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About AQHA270

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  1. Thanks ! I just wish it didn't take so long to get appointments !
  2. I posted last fall about my issues with Sinemet CR and my PD nurse practioner not being willing to prescribe the Immediate Release just give me a jump start in the Am or a little rescue due to the slow kick in of the Sinemet CR. I was taking Sinemet CR 25/100 initially along with 18 mg ropinerole and Azilect. Instead of adding the IR she increased my CR to 50/200 3 x a day. It made me crazy. I was way over medicated . After 2 weeks we went back to 25/100 CR 4x day. And reduced my ropinerole to 12 mg. This is much better. Most of the time I function pretty well. But I still , more often than I'd like find that usually it might be my 2 or 3 dose doesn't kick in for a couple hours and then I take my 3 dose , or 4th and it's like they both kick in at the same time. I do not feel as manic but I get what I think is slight dyskinesia. I just keep wiggling my left foot or if I'm standing my husband will notice a slight rocking motion, he calls it. When they don't overlap I'm really good. I also just discontinued Azilect when it went to generic and the price for name brand went to$243 and $143 for generic w insurance! I have noticed no ill effects from quiting that. I exercise daily and ride my stationary bike 3-4 miles a day. Plus ride my horse as much as the weather this time of year allows. I still think I could do better if medicated differently. I just feel there has to be a happy medium. I have an appointment with a new MDS at a Motion Disorders Clinic in April. I'm hoping he will be able to smooth things out for me. Horse show season is coming and I am not willing to give that up and don't want to have a wiggly foot . I also find if it wears off quickly my internal tremors are horrible. As soon as the med kicks in the tremors are gone. I will update again after I see the new MDS!
  3. I have been taking Azilect for almost 4 years since my diagnosis in 2013. I am also taking generic Simemet 25/100 CR 4 x day and 12 mg . Ropinerole once/day. After some tweaking I'm getting the Sinemet CR are down to a pretty good timing provided I don't eat a heavy meal anywhere near my dose or get constipated. My quiestion is......I got approval from my Insurance company to stay with the namebrand Azilect since I'd been on it so long. Hated to switch to a generic and have issues. I went into sticker shock when I went to pick it up at the pharmacy yesterday. Even with my insurance saying Ok it's still $243 !! Generic is $143! Since I've started it it copays have gradually increased from $25 to $50 and then $75 . Now this!!! I had them give me the generic to see what happens. Even that is a bit pricey. So my question. How benificial is Azilect? Is it worth taking ? i know they say that it can be neuro protective and basically mild symptom relief. If it's not worth taking it would certainly make my med's more affordable. It's the most expensive one I take. Just wanted to know what your opinion was. These drug prices are getting rediculous and it's very frustrating! I was a care giver myself for 30 years as Dental Hygienist. It's discouraging how the insurance companies dictate treatment and medications and it's so very wrong!!!! I'll be anxious to hear your thoughts!
  4. Thank you Dr. Okun! I hadn't been on here for awhile and just saw your response. We did cut the dosage back to the Sinemet 25/100 every 4 hrs. and that is working much better. I am back to being me again. As long as I stick with the every 4 hrs during the day I'm good. Is it ok to crush a 1/2 tab of the CR 25/100 ?
