what are the issues of sinemet

[dal57]

what is ev1s experiences with sinemet.i take three 25/100 three xs a day .and then the extended ones at night 2/50 /200.i get really bad stomache aches .

[shall1019]

I had to stop taking it after 1 month because I got very high blood pressure.

[Hikoi]

Dal57

I'm not sure which country you are in so it is difficult to suggest where you may get support and information. Did i read right that you take 10 sinemet tablets a day? Are you under the care of a neurologist or just your GP? It is important the doctor you see has experience of treating people with PD as it is very complicated.

[JennyR in reply to Hikoi]

Good advice Hikoi. Unfortunately, many doctors (other than neurologists or movement specialists) don't have the time to be up-to-date with the latest drugs, exercise trends and the bedside manner to give some comfort to their PD patients.

I was blessed with a neurologist who is a God-send. As a result, after 6 years under his care, with major and minor drug adjustments, I can function almost normally, for which I am eternally grateful. Good luck to you in your quest for answers. Remember, we are always here to listen and help however we are able.

[alllowercase in reply to JennyR]

jenny

i know what you mean about bedside manner. the surgeon treating my bowel failure told me to make sure it was unrelated to my PD, then told me that the best offer he could make to me was to give myself an enema every 2 days. When i spoke to his boss a few weeks later, i said that i felt that his bedside manner was best suited to the mortuary.

[DeParkiePoet in reply to alllowercase]

Very well said. Mortuary forsooth! ha ha

It is vitally important that you stand up for yourself, be your own advocate. These Docs are so busy and self-involved that you have to demand their attention.

[Joyable in reply to JennyR]

Even some neurologists aren't up on PD. After my diagnosis over 6 yrs ago by an Internist, I looked for a neurologist with a great deal of expertise on PD. I tried one neurologist whose advice was at odds with medical literature I was studying. he told me it was too early to start an exercise program and also prescribed me way more Sinemet than I needed then - even more than I need now.

[JennyR in reply to Joyable]

There are good and poor medical professionals in every field. I was just very lucky in the end. My internist sent me to every specialist known to man! When I ended up in a cardiologist's office getting a full work-up, after I aced every test and he could find nothing wrong with me, he asked why I was in his office. I told him that my internist had thought I was not getting enough blood to my brain! He said my heart was so healthy he could not believe it for someone my age. I was 65 at the time. The cardiologist then added, that I needed to see a neurologist ASAP and should have been sent to one at least two years earlier. We walked across the hall and set up an appointment for the following day for consultation. This was on a Friday and after the consult with some preliminary testing i.e., walking down the hall unaided, squats - which I failed-, tapping each foot on the floor in time with the doctor, appointments were set up for nerve testing the following week. Following that, MRI's were done on my head, neck and torso. Then and only then, did the neurologist diagnose PD. I was begun immediately on Stalevo, which over a short period of time stopped me from swaying and falling. The rest is history. Over the last 6 years, meds have been adjusted as needed (he added Sinemet 25/100 1/2 tablet and Azilect 1 mg. each taken once a day). I don't pretend I am the way I was before all of this happened.I no longer drive, but that is to protect myself - my reaction time is not what it once was, and for that reason alone I decided to stop driving two years ago. Sorry to run on so. I hadn't meant to repeat my life story. But when I began typing I just couldn't stop. Much luck in finding someone competent to take care of you. God bless. Jenny

[Joyable in reply to JennyR]

Thanks for sharing. Shouldn't apologize for it. I think that's what most of us are here for. Know I really appreciate the chance to hear other PD stories. Helps me emotionally & information wise.

I was lucky to find a neurologist who specializes in PD at the National Parkinson Foundation at the Univ. of Miami. It's affiliated with the Miller School of Medicine & has a research lab so I feel comfortable that I'm getting cutting edge treatment. It's about an hour drive from my home but well worth it.

Course, a neurologist doesn't have to specialize in PD to have expertise in PD treatment. I had a neurologist closer to home who practiced general neurology. He was thorough & highly competent. I had as much confidence in him as I have in my present neurologist.

Sometimes it takes a whole lot of shopping & networking to find a quality doctor but they are out there for the finding. The search can be a real hassle but a well-equipped informed and diligent neurologist (and other doctors) can mean better quality of life throughout PD progression.

[dal57 in reply to Hikoi]

im from columbus ohio

[dal57 in reply to Hikoi]

i take 9 sinemet of 25/100.then i take two of the extended ones of 50/200.and im from columbus ohio,in america

[Hikoi]

Dal57

It is useful to work out how much LDopa (in sinemet) you get in 24 hours. There are 2 numbers in the drugs. The larger number is L Dopa. From the information you give you have 1300 mgs in 24 hours and you have been diagnosed 5 months. I have 400 mg after nearly 5 gears so you are on a very high dose. You need this reviewed. I suggest you contact the helpline at the National Parkinsons Foundation for advice about your treatment.

Here is the link

parkinson.org/helpline

[dal57 in reply to Hikoi]

tyvm for info

[PatV in reply to Hikoi]

I agree! I take mine with food because I have visceral off. It just sits in my stomach until I eat something.

[Pete-1]

It is very strange that Levodopa sometimes disagrees with some folk. It is after all only a natural substance and the other ingredient (Carbidopa) is expelled (inchanged) vai the urine within a handlul of hours

[Joyable]

I have taken Sinemet since my diagnosis 6 years ago. I have taken a larger dosage in the past; but now take one 25/100 three times a day like you. But I don't take extended ones at night. I don't take any other PD medication.

Sinemet was, most likely, the cause of some filmy type hazy hallucinations I had in darkened conditions soon after I started taking it.. But they didn't last more than a few months and haven't come back. Sinemet may also be what's causing occasional (sometimes frequent) vivid dreams although I may have had similar type dreams a few times in my pre-Sinemet life.

I do get stomach aches (not exactly nausea) along with a clammy cold sweat occasionally about 1/2 hour after taking Sinemet. It doesn't happen every time I take Sinemet. I'd say it happens about 1/4 the time & usually in the morning. Too bad we need to take it on an empty stomach because I'm more likely to experience symptoms when there is less food in my stomach at the time I take the Sinemet & suspect this is the case for others as well.

Don't think I have any other symptoms attributable to Sinemet. In my case, during the 6 yrs I have taken it, my symptoms have never been so severe that I considered going off of Sinemet. My vivid dreams are not nightmarish. Some are interesting & I enjoy trying to remember it all or would like to go back to sleep to finish the dream. When the tummy ache & sweat comes on, if I can, I just lay & relax under a fan & the symptoms subside within about 15 - 20 minutes, Hope some of my experience is helpful to you.

[JennyR]

Thanks for your input. It is always reassuring to hear that someone else is having success with the meds I am taking. The varying degrees of symptoms with each drug I take is quite interesting. More proof that all Parkies can't be placed in the same pigeon hole, thus making dx so difficult. I can't think of another disease (condition) with so many variables.