Parkinson’s Women Support sent out a questionnaire to 70 women for some feedback on their experience taking the prescription medication RYTARY (rye-TAR-ee) to treat their symptoms of Parkinson’s disease. The questionnnaire was sent to the same 70 friends as those who were invited to participate in our recent poll on Neupro. The day after we published our story about the poll of women’s experiences trying Rytary™, several latecomers responded, changing our original tally.
Our poll on using Rytary now shows the same tally as our poll on our experiences using Neupro patch
The results of the two usage polls are interesting because now both Rytary and the Neupro patch ended up having identical tallies. Of the 41 women who replied to each of our polls regarding their use of Rytary and/or the Neupro patch, 30 have not used Rytary, 30 have not used the Neupro patch. 11 women have used or are using Rytary and 11 have used or are using the Patch. Three women out of the 11 have tried using both Rytary and the Neupro patch at the same time.
Although Parkinson’s Women Support members realize that every person with PD has unique display of symptoms, we find that by telling our personal stories, we gain broader knowledge of PD and a deeper understanding of treatment for our own progression with the disease. Our intent is not to prescribe medical advice about the diagnosis, treatment or other medical aspects of PD but to share our experiences with other women. Always check with your movement disorder specialist for questions about the prescriptions and treatment that is best for you.
Approved in January 2015
Impax Pharmaceuticals, a division of Impax Laboratories, Inc. (NASDAQ: IPXL), announced that the U.S. Food and Drug Administration (FDA) approved the prescription medication Rytary™ in January 2015. Rytary™ is an extended-release oral capsule formulation of carbidopa-levodopa, for the treatment of Parkinson’s disease, post-encephalitic parkinsonism, and parkinsonism.
Rytary™ has been shown to benefit both early PD symptoms and reduce OFF time in patients that are experiencing a “wearing off” phenomenon. Clinical trials indicate that Rytary™ may provide a longer and more stable duration of action compared to carbidopa/levodopa.
Inside the capsule
After you swallow a Rytary™ capsule, the medication is released from the capsule and stays in your body for about 4 to 5 hours. Rytary™ capsules are manufactured so that they contain beads that release carbidopa/levodopa at different rates as they dissolve, thereby allowing absorption in the gastrointestinal track over a prolonged period of time.
The Rytary™ website description indicates that capsules should be swallowed whole with or without food. A high-fat, high-calorie meal may delay the absorption of levodopa by about 2 hours.
Adverse effects are possible
Adverse effects associated with the use of Rytary™ may include, but are not limited to, the following:
Nausea • dizziness • headache • insomnia • abnormal dreams • dry mouth • dyskinesia • anxiety • constipation • vomiting • orthostatic hypotension.
What 8 women say…
The 11 women we polled began using Rytary™ in April through November 2015.
Why they’re taking Rytary™
The newest participant using Rytary™ had only taken the medication for two weeks at the time of the poll. She said “I really hope that Rytary™ will work for me as the Sinemet® (a combination of carbidopa and levodopa for the treatment of Parkinson’s disease) I was taking every 2 1/2 hours was not holding long enough.”
Another woman who is on her second try of Rytary™ said, “My main goal for switching from Sinemet to Rytary™ is to minimize the dsykinesia I have after having Deep Brain Stimulation. I like the concept of the drug’s slow release of carbidopa/levodopa throughout the day.”
Eight women we polled who took Rytary™ said that their improvements after taking the medication were major or moderate. Improvements included a decrease in “off time”, better control of stiffness and tremor, and less nausea.
One user noticed her movement is much quicker – she can easily rise from sitting position, turn over from one position to another in bed, and get in and out of bed. She said “My thinking improved. It felt like a cloud was lifted from my brain…”
Another user noted, “I only have to take Rytary™ 3 times a day instead of 5 times a day for Sinemet. There’s less of a roller coaster between doses during on-off periods.”
One participant explained that instead of taking 1 carbidopa/levodopa 25/100 pill every 4 hours, 5 times per day, with her arm shaking uncontrollably the last hour of each pill, she began taking Rytary™ accompanied by one Carbidopa 20 mg capsule size #3 to avoid nausea. She has now worked her way up to 3 capsules of Rytary™ and 1 Carbidopa 20 mg capsule size #3. “My arm shaking is now almost non-existent. I also continue to take 1 Azilect 1 mg tablet at 6 am and 2 Ropinirole ER (generic for Requip XL) 2 mg tablets at 10 pm. “I have the will and energy to do more things each day.”
Another user said “I’m still working out the dosage between 95mg and 145mg. It’s takes some time to figure out the right dosage.”
One user reported, “Taking Rytary™ feels so different from Sinemet that I’m surprised it is the same molecule. It is not just more constant: the way different muscles & nerve system behave is very different. With carbidopa/levodopa my feet and hands hurt in the morning. Carbidopa/levodopa never helped the pain go away without huge dyskenisia. Rytary is more effective in reducing the pain for me.”
