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About AQHA270

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  1. AQHA270

    New MDS and Med changes.

    Thank you for your response! I have tried probiotics due to may lifelong IBS issues and I have them , just half the time don't think to take them. I have thought all along that my digestive system may have some bearing on the absorption. Anxiety of course, stress all contribute to my IBS. I believe the MDS was wanting to address my Anxiety issues first but gave me the option of changing meds around and said as long as we did one thing at a time. My husband thinks I should have gone along with addressing the anxiety issures as well first. I'm a bit bull headed. I was a care giver myself for 30 years as a Dental Hygienist and I'm not good at being a patient. I hate that this took away a job that I loved and and a good paying job. I was 48 and worked one year after my diagnosis. I quit because I knew that I did not need the stress and I needed time to exercise and after 8 hrs of sitting working on patients I had no energy to exercise. So I am quite fanatic about my exercising too. At almost 53 when my meds are on I can hike in the woods and up hills , keeping up step for step with my husband. He says that all I talk about anymore is PD and my med's and he's right. The only time I don't dwell on it is when I'm riding my horse . I was not like that until the last year. I think it's just hit home that this is not going away. I will definitely be more diligent about the probiotics. The L- Theanine sounds interesting too. I have started taking magnesium citrate capsuls at bedtime and that is helping me relax and get to sleep along with some of the IBS also. I don't want to take anymore C/L...just want to opitimize what I'm taking. Over all I'm much happier with the immediate release as it certainly kicks in quicker the the controlled release did.
  2. AQHA270

    New MDS and Med changes.

    I have a new MDS and am very happy with them and the fact that they listen and it's more of a team effort. I've been diagnosed for 4 yrs and just started Sinemet l year and 1/2 ago. I've had symptoms since 2010 when sense of smell changed and acutally probably longer than that had noticed some subtle symptoms on my left side. Basically before changing to the new MDS I was overmedicated and we are starting over. I was taking Sinemet CR 25/100, 4x day with 18 mg. of Ropinerole XL plus Azilect and Amantadine. The Sinemet CR was unpredictable and would take forever to kick in and sometimes it seemed like it build up and then I was over medicated. So we have slowly changed. I saw the new MDS in April. We've tried to make one change at a tiime so the first thing was to change from the Sinemet CR to Sinemet IR 25/00 3 x a day. and reduced the Ropinerole to 12 mg. I was having a terrible time sleeping so swithched the Ropinerole to night time gradually reducing that to 4 mg. I"m sleeping much better . After switching the ropinerole to night time the sinemet was not lasting long enought at 3 x day. So we bumped it up to every 4 hrs. 5 times day. It is much better and I don't have't the overmedicated feeling and the slight dyskinesia.s mostly gone away other than my husband says sometimes he sees me rock my foot back and forth slightly for just a little while. The problem is I'm only getting 2 1/2 to occasionally 3 hrs of on time. So if it wears off a half hour to an hour before my next scheduled dose and then takes a half hour to kick in ....I get really panicky and frustated for that off time. Which I think the anxiety over the off time does't help at all. What are some of you taking to extend the on time. Do you take the Ropinerole during the day? The IR sinemet did last longer when I was taking the ropinerole ER during the day but I hate the way I felt. I;m feeling much more like myself by taking it at night. Do any of you prefer the Mirapex over the Ropinerole? I call my MDS's nurse who is just awesome every two weeks to update on how ii'm feeling. Any suggestions that I could possibly discuss with her to try next? I know we are all different and we are respond differently to the medication . I guess I'm not very patient and try to maintain a very active life style. I continue to ride and show my horse but I am very frustrated with the increased off time.Thanks! Robin
  3. AQHA270

