My hubby now has a lot of off times, especially in the mornings...I read there are medications for this but worry about the side effects..Rytary is one of these...Is anyone on any of these meds and how are you doing on them?
Everyone is different, but my husband tolerates Rytary very well! Since it is timed-release, it works better throughout the day, although lately not as well as it did. Our doctor is very conservative with medication and upping doses and we are glad because once you cross a certain line, other problems can happen. He did faint once, but I will never know if it was the Rytary or not because it was a hot July, he just got out of the shower and I was rubbing medical Marijuana grade lotion into his shoulder. Someone gave him this lotion. He knees just buckled but it happened slowly and he did not hit his head. He has not had one episode of dizziness since and that was 3 years ago. I am pretty sure it was the lotion that made that happen. Ironically, that was the only thing that eased his pain, but we are holding off of the medical grade CBD products until he absolutely can't stand the pain because of that fainting incident.
He does also take a regular carbadopa-levadopa mid-day (in addition to Rytary am and Rytary pm), but lately when that carb-lev wears off, it is like a light switch thrown. He used to take requip but stopped about a year ago and that's good. The only other thing that is happening lately is that he can't stop himself from talking over you when you are in mid-sentence. It's weird.
Also, Rytary does make your urine brown, so if you ever go to the Urologist or the hospital please tell them that in advance!
Please know also that the insurance companies don't like to pay for Rytary which is HORRIBLE because it's time-released which to me is medically necessary and why does a non-medical professional person in accounting get to decide if Rytary is "Tier 1 or Tier 3 or whatever." Anyway, they still pay for most of it, but we have to pay $100 out of pocket each month. For us, it is well worth it. I don't know if others have this level of success with Rytary, but we are very thankful that drug.
Hi Sue,
I’m not on Rytary but I know many here are. It is very important to work with his neurologist, you certainly can ask about a specific medication and then trust him/her to prescribe the best medication to treat your husband. I’m glad you are being proactive in his treatment, he needs a strong advocate to speak to what he may not be able to.
Be well and stay positive!