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New MDS and Med changes.

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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

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Since Parkinson’s strike us all a bit different and we’re all at different stages of this dance, what works for one person might not work for another.  Also, since I'm not a medical doctor, don't know medicine, the human body or Parkinson's, take what I say as worth a grain of salt and run it by your MDS before attempting anything.

Currently, I’m take 25/250 mg C/L, 5x day, and though my MDS talks about finding this place of Xanadu called “optimum dose,” I’m thinking "optimum" probably doesn’t mean perfect.

Started medications in December 2011 and along the way, I have picked up the following drugs and supplements that though they may have a different primary purpose, one side effect was that in some noticeable way they also helped extend the duration of the C/L on-time; helped bridge the gap between C/L doses; helped smoothen out fluctuations in C/L; helped reduced the distance of the fall during off-times; helped reduced the slope of the C/L off-time cliff; helped slow the off-time fall; or, helped reduced the cognitive graying out and other cognitive issues caused by Parkinson’s. None of these products are perfect, but every small bit helps me so immensely.

[My descriptions above and below are not very medically proper and one-day I might take the time to research the proper words, in the meantime, these are the best words I’ve found to try and describe this in-describable beast.]

1) Amantadine (100 mg, 3x day).

2) Entacapone (200 mg with each dose of C/L).

3) L-Theanine (200 mg with each dose of C/L).

4) Istradefylline (40mg) 1x day (a trial medicine, not yet FDA approved for use by those of us in the U.S.).

5) Previously tried Azilect but gave it up because observed no benefit.

6) A New C/L Manufacturer or Probiotics?

Back in March 2017, my pharmacy switched the manufacturer of the generic Sinemet (C/L) I use from Mayne Pharma to Sun Pharma. The pharmacy didn’t tell me and I didn’t notice it at first.

About the same time a friend who was getting over a case of pneumonia, gave bought me a one-month supply of probiotics he was using. (OTC with eight of the standard strains.) He said that in the past when he’d had an illness, he found that taking these probiotics helped “re-charge” his body and he recover faster.

I was (am) skeptical and didn’t understand how they could help because I didn’t think I had a stomach problem. Furthermore, I can’t really find much information about probiotics other than manufacture sales pitches that claim probiotics cure every unspecified problem imaginable (if that is possible); and, scientific journals concluding that while probiotics might be of benefit, currently little is known about the millions of types of probiotics and how they work, but the authors hold out hope that in 20-years, further research will pin-pointed which probiotic is beneficial, the bodily system on which it works, and a dosing/frequency formulation.

About a week after the switch in the C/L manufacturer and starting the probiotics I noticed that my C/L was suddenly stronger, lasted longer and was more effective. It seemed Parkinson’s had released its grip a bit and I had been taking advantage of every inch. I was more active. It was like I was on some sort of super C/L. It didn’t wear off as quickly with activity, my mind was clearer. [I really should spend the time to write all the changes down, but I hate Parkinson’s and hate thinking about it.]

It wasn’t a sudden change. It didn’t occur on any one-day that I could point to. I noticed it sort of in hind sight one day when it struck me that I’d been doing activities of a duration or intensity, that usually wore me out and from which it usually took a couple of doses of C/L before Parkinson’s was once again slightly more reigned-in.

When I told my MDS in April, the a doctor who is working on a fellowship in movement disorders with my MDS, said that even though the FDA requires the drug manufacturers to use the same ingredients, the FDA does allows a variance in the quantities specified on the label of between something like five and 10 percent. So one manufacture of C/L can sell a pill labeled as a 25/250 that actually contains 10 percent less active ingredients; while another can sell the same claimed dose with 10 percent more.

I had forgotten to take my old and new C/L bottles with me to the appointment as well as the paper on which I had written down the two company names, so we couldn’t determine at that time what is the case with these two manufacturers or whether the switch was the cause of the improvement. In either case, my MDS jokingly said he’d take credit for the improvement.

Since that April appointment, I ran out of the probiotics. After a while I did notice (in hindsight again) that those nice benefits had quietly disappeared. I am still not sure what brought about the improvements and didn’t buy a new supply of probiotics for over one-month. A little over one-week ago I went out and bought another 30-day supply (I think this one has 10 strains) and have slowly noticed a return of those March improvements. Well, not only have I noticed, but my wife and daughter have said something has changed.

P.S.: My MDS is glad I haven’t stopped fighting Parkinson’s but keeps trying to remind me that there is no cure for Parkinson’s. He then goes on to tell me to keep trying because all-in-all, western medicine still knows very little about Parkinson’s or even how the human body works.

I normally wouldn't test two drugs/supplements at the same time because I can't distinguish the benefits (if any) one from the other.

7) Sleep. Yes, I know, “good-luck with that.” But when I do get a good night’s sleep, I do so much better then next day. Or is it that when I don’t get a good night’s sleep, I do so much worse?

10)  I just realized, there is no way for me to talk just one tiny aspect of Parkinson’s, because Parkinson’s is so invasive to just about every system in the body.

9) Glad you found an MDS (and staff) you like. Parkinson’s has taught me that not all physicians are equal.

10) Anyway, hope this was somewhat helpful. Everyone here is going to have different experiences, stories and lists. (It’s a Parkinson’s thing.) Sorry for rambling on so long. (It’s a Parkinson’s thing.) Hope I didn’t get distracted and leave out too much information. (I usually do, and when I do, again, it’s a Parkinson’s thing.) Hope I read your question correctly and gave a response somewhat along the lines you were seeking. (I don’t always, and again, it’s a Parkinson’s thing.)

11) One last thought: I try not to dwell too much on anxiety (or other Parkinson’s induced problems). Seems that the smallest, most insignificant thing can bring on a massively unproportionate level of anxiety in me that I if I continue to think about will just grow to such an extent that it takes C/L days to clear. Rather, what I try to do is tell myself that the anxiety (or what ever) is a Parkinson’s thing. I make a mental note that it is occurring and then tell myself that it’s Parkinson’s. My hope is that this will give my brain permission to put the Parkinson’s thing aside and let me move on with life. (I name it; Put it aside; and, Forget about it.) It doesn’t really fix issues like muscle fatigue, pain, stiffness, tremors, dystonias, etc., but it helps my brain understand (or reminds it) what is happening, and that now it knows (remembers) the cause, it can move on.



Edited by BigRingGrinder
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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.

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Nice write-up, BigRingGrinder. 

Just a thought as to Probiotics:  SInce so many illnesses are now being found to originate from the gut, it would make a lot of sense that Pre- and Pro-biotics would help a lot of health issues.  I have heard that refrigerated ones are better than shelf.  I have found a grass-fed organic yogurt that is not only delicious (even just plain), but full of fizzy enzymes.  It's Maple Hill yogurt, which can be found in both health food stores and some regular grocery stores now.  It's important not to get taken in by regular yogurt products which contain so much sugar and so many additives that it may not work nearly as well as or be as good for you as the organic yogurt.

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