Side effects from Leva/carba: Hi New to... - Cure Parkinson's

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Side effects from Leva/carba

Fb41445 profile image
32 Replies

Hi

New to this site having been diagnosed in 2013 but showing symptoms a few years earlier. I had broken my wrist and after it healed noticed tremor whichi thought was nerve related. I've managed to keep my PD at bay by going to the gym (reluctantly) and playing a lot of tennis play in winter and summer leagues.

Lately I've noticed that my strength has weakened considerably not able to hit the ball hard and with pace. My movement has been ok but noticed my peripheral vision has changed. Gradually my tennis is getting worse. Ive reached a point where I don't play much at all! People are noticing a significant difference in my shots and I chose not to let them know that it's PD. Th is such a huge disappointment for me since I'm so passionate about the sport. This is my livelihood and over the years have built up a community of friends who are as passionate about the game but that's another story.

I've mentioned these symptoms to my movement neurologist and she suggested I start Sinomet 25 mg 1/2 tablet 3 x day. I tried it for two days and felt nauseous and my head was fuzzy all day. I occasionally saw objects that weren't there and was literally on the couch for most of the two days. I did not see an improvement with my stretch and thought I'd see a difference in my gait. My balance seemed to get worse instead of better I was told improvements would happen as soon as a few doses were taken.In fact On occasionally experienced twitching and leg dragging which I've only had on a few occasions in the past. I realize at some point I have to start taking this drug but feel it's not worth taking now given that I get so sick. I'm curious to know if others have experienced these symptoms when taking Sinemet? How soon does it kick in? Does it improve strength? Im currently taking seligiline twice a day with amantadine 3:day along with Premapexole 5 tablets 3 times A day. Thanks for your input.

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32 Replies
park_bear profile image
park_bear

I take it the other PD meds you mentioned are clearly helping and there is no question regarding your PD diagnosis. Sinemet kicked in immediately for me and immediately made symptoms better. Also in my experience the controlled release "CR" version is far better than the default immediate release version. If you have the latter insist on the CR which provides a steady flow of levodopa instead of boom and bust.

jenniferdunstan profile image
jenniferdunstan in reply to park_bear

What is the difference between CR and Extended Release, do you happen to know? I take the immediate Sinemet plus Extended Release Sinemet. I think I'm getting too much between the two and will discuss this with my neuro tomorrow.

park_bear profile image
park_bear in reply to jenniferdunstan

As far as I can tell the terms are all used interchangeably: controlled-release, extended release, even sustained-release I have seen used together in a paragraph or product label to refer to the same thing.

jenniferdunstan profile image
jenniferdunstan in reply to park_bear

Thanks for such a quick reply. Now, I'm going to ask my neuro whether or not Amantadine is the culprit in making my skin so splotchy all over my legs, swollen ankles and feet, fat fingers. It came on suddenly a few weeks ago and isn't going to go away as I'd hoped. Has anyone else experienced these symptoms?

Shakinginnc profile image
Shakinginnc in reply to jenniferdunstan

It is definitely the Amantadine ! It effected me the same way, I am now weening off it and still have residual swelling in my ankles and feet and red spots on legs😒

S70AWD profile image
S70AWD in reply to jenniferdunstan

It improves if I stop taking the drug, but my symptoms increase, so I stay with it. I have the splotchy legs and swollen ankles from 4 years of amantadine.

Hikoi profile image
Hikoi

FB can you clarify your drug dose - sinemet 25mg.? Thats an unusual dose. Mabe it was 100/25 or 200//50 ?

All those meds you are on contributed to this adverse experience. I dont think you can blame the sinemet alone, i suspect the overall effect was too much.

I take those meds (dffferent agonist) and there are lots of potental interactions. Amantadine is well known for hallucinations, gives me them so i take only one a day.

Overall Sinemet is much better tolerated than some of the meds you take and it is the most effective for movement. You may need to decrease some of your other meds if you want to add sinemet.

