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benderet last won the day on May 12

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About benderet

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  1. Following up now after some remarkable new information. I recently discontinued Enbrel due to an insurance issue and noticed after several weeks that the Parkinson's seemed better. I shrugged it off and eventually restarted Enbrel, only to see the Parkinson's get worse again. At this point I became suspicious and looked into my own medical record history with Parkinson's and Enbrel. I was shocked to find that my parkinsons symptoms really started to get worse after 2 months on Enbrel (though that was before I had a PD diagnosis). From my post above I clearly didn't make the connection at the time. With this information I decided to try going off Enbrel to see if the Parkinsons would get better. About a month after stopping Enbrel, one day I noticed at noon that I had forgotten to take my PD meds. Usually I would never forget as the PD symptoms would remind me quite loudly... I decided to just hold the PD meds and see what happened. That was 2.5 weeks ago and I haven't taken any PD med since. 1 week ago my right arm swung spontaneously while walking for the first time in years. It was a strange sensation actually, since I had gotten so used to the rigidity on my right side. While I still have some mild PD symptoms, they are nothing compared to what they used to be when I was on Enbrel. Obviously there is no crystal ball and we will see how I do over the next several months, but at this point I am strongly suspicious that the Enbrel was making the PD worse. I will note that my first subtle PD symptoms predate Enbrel, so it can't be the cause. I know this amounts to a N=1 trial, but that begs the question, has anyone done a retrospective study on PD patients with rheumatologic issues to see if an impact of anti TNF therapy could be teased out? If not, I have a project idea for any eager medical resident out there. [edit] Just found a JAMA paper [3] on the incidence of PD in patients with inflammatory bowel disease on anti TNF therapy and they suggest a protective effect, in terms of incidence. This would seem to contradict my experience, but they lumped all anti-TNF therapy together, so perhaps Enbrel is different? [3] "Anti–Tumor Necrosis Factor Therapy and Incidence of Parkinson Disease Among Patients With Inflammatory Bowel Disease" JAMA Neurology April 23, 2018
  2. benderet

    Sinemet Question

    Tjon In my personal experience, I am better off taking an evening dose even if I feel like I don't need it. I find that when I skip doses in the evening, the next day will not be as good. There is some buildup effect over time as well as you adjust. From your initial post, you seem to be on a high dose for someone that is just starting. If I am reading correctly you are titrating up to 1000 mg/day? That's a big dose. When I first started I ramped up over several months to 600 mg/day and found out the hard way that this was actually too high and causing some fluctuations (took almost a year to realize that). I added entacapone and reduced to 300 mg/day and am much better now. Everyone is different but I would recommend asking your neuro about dose schedule and if what you are currently on is too high. It is possible that the rapid titration to a high dose was for diagnostic purposes and not intended as long term therapy. (Some people are resistant to the lower doses, so some docs like to push the dose to make sure they aren't missing a benefit, for those patients that don't initially respond. It sounds like your response is not so much in question at this point though). The usual starting dose is 300 mg / day. The transition to your potential new reality may be hard but just remember that PD and happiness are not mutually exclusive. Many people are scared by the idea of a progressive disease, myself included, but progressive symptoms don't need to result in progressive unhappiness. Stay positive and enjoy the benefit that getting your meds dialed in can offer. Ed
  3. benderet

    Welcome to the club

    I forgot I had wandered out of the YOPD forum. I'm a little more surprised that your doc is so hesitant about diagnosis. From your descriptions I am surprised your neuro doesn't want to do sinemet. You sound like you are undermedicated - azilect is very limited in the magnitude of symptom benefit it can deliver. He/She may be stuck in the old thinking that sinemet gets 'used up' and should be delayed. Recent evidence contradicts this, including the largest ever trial in PD that shows sinemet is a perfectly good drug to start with. Definitely tell your doc about the ICD problems. If they prescribe an agonist anyway then my advice is to run away. On the jeans, my advice is to take them back and ask those around you to keep an eye on you. Tell them to ask you on a regular basis if you have noticed any more impulsive tendencies (including in areas other than shopping, which I encourage you to consider - you may not even realize it yet). Trust me, this can take control of you faster than you realize. There is not much evidence out there for treating ICD's other than discontinuing the causative agent. This may be another reason to switch to C/L. (But beware that C/L can come with ICD issues as well, though far less commonly than with agonists).
  4. benderet

