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How has your medication use changed over the years?
When my dad was diagnosed with Parkinson’s in 2013, he started on a very low Levodopa regimen (which helped, and further supported the doctor’s theory that it was Parkinson’s to begin with). Over the years, he’s had to slowly increase his dosage even after he received Deep Brain Stimulation. Yet I know medication looks different for everyone.
How has your medication use changed over the years?
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6 Replies
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I was diagnosed in September of 2022. It was quickly determined that I cannot tolerate the carbidopa and levodopa combination that most Parkinson’s patients take. I was not surprised, as I do not tolerate many common medications. My neurologist prescribed Rytary which is not covered under any “Affordable Healthcare”. Even with prior authorization, my copay was between $799.98 and $900.00. One loophole after another was found, which made it affordable, but I was not allowed to continue in any of these solutions. The results were that I was bounced on and off of a medication that is dangerous to stop suddenly. I will spare the details here, but it was NOT fun. From February 1 through June 30, 2024, I was denied affordable medication which I desperately need. By the last week of June, I was 90% bedridden. Because I turned 65 in July of this year, I qualified for Medicare with extra help so that I could again afford Rytary beginning July 1st. By July 7th, I was feeling well enough to go to church for the first time in 2 months. Now, I’m being told that Rytary might well be unavailable again. This is unacceptable. At this moment, only the extremely rich, or extremely poor can afford tier-3 medications.
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Luncinda,
Contact the Patient Advocate Foundation for financial aid for Rytary.
https:www.patientadvocate.org
patientadvocate.org
Home - Patient Advocate Foundation
We provide patient services, eliminating obstacles in access to quality healthcare.
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Supposedly Rytary is becoming a generic. It will be replaced by Crexont. I don’t know if insurance will help pay for it.
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Please also contact PAN, Patient Access Network, to see if they have grant monies available to help with Rytary.
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I can say that my grandmother eventually got used to the routine of taking the medication and honestly, my family and I see very good results. Of course, she makes an incredible amount of effort to stay in shape, but the quality products that we can easily find here Canadian Pharmacy Online https://www.canpharm.com/ certainly help her a lot, and we are incredibly happy when our grandmother feels better.
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you believe I used to take over 20 tabs of L-DOPA 100/25 IR a day? (note: in my country all Sinemet in market is CR, not IR or CR) ＝＝
the effect of this med is fantastic to me but I always feel that I’m drinking poison to quench thirst…….
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