BUZZ1397 profile image
BUZZ1397 in reply to Hikoi

Sounds like you suspect over medication, I do too.

Barbthorn profile image
Barbthorn in reply to BUZZ1397

Are you seeing a Neurologist with a specialty in Movement Disorder?

aunt-Jamibjob profile image
aunt-Jamibjob in reply to Barbthorn

yes

Fb41445 profile image
Fb41445 in reply to Hikoi

What you're saying makes sense. Most likely too many mds. I will mention it to my MD specialist.

Thank you.

Fb41445 profile image
Fb41445 in reply to Hikoi

That makes sense. I started with 1/2 tab of 25/100 3 x day. I reduce my seligiline down to 1/day and take Amantadine twice a day. I noticed with Amantadine it caused 'marbelling ' of my skin where it looks spotty. Sounds like I should start witha1/4 tab and work my way up tithe full 25:100 tablet and MD said eventually I could eliminate the others.

Hikoi profile image
Hikoi in reply to Fb41445

FB

I think you have a bit of a dilema which may take a while to resolve.

The advice generallt that i have been given and that i know from 10 yrs with pd is to do any changes little and slow and one at a time. Lots of reasons but mostly so you can find which is causing what. However for you i can understand that you may change a number of meds at once. Can i suggest you give it a few weeks for things to settle before deciding it is or isnt working.

For instance: i forgot my selegiline when i went on vacation. ( i take one tab a day). For the first couple of weeks all was fine but by week four i was really noticing it. My science isnt that great but as i understand it Selegiline is absorbed in our fat tissue so it stays much longer in the body than some others.

Also while the md says you could eventually eliminate all others in the future this is a possibility but they are all different types of meds so certainly one is not interchangable with another. I would want to do that one at a time.

Hope this is helpful. This is the link to some more general info about meds

healthunlocked.com/parkinso....

racerCP profile image
racerCP in reply to Hikoi

25-100 is correct and the tablet I take. I have also been diagnosed in 2013 and started meds this year and have similar reaction to the LD/CD. I take one tablet Selegiline a day and 1/2 of a 25-100. I don't see any real effect except the LD/CD makes brings on nausea and dizziness so I only take 1/2 a tablet a day in the morning about 2 hours after breakfast.

aunt-Jamibjob profile image
aunt-Jamibjob in reply to Hikoi

I was diagnosed as having Parkinson's in 2002 I had a tremor on left side of my body and I having problems walking The main problem being I was losing my strength especially in my legs therefore I stumbled and fell quite often.the neurologist put me on sinemet and reequip and I started feel intoxicated all the time (this is where I ho start being be blunt I'm sorry) the neurologist blamed it on the reequip and increased the sinemet i felt even more intoxicated and i told him so he said i had a choice either feel drunk or stiff now the drunk state started taking on its own trates I started to get urges to cross dress and also i wanted to be honest with my wife of 48 years so I told her now she doe n't understand so she has me committed the physicists ask me if I have any attractions to men or curiosity and goofed up and told her about my weird dream of cross dressing as a blonde slut and deep throating a black man with a very large penis is this side affects or have I turned gay>

Hikoi profile image
Hikoi in reply to aunt-Jamibjob

Aunt-jamibjob

Can I suggest you start another thread with this post because it is getting confusing on this thread. You may get more responses too.

grower profile image
grower

I had a bad reaction (nausea, extreme fatigue) when I started sinemet too, my initial Dr started me on a whole pill TID but in the end I got through it starting on 1/4 of 25/100 TID and gradually working up over the weeks.

Fb41445 profile image
Fb41445 in reply to grower

Starting off slowly as you sugg

grower profile image
grower in reply to Fb41445

Good luck, I Stayed on each dose stage for a week, increasing by a 1/4. It's not a race...