    Back on sinemet

    I had a lot of problems with nausea, and with half a pill three times daily you do not have enough carbidopa most likely. You can get carbidopa as a separate pill. I have always needed more than the usual carbidopa and I take it an hour before the sinemet. Works like a charm. The doctors told me the same thing about crackers etc. but none of the suggestions worked - it wasn't until I convinced them to add carbidopa that I got better.
  5. benderet

    Welcome to the club

    I think many people with YOPD have a similar story of a skeptical doc that does not want to commit to a diagnosis. Second opinion is definitely valuable. I'm on my third neuro after only a few years in the club. I too started with Azilect but developed impulse control problems on it. (It's not that common for this drug but just keep an eye out and don't ever walk into a casino). I had issues with night sweats that seemed to relate to being overmedicated in the late evening. I'm on sinemet now but I generally avoid taking it after 6 pm. I also had a lot of sleeping issues and finally tried melatonin. I take 3mg in the "gummy bear" form right before bed. 30 minutes and I'm out cold till 7 am. It took a week or so to get used to but I'm glad I finally let my neuro talk me into it. (I had bad experiences previously with melatonin but found the gummy form was way better for me, and it took time for it to really help). With the amount of stiffness you have has your doc considered sinemet? As far as risk /reward it's approximately 1000000000000% safer than a narcotic pain killer. Just a thought. As for dealing with the transition to your new reality, the nice thing is that PD is typically slow and lazy as a disease so you have time to adjust. I had similar feelings as you do but then I eventually got used to it and found a good med routine and now it's just an annoyance. Just know that there is a good chance you will be able to dial in meds better than they are now and you may well feel better next year than this one. In fact I'd bet you will agree with me a year from now. I was diagnosed a few years ago and still feel better today than the day I was diagnosed. Am I objectively better according to lists of symptoms etc.? No, probably not, but I feel better so heck with it. Don't believe the myth that life only gets worse after a PD diagnosis. Hogwash!
  6. benderet

