taking my morning dosage but my afternoon dosage which is the same doesn't give me the same energy lift? I take 3 capsules 8 hours apart beginning at 6:00 am, then 2:00 pm and then at bedtime 9:30 pm.
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2 ReactionsHello @tllaes
I noticed that it has been over three months now since you switched to Rytary. I hope that it is still working well for you.
As you are comfortable sharing more, I would be interested in knowing how you are feeling and managing with the Rytary.
Is the "on-time" still showing an increase?
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