Levodopa : How safe is Levodopa? I'm... - Cure Parkinson's

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Levodopa

Smittybear7 profile image

How safe is Levodopa?

I'm looking for a recent post on side effects of Levodopa?

What are the side effects?

What symptoms does it improve?

How many people in this group are taking Levodopa and have h ad positive results

Thanks for your help

42 Replies

Hi Smittybear 7. It’s so interesting that you just wrote this post just now as I have been struggling with levodopa since January of this year.

I was on Barlowe’s Mucuna from 2016 until January of this year, and I had to cut back on that because I was vomiting way too much.. My neurologist who diagnosed me in 2017 (started somewhat of a tremor in 2015) said it was time to get on levodopa. Mind you they’ve had me on all kinds of medications and I mean just about everything including the patch and so many medications in between and nothing has really helped me and actually has made my symptoms much worse and additionally has even made me physically sick outside of the symptoms that I’ve been experiencing. I have been on levodopa carbidopa controlled release and extended release and I can tell you that the controlled release made me feel so incredibly stoned and dysphoric and high all at the same time I could barely handle it. Therefore I have been on the extended release only.

I just had a two hour work up at Rochester’s Strong Memorial in August and the doctor there who has been treating patients with PD for many many years said that he believes I have been misdiagnosed as I am a person who takes very little medication and I should have far more reactive symptoms than the ones I showed in his office. Additionally, he said given that I had been diagnosed 4 (6) years ago, he would have expected me to be far more symptomatic and have far more issues with my gait, my strength, and all the other physical tests that he gave to me. Therefore, he did not find anything and it got him to thinking about what the tremors that I have are actually from. I don’t fall, I don’t thrash in bed, I can smell fine, I taste my food fine, I don’t have any plaque like issues on my skin, and I sleep like a rock. So interestingly enough, my original neurologist seemed to think that I had a very mild version of PD. I mean is that a thing? Does it really exist? The answer is who knows, because anywhere and everywhere that I have looked I’ve never seen any mild cases of it.

Now getting back to the levodopa. The day that I saw the neurologist in Rochester I took one levodopa (25/100) and one capsule of Barlowes Mucuna. He said once I go back to him in a few months and not be on any medication for at least a week before I see him he said then he’ll be able to make a true and more informed diagnosis.

The main point to my reply to you is I have found that levodopa has not been very good overall for me. It screws up my digestive system to the point where every time I would take at least one or say two tabs my stomach would become so distended and my blood pressure would rise and I would retain so much fluid I was like I was having a heart attack at the time. Additionally I have read that it can be a stimulant or have a mild stimulative affect on a persons body and I think my body has started to just plainly reject any high doses of it. Even if I take a whole tab it takes me at least an hour to calm the tremors down because it actually makes the tremors worse. At this point I have been taking half of the extended release and one capsule of the Barlowe’s Mucuna 1 to 2 times a day.

Granted I am no doctor but I try to stay as well informed as I possibly can and I’m sure levodopa works for most people but for me I have found that it has made this tremor and everything else along with it much worse. Do I have an essential tremor maybe, but I’m going to sure find out within the next few months because there is a gastro bowel issue that has gone along with this tremor that is so odd and interesting at the same time that the doctors don’t seem to know what’s causing the issue that I’m having in that area of the body. I believe it has something to do with the enteric nervous system as well as the vagus system.

Lastly the doctor in Rochester could not believe the physical shape that I am in because given the fact that I am a clinician myself and I work 50 to 60 hours a week, I have a personal trainer, I go to the gym, and I’m very active and I am not showing any signs in the slightest in terms of slowing down. The doctor really couldn’t believe it and couldn’t seem to understand how or why a person with a PD diagnosis for the last six years could be in the shape that I’m in. Again is it PD? We don’t know. So as of right now in terms of the levodopa it’s actually made things worse for me and I’m slowly taking less and less of it.

How about yourself? Are you on it and what’s going on for you with it?