    Terrible Nauseau from Carbidopa/Levodopa

    Hello John I had issues with nausea as well. For sensitive people like us I suspect part of the problem is the half life of carbidopa (average is around 2 hours but it is different for everyone). On a 3x daily schedule, by the time you get to your next dose, the carbidopa has washed out too much - especially taking 2 pills at once. The other problem is that the time it takes for the carbidopa concentration to peak in the bloodstream is longer than the time it takes levodopa to peak. What this means is that even though you have, on paper, a "good" amount of carbidopa in your "sinemet diet", it's not getting to you at the right time. I solved this problem by taking carbidopa alone in the morning 30 min - 1 hr before the first sinemet dose, and using a 4x daily schedule of 1.5 pills of sinemet 25/100 (I have entacapone as well but that's another story). For me this mostly gets the job done in terms of nausea but again everyone is different. If I run out of carbidopa I am nauseated all day, just from the nausea from the first dose that stays with me. You can ask your doc to prescribe a bunch of carbidopa and figure out the best schedule yourself. The other thing you can do in the short term is to try to ease into the morning dose by splitting it in to a few sub-doses separated by 30 minutes, but beware I have found that this can make my usually calm dyskinesia way worse. I have also tried a 6X daily schedule which was way better than 3X daily in terms of nausea. In terms of how long for the nausea to go away, although you should acclimate somewhat over a month or so, don't sit around and wait if you haven't tried adding carbidopa. Again the key is take the carbidopa before sinemet, not at the same time. Good luck Ed
  7. Luke I can relate to your situation. I had a normal DAT scan a few years ago, and it took a year and 3 different doctors to finally get an Rx to do a levodopa challenge. My neuro came to the conclusion that everything except the DAT pointed to Parkinson's, and he is willing to say "heck with the scan let's just do what we can do to make you feel better". I've been on sinemet for almost a year now and in retrospect I wish I never got the DAT scan because it just caused a year of stress and inadequate (and inappropriate) treatment. As for a normal DAT being an "absolute exclusion for PD", there is a little more to the story than that. First, so-called "scans without evidence of dopaminergic deficit", (what you and I have) are not always truly normal, because they are interpreted subjectively and humans are wrong sometimes. (see http://www.prd-journal.com/article/S1353-8020(16)30245-0/abstract). Second, the concept of "absolute exclusion" is clinical trial lingo. From the MDS diagnostic criteria, the second sentence reads: "The criteria were designed specifically for use in research, but they also can be used as a general guide to clinical diagnosis of PD consequent to Lewy body pathology." In clinical trials, researchers typically want a "pure" sample of patients, and DAT scans are an easy way to ensure some sort of homogeneity in the study group. This is really important for research, but all it means for you is that you will probably not be eligible for some clinical trials. It does not necessarily mean that you don't have what is for practical purposes the same Parkinson's that someone with an abnormal DAT scan has. Ed
  8. I am in a similar boat as Chava. I've been on Enbrel for Ankylosing Spondylitis (AS) for several years, and was diagnosed with young onset Parkinson's disease (34yo) after about a year on the drug. I initially looked for any possible connection and only found a few things. A. First, there are a few reports of Parkinson's being induced with anti TNF therapy, though the case reports suggest a rather abrupt onset. To my knowledge there has never been a case report with Enbrel (only infliximab, referenced below). B. It is well known, though uncommon, that anti TNF therapy can cause or worsen demyelinating diseases. Enbrel is definitely implicated in this even though it does not cross the blood-brain barrier (unless administered with that specific intent). What I read from this is that Enbrel can affect the CNS, at least in principle, but again I've not seen reports connecting PD and Enbrel. C. A quick search on google scholar will show that possible connections between TNF and Parkinsons, as well as connections between autoimmune diseases and Parkinson's, have been investigated for a long time. However, I am unaware of any high-quality studies that elucidate this link beyond any doubt. Coming back to the original question, I can serve as an N=1 trial that says sinemet and Enbrel can be taken together without much regard for timing. I've been on the combination for just under 1 year and have not noticed any effect of the timing of my Enbrel. With that said, I'd be very interested in hearing anything further you have to add in terms of experience or research on this topic. Given the prognosis of PD I would really hate to be inadvertently causing it, as for me it is worse by far than my AS. [1] "Severe Parkinson's disease in rheumatoid arthritis patient treated with infliximab" Rheumatology (Oxford) (2003) 42 (5): 702-703. [2] "Parkinsonism as a side effect of infliximab" BMJ Case Reports 2016; doi:10.1136/bcr-2016-214802
  9. benderet


    I personally wouldn't worry too much about being on a boat with a small dose of ativan. If something goes bad the adrenaline will kick in. I've used it occasionally for years and I can drive etc. just fine. However, here are a few of my favorite "Ed on ativan" stories that I like to tell people 1. A couple years ago I took 1 mg of atavin after having not taken it for many years. My doc warned somewhat cheekily that it is not a "cognitive enhancer". I felt fine and decided to get some shopping done. I filled a target cart full of stuff, then proceeded to walk out of the store and put everything in my car. I was thinking to myself when I was piling things in my back seat "why didn't I get bags - that was dumb!". Shortly after I got home I realized the reason I did not get bags - that only happens when you pay for stuff! Oops! (I then went back to the store and apologized profusely for accidentally making off with $150 in merchandise). Lesson: you may feel OK but don't get in your kayak without a paddle. 2. I had an MRI scan a few years ago and I'm claustrophobic, so I took 2mg before my scan, which was at 2pm or so. That evening, after I thought the drugs had dissipated, I had a beer (emphasis on "a" and not "several"). I then proceeded to become as drunk as a college freshman, much to the amusement of my wife. Could have been worse, I suppose. Ed
  10. benderet