  5. Dr. Okun ... I have been diagnosed with YOPD. for 3 1/2 year s but most likely looking back i've had this at least 6 yrs. . i am very active,exercise , horseback ride and do all I can to stay active so medication issues really frustrate me. I have been seeing a NP that was working under a MDS and the MDS is no longer there. I had done well until April of this year on Ropinerole Er other some issues with the generic manufatures and eventually found a brand that was tolerable. i decided it was time to start sinemet in April and so she prescribed 25/100 CR 3x day. I'm not one that sleeps in and start my day very early . The Cr just did't kick in soon and i sometimes had absorption issures. When absorbed properly it worked great. I just felt I needed a little kick at times so suggested an Ir to help first thing in the morning or if I felt the CR needed a boost.She refused to do that and instead prescribed 50/200 CR 3x a day along with the 18 mg of Ropinerole. This seems like too much medication . i feel like i'm on some kind of drug that makes me hyper active . I talk a mile a minute. It's crazy. I can fly thrut the house, run up the stairs like a crazy person and I feel like my whole body is vibrating. And then when it wears of I crash. i've also felt ike it wears of that my loints are very stilff and painful. She will not add the IR. . She says at my age......52 ...that the Ir has a greater riskl of dyskinesia. I feel like the 50/200 is already causing dyskinesia's. There has to be a happy medium. when 50/200 of CR is too high and 25/100 Cr works but i feel like a "little" more would work better. My stress level has been over the top so the IBS issuers I've had since a teenager have been acting up too for the first time in a long time. My Mom has been in the hospital and my horse that has been a big part of my mental ,emotional and physical therapy will probably have to be put down soon and I'm not dealing well with that. I'm even wonderiing if due to my stress related IBS issures if a lower dose of Sinemet IR closer together might not be the way to go. Any advice would be greatly appreciated. I feel I need to seek a new MDS but in the meantime I''m hoping to convince the NP to try something differnt. I'm really pretty miserable and need to find something that works better soon. I don't have time to feel this way. with all of what I have on my plate right now.
  6. Thank you . I'm hoping we can try your suggestions . My next question is Sinemet IR as sensititve to protein as the CR ? It's usuallly my last dose of the day of the CR that I have trouble with. When I have the most food in my stomach it seems. I have also had more constipation issues in the last few weeks. Its the first time i've ever had constipation issues in my life. I've started takiing a fiber supplement . I'm wondering if that interfers with the Sinemet CR if I take that at the same time. ?
  7. I sent a message to the NP that has been treating me since the MDS left. Explained all of my issues and concernes. Hopefully she listens to me this time.I just know it's goint to be impossible to get an appt anywhere in less than 3 mos.
  8. Ok any suggestions on what to do until I find a new MDS . I can't go on like this much longer. I can tolerate it during the day but not at night. . It could be a month before I see an new one.
  9. I was diagnosed 3 1/2 years ago but had symptoms for probably close to 6 yrs. I did very well with azilect and ropinerole from June of 2013 other than some issues with some generic manufactures but finally found one that was OK.In March of this year I elected to start Sinemet. My symptoms had intially all been left side onset but started to get some slight tremors on my right side and a little more rigidity in my right leg as well. I was put on SInemet CR 25/100 3 x day. It worked great. Took care of almost all of my symptoms. I was moving much faster and feeling great. The only issue I had was I didn't feel it kicked in quick enoug in the morning and it was out of my system by bedtime and I was having trouble sleeping. So I suggested adding a Sinemet IR in the am to get me going . And one at bedtime.SHe told me that she didn't want to give me the IR due to the increased risk of dyskinesia down the road. I"m 52. So she told me she'd rather just up my dose to 50/200 3 x day. I also take 18 mg of Ropinerole ER in the am.It's working but doesn't kick in any faster and I feel hyper. I can run up the steps and fly thru the house cleaning like a mad woman . Run across a parking lot and push a cart thru walmart faster than ever but then when it wears off at night after that last dose I have terrible internal tremors and feel like my whole body is vibrating. Right now my tremors are so bad I can barely type. Earlier in the day I could type just like I used.too. I think i"m over medicated???????? I just want to feel like I did before this change. I still think adding the IR would have been best at the same dosage of 25/100. Or do I just have to adjust to the new dosage?
