carbidopa, levodopa side effects

[MissRita]

Good morning all, can anyone talk at length or is there somewhere on the site that I can find the side effects of carbidopa levodopa? My doctor wants me to stop taking it because quite frankly, all it does is make my symptoms much much worse. Any comments would be greatly appreciated. Thanks so much.

[park_bear]

Carbidopa levodopa is strictly for symptom relief. If all does is make your symptoms worse your doctor is quite right you should stop taking it.

[MissRita in reply to park_bear]

Hi Park Bear. Yes, that’s what I’m trying to do. It’s just hard to wean off of it because my body seems to think it still needs it but in actuality, it makes everything much much worse. They put me on it in February 2021 (along with trying bunch of other medications, and none of them have worked and basically be exhausted the list) and I’ve only been on it for a little over a year and a half. Mind you when I started showing symptoms in 2015 I went completely medication free until February 2021. So we’re sort of back to the drawing board at this point about what this actually could be. So frustrating.

[park_bear in reply to MissRita]

What is it that leads you to believe your body thinks it still needs it?

[MissRita in reply to park_bear]

Well at times when I had taken it in the past, it would help some of the shakiness a lot quicker. Now when I have been taking it, I get more shakiness, stiffness, and curling of the toes when I take it. The crazy thing is I’m able to drive and go to work and do all these things I’m supposed to do. It’s almost as if my brain is gaslighting my body or vice versa. Lol.

[MissRita]

what exactly does that mean? Does that mean the levodopa carbidopa is too much for my system?

[park_bear in reply to MissRita]

You can safely ignore that comment.

If I understand you correctly you are saying it did help at one time but no longer? If there is no current benefit no reason to take it.

[MissRita in reply to park_bear]

I have used the extended version, and also the quick acting, and quite frankly none of them work like they were supposed to, in terms of being 100% affective. I’ve always had more symptoms when I first took them and it would take at least an hour sometimes two hours for it to actually work but overtime. I thought that was just normal. In the last couple of months like since July, the medication just doesn’t work and brings on the symptoms and it takes much longer to actually work. I’m really out of answers at this point in terms of medication because everything has to go through the gut and I have IBS, which makes it far more difficult. They’ve used every medication that is used for someone with PD and nothing has worked. I go back to Strong Memorial in six months and we shall see what they have to say.

[park_bear in reply to MissRita]

OK. The only thing I have to add at this point - I do not know what normal is for medication effectiveness, but in my experience, yes, it is a long way from 100%.

[MissRita in reply to park_bear]

agreed!

[enjoy2013]

Hello,

I remember you posting à while ago , you wondered if there was an interaction with food.

Did you try to spend a day or 2 eating just in the evening , fasting during the day?

it can help, I also discovered very recently that taking vitamin C as powder in some water helps.

on bad days, when there's a delay, even after taking sinemet on an empty stomach with vitamin c, I noticed that I need to eat a meal, mid-sized, to kind of push the tablet forward.

did you get some entacapone, or even better, opicapone? Amantadine?

[MissRita in reply to enjoy2013]

Hi,

I barely eat as it is. I’m being reevaluated for Gastroparesis currently. Any medication for that matter makes me shake and spasm as I believe this is gut related. I eat a lot of vegan broth from Owl Venice in California and it’s great and the shaking subsides for a bit but comes back after a while.

Because of my bowel issue, and not being able to eat a lot of course I have developed hemorrhoids, pudendal neuralgia and most likely levator ani along with fissures. The main issue and confusion is the fact that I shake more when I sit on the bum so now I’m resorting to starting to use suppositories with liquid cannabis on top of it to stop the shaking is is that’s where is stemming from.

The crazy part is I can still drive I can still go to work I can still go about my general normal business.

The whole thing is crazy.

[Furch in reply to enjoy2013]

are you taking any probiotic?

[MissRita in reply to Furch]

i’m starting to get back into doing that and I have to put it in water as I can’t take the capsule. I’m trying to do things from a foundational level.

[Furch in reply to MissRita]

well the reason I inquired concerning probiotic. Probiotic has good effect on the regularlarity of you bowels. Also there has-been some evidence of Probiotic particular to PS128 aka lactobacillus plantarum which shows a possible benefit to the central neurological system due to the gut/ brain approach. Again I am not an authority just sharing some reading.

[enjoy2013]

Dear Rita,

Thank you for sharing this.

Can you please tell me, where are you getting taken care of?

Are you in the UK?

In the meantime, I would like to make a few suggestions:

- you clearly need better medical care. If you live somewhere in the world where there are no MDS specialist? Can you point to the reason why you are in such a situationand not being takencare of? Depending on the country and your budget, there are ways to visit doctors out of your geography.

- Are you exercising? It may seem irrelevant, but in my experience with PD, when things get bad for one or the other reason, the best way, the most "universal" way to get better is exercise, 3 times a week 45 min (Powerforparkinsons.org, and the other days, a walk, meditation, yoga...

- I guess you lost quite some weight. Not good. You have to restart eating, and make sure your proteins are in the normal range.

I know you have interactions between ldopa and food but anyway you are not well. Just wait an hour after you took the ldopa before eating and if possible at least 3 hours after. I also take digestive enzymes and betaine citrate to help with digestion when my stomach is struggling

- Don't forget to drink enough water (not juice, not coffee, not broth just water), at least 1.5 litres. Dehydration is cause number 1 of constipation

- Restarting to eat may help with all the consequences of your constipation. But here again you need to be seen by a specialist. What you wrote tells me you may be medically manahed, or maybe are you a medical professional. But unless it's chronic, fissure plus hemorrhoids plus PD, too much to manage without a proctologist.

- For your constipation, you can get help using flaxseed or psylium. And mannitol too. True, I am a big fan. But mannitol is used by doctors and neurologists as a laxative.

And sleep!!

[Esperanto]

For me, too, the C/L stopped working and the dose had to be continually increased. You've probably already had the necessary tests, but perhaps you can look for an absorption problem due to vitamin deficiency. The B vitamins are essential for this. In particular, the interaction between B6 and carbidopa can cause problems. 🍀

[TinkerTod]

i have also stopped taking that medication as it did not help with my symptoms ! It gave me twisting writhing movements (Dystonia ? ) left side from my hip down to my toes , within half an hour of taking the med ….

[Artarnold]

My husband has switched to macuna pruriens as sinemet make him vomit quite often. It frequently gives him a kind of lock jaw which affects his jaw neck and shoulder. This makes it difficult to speak and causes involuntary movements. It can can be very upsetting and causes anxiety. He explained this to parkinsons nurse who felt he should accept the side effects.

[Ob6842 in reply to Artarnold]

Does he take mucuna without anything else? I have read that it takes some carbidopa to be effective. Is it really effective alone? What brand/dose does he take? I’m interested in mucuna, but don’t have any experience with it at all. I haven’t started CL yet…only on rasagiline so far.