    Sinemet turns into skittles in the evening

    I've been on the activas brand for ahout 6 of the past 9 months. My first few batches were the teva, then I was switched to the activas, then briefly back to the teva as I describe above. The problems on the teva were all worse including being tired. When I say tired in this context I mean sleepy. I'm glad you asked because this raises a good point - I told my doctors for years that I was feeling "tired" until I finally figured out that no one knew what I was talking about. Let me break fatigue down into four separate things (not an official classification just my own): 1. "Motor Parkinson's tired" i.e. bradykinesia / stiffness 2. sleepy 3. mentally tired, i.e. difficulty focuising, ADD type symptoms 4. emotionally tired, i.e. feeling stressed out, anxious, irratible, drained, depressed, etc. For me the challenge is finding the balance between all these things. Sinemet makes 1 better, 2 worse, and 3/4 unchanged. Strattera (non stimulant ADD / antidepressant type drug) makes 3/4 better, 2 worse, and 1 unchanged. Stimulants make 2 better but 4 so much worse that I can't take them. From this it's clear that 1 and 2 will always be in conflict. Circling back to my original post, I think part of the problem when I get home is that I am going from a medical environment (I work in a clinic) with big open hallways, to a small house with clutter and noise everywhere. Accordingly, the amount of sinemet it takes to adequately control Parkinson's at work is less than what it takes at home. When I get home I quickly get frustrated tripping over toys etc and have instinctually increased my sinemet at this time of day to compensate, which then makes me sleepy. As for the question about blood pressure, I checked it out of curiosity and it is indeed a little on the low side. My BP is always on the higher side of normal but I checked it when I was feeling tired the other day and it was something like 103/62 if I remember correctly. So with all that said, to get to the punch line for those who are still reading, I am pleased to report that the citicoline I've tried has really seemed to help. In fact I feel like it helps with all of 1-4 above which is quite amazing. Of course it could just be placebo, but frankly even if it is I don't care if it helps. I also am picking up an Rx for CR sinemet today and will report back if that helps further.
  11. benderet

    Sinemet turns into skittles in the evening

    I drink tea constantly all day. Ironically it's what I always take my sinemet with . Yes I have tried not eating in evening with my 7pm dose - the problem I run into is really the fatigue. If I take enough to be "on", I'm desperate to get in bed. For example, last night I was relatively functional and took a little extra sinemet in the evening. When the kids were in bed I was miserably exhausted and went to sleep immediately at 8:15 pm (usually get up at 630 am). However, I woke up an hour later, when the drugs wore off, and couldn't sleep for 2 hours, and finally gave up and took a benzo to go to sleep. As for pill brand, I looked it up and I guess I was mistaken. The pill has a "R" logo on it which I thought was for Roche, but I guess it may be some other manufacturer. It has 539 on the other side of the pill. The teva version says teva on one side and 93 \ 293 on the other. It seems like the consensus here is to give the CR a whirl and push myself for more exercise. I'll try that and post my experience. Ed
  12. benderet

    Sinemet turns into skittles in the evening

    Lena: Thanks for the tip on citicoline. I read up on it and given that there are positive Phase 2 trials, I'm surprised it doesn't get more mention in PD circles. stump: (guessing that's not your real name, and don't I feel like a jerk if it is ) Good questions: 1. Schedule is currently 1 pill 6X per day. I take one about 30-60 min before I get up, and then every 2-3 hours all day, generally trying to avoid meals. If I'm active I'll take it more often or at a higher dose (e.g. if I'm going swimming at the gym I'll just take another dose, regardless of when my last one was). I have tried other schedules but ran into issues with side effects. 2 pills at once will sometimes make me so nauseated that I can't stand up (caveat here I'll bring up in a minute). For a while I had tried 1.5 pills 4x a day but the nausea was unpredictable and fatigue was worse overall. My neuro recommended the 6X daily schedule but is OK with me experimenting. 2. How much exercise do you think is enough? I get some sort of mild cardio (e.g. swimming with the kids) a few times a week right now, but usually on the weekends. I commute an hour to work so by the time I get home and get the kids in bed, I usually go to bed myself. 3. What dose of Rtary relative to sinemet did you switch to (i.e. did you bump up the dose because of the bio-availability difference?) 4. Speaking of IR sinemet, I found recently that there seems to be a huge difference between generic versions. I've had the Roche and Teva versions. The Teva hits me like a bazooka. Needless to say I told the pharmacist only to give me the Roche so perhaps I can try bigger doses at once again. thanks all, back now to my 5 year old that counts to 60 when I say "just a minute", and she holds me to it Ed
  13. Hi everyone I'm still new to the club (Dx ~ 9 months ago) and here is my latest question for you all. I've been on sinemet since Dx and currently take about 6 pills (25/100) per day. I generally get 2-3 hours out of each dose. However, in the evening around 7:00 pm it seems like sinemet turns into skittles i.e. it seems like it doesn't work well anymore. Is this something many of you experience, and is there anything I can do about it? For me other drugs are unfortunately off the table (except some other flavor of sinemet, I'm on IR now). Taking more helps a bit but also makes me tired. I have 2 young kids so being functional in the evenings is a big issue for me. thanks Ed
  14. benderet