Fb41445 profile image
Fb41445 in reply to grower

That's exactly what I'm doing and already feel better. My Neurologist says it's ok to eat before I take the pills for now, which helps the nausea

grower profile image
grower in reply to Fb41445

Grat. I find the mornings the worst. If I have my first sinemet before breakfast I'm throwing up and then on the couch for 30 mins or so feeling terrible before I get over it. Strong stuff

Penelope68 profile image
Penelope68

I'm about 7 years into the PD journey. I started on Sinemet about 4 years ago. She added Mirapax about six months later. Both helped tremendously but I believe I gradually increased the dose up to 3 1/2 pills (25/100) and it took some weeks to get the full. benefit. Nausea can occur if you eat protein too close to taking the Sinemet. It also can have an effect on absorption of the Sinemet. I also take Amantadine 3xday which helps my tremor. I remain in Stage 1 and am grateful for the slow progression. The drugs I'm taking are a God send and I haven't had side effects. I'd give it a ittle more time. Good luck .

sasnak123 profile image
sasnak123 in reply to Penelope68

Did you have any problems with the mirapex? Gambling, excessive shopping?

Penelope68 profile image
Penelope68 in reply to sasnak123

No problems with impulse control but I think the Amantadine may be causing swelling in my legs. I need to have my back worked on so I can exercise more. I would like to take fewer meds but I am doing pretty good with what I take now so I hate to mess with them.

Nivrac77 profile image
Nivrac77

Like "Grower" I had to significantly reduce the dose and gradually work up to full pill. Started with 1/4 pill and slowly over a period of a month added 1/4 pill each week until my body could tolerate it. My initial reaction to Sinamet was fatigue, nausea, and general malaise. I have a good friend who when he started Sinamet had no adverse reactions at all. Once again, every person is different-in symptoms, and even in reactions to various Meds.

racerCP profile image
racerCP

I have the same reaction.

DianeF profile image
DianeF

I tried Sinemet twice and had the same reaction both times. My neurologist said that in 20 years of treating people diagnosed with Parkinson's he had never treated anyone who couldn't tolerate Sinemet(there was no doubt I have Parkinson's.) He told me to take it with meals or crackers. I was becoming depressed as my stiffness and slowness were very obvious. I finally read about someone on this site who took Sinemet before meals. I tried it as a last resort. Voila!The nausea and dizziness disappeared. Now I take the extended release three times a day, always at least an hour before I eat. Initially I did have a headache afterwards initially but it that seemed to leave after about a month. My symptoms improved drastically almost immediately. Everyone is so different.

Cbgs profile image
Cbgs

FB41445

I'm sry you're having a hard time

I'm also shocked you're taking that much Amantadine & Pramipexol

I've read the following may be better suited for you ( in place of the Sinemet)

stalevo,entacapone,madopar

If you have time, pls watch the following video

youtu.be/utVZaOLUiDo

I hope this helps

Good luck

Be well

C!

Fb41445 profile image
Fb41445 in reply to Cbgs

Thx so much for sending this informative video! So glad I found this website. Up until now I had the impression that Levadopa was s bad drug, that once you get off it, it caused diskynsia, has a strick dosage timing and you eat minimal protein.

BUZZ1397 profile image
BUZZ1397

After your fracture healed, and you suspected a tremor was nerve related, did you have a nerve conductivity test? Better late than never, if not.

Fava-1 profile image
Fava-1

most people see amazing improvement after first dose of sinemet if it is going to help. See if you can take mucuna puriens to see if the natural ldopa works better for you or ask your dr about fava beans

JohnPepper profile image
JohnPepper

I am not in favor of levodopa medication, even though there are many who swear by it. There are possibly many who swear at it, but that is by the bye.

I took selegiline for 8 years, at which point I was able to stop taking it, because I had managed to overcome most of my Pd symptoms. I still have Pd but at such a low level that I don't need any medication. How did I do this? I started to do fast walking, two years after diagnosis, and together with the selegiline, the fast walking reversed many of my symptoms. I learned to take conscious control of my movements, mainly the walking and bringing food to my mouth and writing.

Have a look at my profile and maybe you can also benefit from what I have managed to do.

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