    Generic Azilect

    I recently switched from Azilect to the generic. It was awful the first week and I thought it was a little better. But in between my doses of Carb/Levo CR 25/100 I get internal and external tremors and feel awful. I know it's med related. I've had issures with generic ropinerole and finally found a manufacture that wasn't too bad. It got bad again when I got a new refill of my generic CL . Once that kicks in Im pretty good but as soon as things wear off back come the tremors and awful feeling. I'm even wondering if I got a bad refill of the CL ? . A month ago I could function in between doses...now I shake so bad and feel like crap. I am seeing a new MDS on the 19th. I"ve not been happy for a year with my med's . A year ago I was doing really well on Name brand Requip XL and Azilect. Insurance made me switch to the generic Ropinerole. I went thru hell finding a generic of that that worked as well. So I started the CL in CR form. 25/100 . Titrated up to 4 x a day along with 12 mg of ropinrole ER and the generic Azilect. The CR works but somedays I have times where it doesn't kick in for 2 hrs and sometimes I feel like too much kicks and other times not enough. I questioned the CR in the first place which is what prompted me to get an appt with the new MDS. The last one would not listen to me and let me try the Immediate Release to see if I could get some more consistency. So hoping I get somewhere with the new one. I know all my side effects and issues are med related. I obviously have problems with generics but who can afford the name brands?
  4. AQHA270

    Generic Azilect

    I experienced the same thing! I've not been as good as I was taking the brand name for almost 4 years. It has leveled off some but for the first week I was miserable. I have issues with generic med's in the past. I was taking brand name Requip ER and had to switch to the generic. I was doing great on the brand name. Haven't been nearly as good with the generic. But who can afford the name brands anymore. I'm very frustrated . I started Sinemet in March of last year and feel if I could have stayed on the name brand Requip I would not have had to start the Sinemet. I am taking generic Carbo/Levo CR 25/100 4 x a day along with the generic Azilect and generic Requip. The CL CR works well but is unpredictable alot of the times and I hate that.. I"m going to check on the price of the name brand because I'm pretty sure based on my experience with the other 2 and name brand that the SInemet CR name brand would work better. Nobody can ever convince me that generics are the same . I am sure there are just some of us that are more sensitive to generics but we shouldn't have to choose something that doesn't work as well . The pharmaceutical companies and insurance companies sure don't care about the person that is suffering as long as they are making money.
  5. AQHA270

    Azilect/New generic price increase!

    I elected to stay on the generic Azilect but I don't think it's as good as the brand name. I feel more internal tremors inbetween my carbidopa/levodopa 25/100 CR doses. It's not terrible but I can tell it's not as good. As I think back .....last Jan was when all my medication issues started. I was on brand name Requip ER and doing great with just that and Azilect. Then my insurance changed and I had to go on a generic. After experiementing with different manufactures I found one that was tolerable. That's when I decided to start the cabidopa/levodopa . My Motion Disorders Nurse prescribed the CR version 25/100 and it works great but I feel it's not always consistent. It's usually good in the morning thru early afternoon but by late afternoon and evening it starts to wear off. It seems it has a lot do with how much I eat thru the day. And sometimes it takes a long time to kick in and then my next scheduled dose kicks in and I feel like it's too much. She had me try the 50/200 CR and that made me all wound up and felt like I could run a marathon. So back to the 25/100. I just feel as if I could have continued with the brand name Requip that I wouldn't have even needed to start the Carbidopa/Levodopa yet. As it is right now I'm paying $114 for the Ropinerole.ER 12 mg.which is a generic. and $124 for the generic Azilect. . The insurance I have now will cover a portion of the name brand but it would still be almost $400 for the name brand Requip ER. I also wonder if since the name brand of both the Requip and Azilect worked so well for me that the name brand Sinemet CR would also be better. I'm seeing a new Motion Disorders Specialist in April so I'm hoping we can find something that is more consistent and also get the most benefit for my money.
  6. AQHA270

    Updating On Sinemet CR issues

    Thanks ! I just wish it didn't take so long to get appointments !
  7. 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!
  8. 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!
  9. AQHA270

    Sinemet CR dose too high. Advice

    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 ?
  10. 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.
  11. AQHA270

    Sinemet CR questions

    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. ?
  12. AQHA270

    Sinemet CR dosage ?

    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.
  13. AQHA270

    Sinemet CR dosage ?

    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.
  14. AQHA270

    Sinemet CR dosage ?

    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?
  15. AQHA270

    Sinemet CR questions

    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