    Hi Sean, I was in a similar place as you about a year ago (I'm 34, have 2 kids and busy career as well), so I'll tell you the things I wish someone told me back then. For perspective, I'm on meds now, and would agree with others that the better questions is not when to start but what to start. There are several things I wish I knew: 1. Often times you will hear concerns about dyskinesia, sleep attacks, fatigue, nausea, etc with the meds. You will also hear about impulse control disorders (IDC's), but because of their embarrassing nature, they are under-reported and under-discussed. Don't fall for that - like me, you are a young male, which puts you in a high risk category for ICD's. Be aware that if you develop one, you may not realize it until it has really caused some problems. When I started meds, I remember a pharmacist mentioning ICD's to me, so I thought "OK I'll keep an eye out for that". I wish I had realized that "keeping an eye out for it" is nowhere near enough. 2. I felt oddly calm at first too. There were then some moments where I felt like it hit me suddenly, especially when I noticed a symptom getting worse. Don't let it bother you too much - the slow progression gives you plenty of time to learn to adapt - and you will adapt. Also don't worry if the experience is not what you expected - it's different for everyone. 3. When the time comes for sinemet, getting it dialed in can be a tricky endeavor. There are many formulations, schedules, interactions, etc. Be patient and you will get it right. 4. If your wife says "why are you mad at me" when you are perfectly happy and fine, you may have some facial masking going on. When you tell your wife she is going deaf, it's probably your voice . 5. Try to get in the habit now of keeping walkways clear of toys / junk (and if they already are, I am very jealous of you). It took me a while to realize just how much this was bothering me in my place with the kids. (not to mention that it becomes a hazard as well). that's all for now, I'm sure I'll think of more later Ed
  15. Hi everyone I've been lurking in the shadows here for a while and I have an exercise question that I can't find much of an answer for. First the question, then I'll give my background info for context. Everyone says exercise is a must for PD, yet I find that when I exercise, my symptoms get much worse for several hours, before returning to baseline. Though I recognize that in the long term it may help, it's hard to motivate myself to get off the couch when I know I will feel like heck after. This applies to any type of exercise, including just a busy day running errands etc. I have found that I can limit the impact slightly by being aggressive with my sinemet dosing, but I haven't found a good "formula" yet. My question is twofold - is this normal for people with PD, and if so, how do you manage the issue? Now my background. I'm 34, diagnosed 6 months ago, though I was suspicious of PD about a year before that. Much of that 1 yr delay was because my DAT came back normal and first neuro concluded it was likely just 'in my head'. Long story short I found another neruo, ironically not an MDS like my first one, and he made the diagnosis and started sinemet (due to problems with ICD's I can't be on the DA's nor Rasagiline, learned the hard way). Initially I was on 3 X 100/25 immediate daily, but symptom control was not great and it did not last long enough to get me from dose to dose. I also had some mild 'diphasic' type dyskinesias (so much for 5 years, I was dyskinesia free for 1 month . By 'mild' I mean it didn't keep me from doing anything but people would sometimes stare at me. Anyway my neuro upped the dose to 6 X 100/25 daily and after some experimenting I settled on the same dose but with a schedule of 4 X 1.5 pills instead of 6 X 1 pill. Currently my symptoms are well controlled through the day and dyskinesias nearly gone, though the evenings are a bit tough sometimes. But enough about me, what does exercise do for you (or to you ? -Ed