On user said “I don’t get the big surge up and the big sleepy crash I used to get 45 minutes after taking Sinamet.”
Negative Side Effects
Reactions to taking Rytary™ were across the board. The worst side effects the women experienced were feeling dizzy, low blood pressure, weak, diarrhea, sleepiness, nausea and dystonia. One also felt insomnia, manic mood and increased libido.
With the exception of one participant who had no problems taking Rytary™, 7 of the women thought that taking the large capsules was difficult. One person mentioned that when she increased from 2 to 3 pills she felt extremely tired and napped almost 2 days. Now that she has been taking the medication for a while, she is “feeling less tired and accomplishing more each day than she has in years.”
Another woman said that she was miserable for her first week taking the new medication as the off time was particularly intense with severe tremor. After consultation with her doctor, she upped her dosage to 3 Rytary™ 4 times a day with Sinemet taken as needed between doses. With the change in dosage, she was able to have “a wonderful, glass-smooth day with very little tremor!” But then she developed diarrhea, so she is backing off a little before she can continue increasing the dosage.
Another user said “When I first started on Rytary™ at 95mg per capsule I took one every four hours four times a day and I experienced a mild headache with anxiety at 9am every day. The headache went away over time, but the anxiety stayed for 3 months. I stopped taking it then, but I resumed it a couple of months later to give it another try. I think the anxiety has gone away as I take the dosages closer together.”
One woman stopped taking Rytary™ after 3 days because the side effects were too severe. She stopped taking Sinemet to try Rytary™, but since dropping Rytary™ she has returned to Sinemet.
Another user described a major difficulty in fine-tuning a dose of Rytary while also using a Neupro patch. “Now the result is so much better than carbidopa/levodopa at peak!”
6 applicants said they always took their medication at the proper dosage and times. Two applicants admitted they usually took their medications at the proper dosage and times. Their doses varied between 2, 3, and 4 capsules three to four times daily.
One user said “Night-time insomnia is a continual problem for me.”
Rytary™ as a replacement for carbidopa/levadopa and entacapone
Most women stopped taking carbidopa-levodopa 25-100 to take Rytary™. One woman switched back to Sinemet after 6pm to avoid the insomnia and somnambulism she experienced on Rytary™. Two women also stopped taking entacapone (Comtan®), a medication commonly used in combination with other medications for the treatment of Parkinson’s disease to take Rytary™.
A participant on Medicare said that her pharmacist quoted Rytary™ as costing $800 and that only half was covered by Medicare. The cost of the medication for the women covered by insurance ranged from $50 to over $400 a month. One participant said that health insurance providers United Healthcare Community Plan (UHC) agreed to cover 6 pills/day after she appealed twice.The Rytary™ website offers a coupon for an ongoing $25 copay.
Five women offered the following comments about taking Rytary™:
“Don’t give up too soon when you start. It’s really important to titrate Rytary™. It is not a one to one conversion with Sinemet. I take a 6 am dose and then one in 5 hours and then one in 6 hours. I needed a shorter interval in a.m. than later in day. Talk with your Dr. before giving up. You may need to take doses 4 times a day with shorter interval and variable amounts each time. It has been super for me. Feel so much more solid and have fewer tremors. I do not use Neupro patch or any agonists for tremor. Only Amantadine and Azilect.”
“By the third day my blood pressure was low and I felt ill, weak, tired and unable to move around without being dizzy and afraid I’d fall.”
“I have found it to be much more effective than the “regular” carbidopa-levodopa, and it makes my daily life more manageable. Taking it with a heavy meal seems to make it slightly less effective; sometimes need to add an extra capsule.
I felt so much better even when I started vomiting from taking it the first time, I couldn’t wait to take it again. Taking it with food has taken care of the nausea. Even with the tiredness I am not planning on stopping it ever. Be sure to take Rytary with food to avoid nausea.
The insomnia effect lasts much longer than the anti-PD effect (6 hrs vs 3-4 hrs) and may not work for you in the late pm. Rytary™ takes care of symptoms of dystonia better than Sinemet for me. The manic effect I experienced and other side effects became much lower after 2-3 months of taking it, while anti-PD effect remains strong. It keeps you skinny! Rytary™ may give you headaches and promote hyper-focusing and OCD behaviour.”
Seven out of 8 women in our poll are continuing to use Rytary™ due to the positive effects of the medication on their Parkinson’s disease symptoms. Future clinical studies may indicate if the medication reduces the likelihood of developing motor complications and dyskinesias and if the probability of developing motor complications in PD with levodopa use will be lessened. One user concluded “I’m still working out the kinks with Rytary. It takes time.”
Other patient evaluations on Rytary™ can be found on the Patients Like Me website.
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen