Levedopa has no effect

[Pat Macnaughton]

I don’t see any relief from symptoms either with levodopa. They work more like a sleeping pill. I only took one per day for a long time wanting to keep medicine intake low but have been advised to take 3 per day. Can’t firgure out if it helps or hinders? Usually take 2, sometimes 1. Doctor said to try taking none but I thought it better to try and take 3.

[Valuer]

There seems to be a few of us largely unaffected by levedopa and hopefully we don’t have the much worse PSP. I have been involved in a clinical trial using Symbyx head and hand held IR units with apparent success. Could it just be the placebo effect?

[buster14]

Diagnosed in 2017 I was prescribed the Neupro patch. All that did was irritate my skin.

Eventually I have taken most of the meds for PD. NOTHING made any difference.

I’ve been off any medicine at all for three years. No difference.

[Jenny]

I also get relatively little effect from CL. I always take a morning dose which maybe makes my feet feel a bit lighter but if I skip the rest of the day, I don’t feel much different. Because it gives me dyskinesia, for which I take amantadibe.

.I’m sort of in between stages 1 and 2. I am ambivalent about taking it while I am still functioning as well as I do.

[Valuer]

Thank you jenny99 for your response. Your experience with levedopa closely matches mine. Until my PD progresses I prefer to minimise levedopa use to avoid its side effects.

[Valuer]

Thank you buster14. It appears there is a small number of us for whom levedopa has little or no effect. It would be interesting to know why. My neurologist can offer no explanation.

Cheers

[owl]

I was diagnosed with PD in 2015, aged 75. No tremor but moving imbalance.I take STALEVO since then , actually 4 times a day, 100,75,100, 75gr. Until now , steady situation Thank G.od

[Barry Block]

I was diagnosed with PD in 2018 and have been taking it ever since. I started with sinemet ER three times daily. I now Take plain sinemet 4x daily and one sinemet ER at bedtime and one at 3AM when I get up to urinate. I’ve found it very beneficial energy and focus wise, but my tremors have increased over the years.

[neurodoc]

Stalevo who is levodopa with the comt enzyme is much more powerful since it helps levodopa reach the brain.High doses are recommended up to 800 mg as time progresses,unless we have dyskinesias

[John Wick]

I am 85, had PD sincs 2016! I take 1 Rytary 145 mg and 1 195 mg together every 4 hours, 4 times a day!. Definitely helps, when I don’t take resting tremor gets bad and my body misses it.

[dmcconnaughay]

My wife was diagnosed in 2020 at 65. She started seeing a neurologist who had her go to a physical therapist who was skilled with PD patients and at about 6 months later put her on Carbidopa/Levodopa (25/100) 3 times a day. We saw almost immediate results (positive). In early 2023 she started taking a extra half pill with her first dose in the morning (at the neurologist instructions) and in late 2023 the neurologist added a continuous release dose (50/200) at bedtime (in addition to the daytime doses). Each step of the way we have seen improvement.

Our neurologist is very cautious in adding medications and we now meet with her every 4 months and are very consistent in following her instructions.

We have learned from her that the Carbidopa is essential in getting the Levodopa into the brain. Interestingly she has always prescribed generic versions and is reluctant to use brand names due to studies showing increased side effects with some of them.

[Praba]

My husband John is on the Duodopa
Intestinal gel 20ml/mL Carbidopa monohydrate 5 mg/mL pump connected to him during the day for the last 2 and half years. Before that he had to take the medopar tablet every 4- 5 hours with up and down moments until the tablet took effect. But now with the pump doing a continuous job, life is much better. If he is exhausted after a walk or a family event then there is the option to press the extra dose button as required up to four times a day. It locks for an hour after you press the button so there is no way of over dosing. I cannot imagine his lie without the pump.

[Kathy Bettles]

Have you talked to your neuro about PSP? My husband told the doctor he didn’t feel any effects from Carbidopa and it led her to look at his eye movements. That led to the PSP diagnosis. Almost everyone with PSP was first diagnosed with Parkinson’s. Sad that many doctors don’t know about it. More folks have PSP than ALS.

The funny thing is I always saw beneficial effects when he took Carbidopa. It helps with his stability and reduces the masking that comes with PSP. They have come to find out that 10-15% of PSP sufferers do benefit. Us caregivers should always be believed! Anyway folks please ask your neuro about PSP. They are trying to get folks diagnosed earlier to see if you could benefit from upcoming trials and need more participants. For more information look at the CurePSP website.

Hanging in there one day at a time with hope for cures for all these diseases.

Kathy

[neurodoc]

Dear Kathy.PSP belongs to the former title of parkinson-plus syndromes.Its very rare and easily spotted by vertical eye movements disarray.In PSP levodopa does not work at all.After all these years and multiple metanalysis the most common form of atypical parkinsonian syndromes is multiple system atrophy or MSA.All organs collapse in time and the person is bedriden eventually.Death is by heart arrest

[Valuer]

Hello Kathy

Thanks for your suggestion, however, I know 2 people with PSP with rapidly advancing symptoms whereas I have very slow progression.

[alexander]

I was diagnosed in 2012 when I was 65 years old. This was after being misdiagnosed with essential tremor for three years. Sinemet was never very helpful, and I was an early candidate for DBS surgery in 2014. The DBS almost eliminated my tremor, but (of course) was not successful in controlling my non-motor symptoms. My neurologist has kept me using Sinemet (1 tab-2 or 3 times a day), thinking that I must have some dopamine deficiency. I wonder what is going on in my brain that is different from those brains where levodopa alters symptoms.

[Valuer]

There seems to be a few of us largely unaffected by levedopa. My PD symptoms do not warrant DBS at this stage but may be necessary in future.

[Jeanette Jagst]

Hi, if you’re on a very low dose that may be the problem. You may need more. On the other hand, if you have a higher dose and it doesn’t make any difference, maybe you don’t have Parkinson’s but one of the related conditions, as someone else has suggested. Your neurologist should be able to help you.

[Valuer]

Thanks Jeanette. I was initially prescribed a relatively high dose to the surprise of my GP but it seemed ineffective hence reducing dosage to almost nil. As I have been diagnosed for over 9 years I can rule out PSP. Perhaps I just have a very slow progressing PD.

Cheers

[thor]

I was diagnosed approximately 3 years ago. I take Carbadopa Levadopa with an extender Entacapone 200MG, 4 times a day, they work great. I can now do activities that I had not been able to do for several months do for several months.

[wesley greene]

I was diagnosed with Parkinson’s in 2018, I am now 73 and have never had any relief from carbidopa levodopa. I was taking 2 pills, 3 x’s / day. I recently increased the dosage to 10 pills /day and I still feel no effect. I have to set an alarm to remind me to take a dose but I often miss doses because I feel no effect from the pills. My neurologist has looked for the eye movement associated with PSP and, so far has not seen the up and down movement typical of PSP. For me this disease is a disease of my extremities, toes, fingers and tongue. My feet usually freeze whenever I stop and change direction, resulting in multiple falls/day, I cannot legibly write my name and my voice has become increasingly soft and garbled. The scariest part is, these symptoms seem to be progressing much faster over the last year. I am going to a diagnostic clinic with my neurologist in early December to, hope to finally figure out what is going on (never thought that I would hope for a Parkinson’s diagnosis!).

[Tom]

Similar symptoms. Would be interested in what your clinic results show. I’m now taking Amantadine twice a day for freezing of gait, but side effects are bothersome.

All the best to you.

[Wes Isenhart]

My date of diagnosis is March 25, 2014. I take 10mg of Sinemet 3 times a day. I still have tremors during the day, but no freezing of the gait to indicate it’s worn off so can’t say that it hasn’t been helpful. Marijuana doesn’t really do much for symptoms, but it puts your mind in the moment, so you tend to focus on what’s going on around you.

[Marjorie Weiss]

My husband has had good help with the freezing and falls through Physical therapy. Core strength had to be enhanced quite a bit. Also, a man in his Rock STeady boxing group has had great help for the soft voice using a Speechvive device. My husband is considering getting one. http://www.speechvive.com

speechvive.com

Speech aid for Parkinson’s patients | SpeechVive

The Parkinson’s speech device provides immediate speech volume and clarity improvement without additional therapy.

[olu]

i see very little results from c/l . take very little 2 tabs / day.

the other times i take natural supps.

: NAC, MSM, Mucuna, B3, Ltyrosine.

works ok. im able too get some reilef.

[Rick Tabakin]

Carbidopa/Levodopa works for me. 6 pills a day spread out over the day

[Trishy]

Hi! My husband, James, is 60 and was diagnosed with Parkinson’s in 2015. He doesn’t have tremors but has a terrible time with stiffness, rigidity, freezing, and pain.

He has used Zandopa for approximately 7 years.

He was taking C/L 25/100 every 2 hours, but he had very little on time, if any.