  10. I was diagnosed 3 1/2 years ago with PD at age 49 but had symptoms since probably 2010,2011. I did very well for a couple years with Ropinerole ER and Azilect. This past March I elected to start sinemet. I was prescribed generic sinemet CR 25/100 3 x day along with the 18mg of Ropinerole ER. I felt my morning dose wasn't kicking in quiick enough or lasting long enough and was out of my system by bedtime. So 2 weeks ago I was prescribed 50/200 CR . It works great and when it's on I feel great and can function very well. Nobody would ever know I have PD. But when it wears off I am really jittery with internal tremors and feel like my whole body is vibrating. It's really an uncomfortable feeling. When the next dose kicks in it goes away but that sometimes takes up to 1 1/2 hrs. I also find that I'm very sensitive to protein so try to eat more in the evening meal and then my evening dose is not overly effective. I also wonder about the 18 mg of ropinerole along with this sinemet dose. I've read that the CR has much more of a chance for dose failure than the IR but my MDS doesn't want me to take the IR because she feels it's more likely to cause dyskinesia. Any suggestion? Willl the jittery wearing off effect go away eventuallly. I'm very active and run on my treadmill, horseback riding and hiking. But when I'm off the jitterness just is awful! Thanks for any advice! Robin
  11. That's how I feel on the requip I'm drugged in a fog . My Neuro agreed to start Sinemet CR 25/100 I think twice a day but did not recommend lowering my ropinerole dose which is 18 mg . I may need to question her further . Thanks !
  12. I'm considering starting Sinemet . I've read all the controversial issues regarding starting or to wait . I'm almost 52 and have been Dx 3 yrs probably had it close to 5 . I'm taking 18 mg of ropinerole and azilect . For the most part I function pretty well and I feel progression is slow but the rigidity and slow movement is a little worse in particular my left leg which is a bit of a hindrance riding my horse . Just can't always communicate cues as well and I'm not ready to give it up . It's probably been the best thing for me ! My question is do most people reduce the dopamine agonist when starting Sinemet or do you just add the to the current dosage ? My dr said she would start me on a low dose but would leave my rooinerole at the current dosage . I've read rest most either reduce or stop the agonist all together so I'm a bit confused !
  13. Ive been on the fence for awhile about when to start Sinemet . I'm seriously considering it . I am functioning quite well everyone says on the 18 mg of ropinerole and azilect . I feel I want to be better. I'm almost 52 diagnosed almost 3 yrs but have had symptoms for close to 5 yrs . Im feeling like it's time to start Sinemet . I show horses and my left leg and foot don't cooperate as well as they used to when in riding ... A little more rigidity and slow movement . This hinders my cues to my horse a bit . I'm not ready to give up showing ! It's my passion . My question is do most reduce the dosage of ropinerole when starting Sinemet or stay the same . My Neuro said we'd add a low dose of Sinemet to my current regimen. Is this what most do ?? I'm just confused as I've seen that most either get off the ropinerole or reduce the dosage ?
  14. Update on my generic ropinerole issues. After some research I realized when I started having problems was when I switched from Walmart pharmacy to our local pharmacy. My ropinerole from Walmart was Mylan. I had a bottle of 8 mg left from Walmart so for experiment sake I took two for a couple days to = the 16 mg. Much to my amazement side effect were greatly reduced and I was functioning much better and feeling semi human again. So I called my pharmacist, who has been great thru all of this and he couldn't get Mylan. I called 5 pharmacy's . Nobody could. So then I realized my 12 mg was from Sandoz and the 4 mg was Dr. Reddy. I asked if I could get both from the same manufacturer and suspecting the 12 mg was the major culprit he ordered the 12 mg from Dr. Reddy. worked! I'm so much better again. It was obviously the Sandoz that was the culprit. Amazing! So we are going to try to stay with the same manufacturer. Dr. Reddy. After somemore research I discovered that Dr. Reddy has some association with Glaxo Smith Kline who manufactures Requip XL. My pharmacist thought GSK might possibly own Dr. Reddy's so possibly they are manufactured very simular. Goes to prove you have to take things in to your own hands sometimes. I feel sorry for those who have no medical background and think they have to go thru life feeling drugged and sick. Fortunately my background as a Dental Hygienist has helped immensely! Thank you to all who helped on this as well!
  15. We tried that but our insurance has a mandatory generic policy they call a "hard mandatory provision". All that we were totally unaware of when purchasing the insurance. I still can't find those words in the policy. I argued for a half hour with customer service and all they would say was that it was there.