Smittybear7 profile image
Smittybear7 in reply to MissRita

Diagnosed 2017 with Parkinsonism based on dragging of my right foot, slight tremor of my right hand and overall right side weakness. Come back in year, call if you need to .MRI of the brain did not show a stroke .I think I had a passing stroke. My nutritionist/pharmacist, chiropractor and muscle therapist felt the same. I continued working with that group and muscle tested for supplements.in addition I began working with an integrative medicine dr.who is a medical dr, chiropractor, acupuncturists and nutritionist. He thought pd.i added additional supplements and had about 24 IVS of glutathione and acupuncture treatments for stress and tremors. It became cost prohibitive so I just continued with the nutritionist/pharmacist, chiropractor and muscle therapist. Everything stayed pretty much the same for awhile .I had difficulty getting out of my car because of the right side weakness but kept on going. I continued to complain about the right side weakness to my pcp and neurologist and the others I was working with. I got temporary relief from chiropractor and muscle therapy. The cramping in my quadriceps began to become worse and extremely painful and I had difficulty getting in and out of bed, on and off of the toilet and out of chairs. My chiropractor suggested I get a MRI of my hip to look for a tear. Or fracture. Hip MRI shows osteoarthritis and frayed muscle. I then had a MRI of the lumbar spine shows osteoarthritis,bone spur L4-L5 pressing on a nerve. Shoulder and hand xrays showed osteoarthritis. Dr wants me to get an epidural in my back. I'm scheduled for a nerve conduction test and an appointment with a pain specialist. I also started PT/OT. I spend my days mostly standing or laying down because sitting for any time results in quadriceps cramping and cramping in my big toe and foot. I eat standing up. I see my neurologist in October and a movement specialist in December. No one can pinpoint the problem but feel it's movement disorders and I should be on medication and have another MRI of the brain. The medication suggested hs been Levodopa. When I read about the side effects it scares me. That's why I posed the question. Sounds like you have been thru a lot. Thanks for your response. Keep in touch and good luck to you. I hope that you get some help.

MissRita profile image
MissRita in reply to Smittybear7

Thank you so much! The thing that I’ve learned with every medication for any type of issue is that you could have 10 people in the room and they’re all taking the same medication but each person in the room is going to have different and completely opposite side effects. The only way you’ll know is if you try it.

Smittybear7 profile image
Smittybear7 in reply to MissRita

Thanks I'm just scared. Haven't had any meds not even an aspirin since 1993.iv been very healthy retired with 210 unused sick days and now this. I thank God for the good years and pray for everyone facing problems today. I think stress has a lot to do with my problems

Mirl profile image
Mirl in reply to Smittybear7

Ik bedoel dat zou ook een verklaring kunnen zijn als medicijnen niet aanslaan. Bij Mijn partner slaan medicijen ook niet aan.

Hikoi profile image
Hikoi in reply to Smittybear7

Smitty seems you havent had success either in treating or reversing your PD following the path you have, just spent alot of money. What you write about are obvious PD related problems to me and will only be resolved with what your body needs which is dopamine. If you were a type 1 diabetic I doubt you would not take insulin, or if you had your thyroid removed would you refuse to take thyroid replacement therapy. How is taking levadopa any different? Already your body is down to 30% or less of the dopamine that it needs?You will read all the horror stories on here, the successes are quieter but a drug that has been used 50 years and is never in the news for causing problems or being sued. Must have something going for it.

Mirl profile image
Mirl in reply to MissRita

Hallo, in Nederland is er een association for unexplained functional neurological disorder voor mensen die niet helmaal passen in de standaard diagnoses voor parkinsons and so. Het heet FNS , dat zal ook vast in andere landen zijn.

MissRita profile image
MissRita in reply to Mirl

Hi I would love to be able to know what you said in English! Can you translate?

Mirl profile image
Mirl in reply to MissRita

I’m sorry, i thought that the translation would done automaticly. I’ll send it again

Mirl profile image
Mirl in reply to MissRita

Hello, in the Netherlands there is an association for unexplained functional neurological disease for people who are not fully a passenger in the standard diagnoses for Parkinson's and such. It's called FNS , which will probably be in other countries too.

MissRita profile image
MissRita in reply to Mirl

Now it is thanks!

Hikoi profile image
Hikoi in reply to MissRita

There is a functional neurology forum on here, on health unlocked.

MissRita profile image
MissRita in reply to Hikoi

Thx!

Mirl profile image
Mirl in reply to MissRita

Is it readable?

Several successful years.

Smittybear7 profile image
Smittybear7 in reply to RoyProp

Thanks for sharing

Hi. I've been on Carbidopa/Levodopa for approximately 9-10 yrs out of 18 and it has been a huge help to me with very little side effects, if any. The only advice I would give is start on a low dose and try to keep it as low as possible. If you eat healthy, try supplements and consistently do intense forced exercise, it will allow you to do that. I have been doing rocksteadyboxing.org for nearly 15 yrs. and iI has helped me and many others around the world. I don't have a lot of advice on what to recommend on supplements. That is something you just need to experiment with and do research on. This cite has a lot of good advice on what helps and what doesn't. But, you'll find everyone is different and there is not one perfect answer. To some degree you need to check with your doctor and judge for yourself if these things are safe or not. Doctors sometimes aren't aware of some of the supplements that are being experimented with and can only approve things that are certified for Parkinson's. I haven't tried it for very long because it seemed to make my tremors worse, but high dose B1 has helped a lot of PwP's (Person's with Parkinson's). Take care and keep fighting! 🥊🥊