After research, we decided to try Zandopa. Zandopa has been a lifesaver for him (although the taste is horrible). Without it, I truly don’t even know if he would be alive.

James uses:

Zandopa Powder (we purchase on Amazon) every 1 1/2 – 2 hours. We had to experiment to find the right dose. We settled at .142 ounces of Zandopa.

I have a small kitchen scale that I weigh every single dose. I also have a small sifter that I sift the powder because it has hard little chunks in it (I don’t know what they are but they made swallowing the powder difficult).

I mix the Zandopa with cold water and James chugs it quickly. I found small cups on Amazon that don’t leak.

He also adds at the same time, 1/2 tablet of 25/100 C/L. This prevents the nauseousness from the L-dopa in the Zandopa and also seems to help in general with the extra Levodopa.

I know everyone is different and what works for one person doesn’t work for someone else. But this is what works for James.

Good luck!

[Valuer]

Thank you for suggesting Zandopa, I will give it a try

Cheers

[Marjorie Weiss]

My husband had almost no effect from carbodopa/levadopa and had terrible pain, stiffness and tremors. His neurologist put him on the highest dose that he had ever tried on anyone and it had absolutely no effect and the side effects were terrible. Hence, he got deep brain stimulation surgery which saved him. He had his first surgery in 2007 for his left brain and second surgery in 2009 for his right brain and still continues to have very good response. However, Parkinson’s marches on and has now messed with his balance. He’s had it for at least 25 years and is now 72.

[timbob1952]

I was diagnosed at age 70 in 2022. My main complaints are arm and face tremors, poor balance, constipation and painful muscle spasms. I also have familial essential tremor which was confirmed with a DAT scan.

Taking 2 C/L 25/100 three times a day at 5 hours apart with no noticeable effect. Been up to 9 a day without results except drowsiness. At this point, I can barely sign my name. I see there are several other meds that folks on this forum are taking. I plan to ask my doc about these next visit.

[trebor]

I was diagnosed in 2019 with PD at age 65. I have had little to no benefit from C/L from the outset. I switched neurologists last year and rediagnosed with PSP. My symptoms are principally gait, freezing and hand writing. I stilll take 5 pills per day and 3 Amantadine.. DBS is not the answer apparently and no real medications to improve the symptoms. A sad statement for our health system in my opinion.

I hoping one of the devices like Vibrotactile gloves or this new Beech Band comes to market soon.

[John Wick]

I was with a new PD doctor. He informed me that individuals with PD should see a skin doctor at least once a year as melanoma is very common.

I am trying to get a price on Crexor , a levodopa that lasts longer, made by Rytary which becomes a generic.

[mia]

I can only speak from my own experience, which I gained because of my grandmother’s health problem. It was not easy for her to find medicines at first, we tried a lot of things and it took us a long time to get used to the fact that we could not find anything good for her. But everything changed with the doctor’s advice to find the necessary medicines here Canadian Pharmacy Online https://www.canpharm.com/. Literally as soon as we started to find everything there, we saw what a great choice there really is and that there is still a chance to find the right medicine for grandma. And so it happened, now she is on good treatment, which we always find in one place.

[Lulu]

RE L-dopa HAVING NO EFFECT:

Could be a couple of reasons to check out:

1. Have you got Parkinson’s disease or another “Parkinsonism… because only Parkinson’s disease will respond dynamically to L-dopa therapy. Need to have a review with your neurologist to discuss about doing another assessment of your drug response and helpful too is a DAT scan to confirm diagnosis.

2. There are interactions with L-dopa and competition for its absorption (into the bloodstream and then into the brain) with the large neutral amino acids in dense protein food.

Therefore “precision monitoring” of the time of taking the L-dopa away from specific food groups, the amount of time it takes to have effect and the time it takes to wear off – is essential to judge if it is indeed having the desired effect or whether your personal doses and time of taking the L-dopa are correct for you personally.

Equally, good bowel function is essential so that the receptor sites in the intestine for L-dopa are not compromised.

I have published books on this subject of precision monitoring by patients to present to their neurologists. Only by monitoring responses at different doses as well as timing of doses, with the appropriate diet, can one know if the L-dopa formula is indeed appropriate or needs the neurologist’s review.

[empkae]

I took a combo of CL for 2 years. All I got was sick/nausea. I quit CL 5 months ago due to this sickness. I felt better within days of quitting CL and have never touched it again.

[John Wick]

I tried using a new c/l called Crexont! One pill compared to 2 pills of Rytary!! It was to strong, I was totally light headed and coudn’t drice. Back to the Rytary!!!