Smittybear7 profile image
Smittybear7 in reply to laglag

Thanks for sharing I take omega 3d, co Q10,alpho lipolic acid, NAC,DHA, d3,turmeric, dopa plus by pure encapsulation, all in one organic liquid multivitamin and mineral and amino acids, b1 1000mg, magnesium complex, calcium and super probiotic. I'm working with a nutritionist/pharmacist who muscle tested me for those supplements and thinks I have a neuromuscular condition not pd.i am seeing several specialist. Most of them say movement disorders and I should use medication. No one can tell me what is wrong. For the cramping and right side weakness they want me to get an epidural and go on medication for pd. Levodopa is what they think the neurologist will prescribe. I'm looking in to rock steady boxing but my right side and coordination are extremely weak. I had been playing pickle ball but had to quit. I'm also taking vitamin c and am going to start arthritis factors for my osteoarthritis. Thanks for your information. Good luck to you. I. Appreciate your help.

@

You’re getting a small dose of l-dopa from the Dopa plus (depending on how much you are taking), so if you decide to try a prescription version you might want to discontinue the dopa plus.

That is what the nutritionist/pharmacist said also. He said I can continue with all of the rest of the supplements except dopa plus. Thanks for your help

If levodopa remedies the right side weakness that is strong evidence it is Parkinson's.

Thanks for sharing

Hikoi profile image
Hikoi in reply to Smittybear7

A neuro muscular disorder, isnt that one description of PD? What experience with PD does your nutritionist /pharmacist have. I take it he is more qualified and experienced than your neuro or doctor otherwise there must be some other reason you have such faith in him.

Carbidopa levodopa ER works for me. The only caution I have to express is that dosage must be adjusted carefully because too much can have similar effects as too little.

Thanks for sharing. What is the best way to take it?

What is Levodopa ER?

Extended release. See here for details:

healthunlocked.com/cure-par...

What is ER?

Extended release

Did you find the glutathione and the acupuncture worked?

Smittybear7 profile image
Smittybear7 in reply to MissRita

I think it helps. I saw Improvement but couldn't afford to continue. Alpha lipoic acid and NAC make glutathione so that is why I use them. Not as good as the IVS but cheaper.

Read this:

nature.com/articles/s41531-...

Levodopa Phobia

“dopamine agonists were favoured over levodopa because of data suggesting a ‘toxic’ effect of levodopa on nigral neuronal cell cultures, although clear evidence of levodopa toxicity in humans are lacking.6,7 Aggressive marketing of this concept by pharmaceutical companies, as well as neurologists and geriatricians, particularly in the learly 2000 period, have led to many patients with PD to either reject the option of using levodopa even when it is clearly clinically indicated or develop a ‘fear’ about the use of levodopa.”

nature.com/articles/s41531-...

MissRita profile image
MissRita in reply to RoyProp

Thanks for this!

Smittybear7 profile image
Smittybear7 in reply to RoyProp

Thanks for sharing

Hi MissRita. I have been on madopar only since february. I started taking it with mucuna from brittish supplements. Big mistake! They were too much together. Now i take one madopar in the morning as it helps to activate the mucuna that i take 4/5 hours later. It alleviates the tremor a bit...nothing major. In fact the mucuna i find more helpful especially if i take a green tea with it. It helps me doing my fast walking. Stress and nervousness agravate everything even with medicines. Exercise helps....hope you get well.

Dx nov 2019 right side tremor predominately. After diagnosis tremor went from a 1 to a 10. The anxiety exasperated it. I went on L/C 100/25 3 x a day starting with ¼ then ½ dose for weeks. Even at those small doses I got extremely nauseated. I didn’t have any other symptoms but it took months to get up to a full dose and to feel well. The meds control my tremor and there are days when I don’t even have one. I take multiple supplements as well. Everyone is different but I think nausea is the worst side effect with L/C

Thanks for sharing

Hi been on Sinemet for 5 years now and it has greatly improved my motor functions, however my non motor not so great such as memory , night terrors. But when I look back at myself pre levadopa I can honestly say that it has been a Godsend for me.

Thanks for sharing! Good luck to you! Do you have the night terrors every night?

I tried Macuna and different supplements for several years with no significant improvement. Started C/L about year ago. Slowly noticed improvement over months. Motor and non motor symptoms are greatly improved now. If I could get those two years back I would have started on the C/L much earlier.

Thanks for sharing. Wishing you continued success .Hope I get similar results.

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