Sinemet not as effective in afternoon

[jcavana]

My mom has been taking sinemet (25/100) 4 times a day for 2 years. She also takes one pill of Azilect. She gets up early like 4:30 so her first sinemet dose is around 5 am. When we saw the doctor last Friday she told him how she fades in afternoon. He recommended switching to rytary. He told her to try 2 pills 3 times (95 dose) for two days then increase to 3 pills at a time then to 3 pills 4 times a day. It has been a rough week. Her anxiety became much worse and her confidence tanked which only made Parkinsons symptoms worse plus her legs were shaky and weak due to increased anxiety. So we made the call to go back to sinemet last night. We see doc tomorrow.

I wonder if adding a half a pill more of sinemet would have been better then switching drugs completely.

Anyone else experience something similar?

[park_bear]

Given the results, I would say yes. Levodopa medications are for symptomatic relief, so whatever relieves symptoms best is the way to go.

[parkie13]

Her original sinemet dose was low. If she was tolerating well her original medication there's going to be no problem increasing it. You also might want to add some citicoline, it seems like it extends and augments sinemet. Also she could try Carbidopa / levodopa ER which is extended release and evens out the ups and the downs. Carbidopa / levodopa ER has nothing to do with Rytary. It is a generic and works really well.

[hanifag in reply to parkie13]

Please tell me how the Azilect helped her my doc wants me to take it I am so hesitant

[jcavana in reply to hanifag]

My mom really likes it. She says it gives her more energy. She did not have any side effects when switching to it. She takes sinemet 4 times a day. She usually takes her azilect pill with her second sinement does; however, the doctor said she could move it around depending on when she is most active in the day. I know this drug helps sinement be more effective.

[parkie13 in reply to hanifag]

I don't take azilect, myself I had a bad reaction to it.

[jcavana in reply to parkie13]

Thanks

[parkie13 in reply to jcavana]

Also, have you try thiamine HCL for your mom?

[jcavana in reply to parkie13]

No but I am curious about it - did you talk to your neurologist about it or make decision to take in your own? Also how much do you take?

[parkie13 in reply to jcavana]

I got a feeling that you will have to educate your neurologist about thiamine HCL. You can start your mom on thiamine HCL 500mg a day with magnesium capsule. The best time to give it to her is in the morning, you can add another 500 milligram capsule at lunch. With magnesium. Magnesium glycinate is a all around good form of magnesium.

[parkie13 in reply to jcavana]

Dr. Costantini is in Italy and he is treating Mediterranean people. I think what finally came through is that people of Mediterranean descent can take a lot more of thiamine HCL than other groups of people. After the initial high doses I'm taking a small dose now. My side effect was very high blood pressure, from reading about other people experiences on this list it seems to me they get body pain, joint pain, that's how they decide if they are getting too much. Also some of them become agitated and they cannot sleep. Your mom should be able to tolerate thousand or 1500 milligrams for a while there's a lot of information on this site you can do a search. I take 500 milligrams a day once in awhile ,I take a hundred milligrams a day, some days I don't take any Mary

[Kwinholt]

Hi there. I take 6 cd/ld 25/100 a day , Azilect in the morning with my morning dose. I am prescribed to take 2 cd/ld 3x a day . I take 2 for my fist dose at 4:15-5 am with my Azilect and then my next 2 pills I break in half and take starting at 10 and then take 1/2 every 2 hours with Comtan , and then take my normal dose at night at 8:00pm. The reason I break them in half during the day is because a full dose (2 pills) I get so tired and I work full time and can’t have that. My dr has no problem with me doing that and on days where I run a lot of miles I add another 1/2 pill because I burn it off. This seems to work for me and would be afraid to change anything . Hope this helps . K

[6780]

i honestly don't know about azilect. i take 1 a day. i take sinemet 3x a day and on busy days i feel i could use an extra sinemet pill. it seems anything that requires anything more than low key stay in apartment days i could use more. i am taking pd dance exercise for parkinsons and i think that helps me. motion = emotion so anything like the dance for pd program might help. i am in nyc but many cities have this program and others on this chat recommend all exercise as helpful. PD is more an art than a science. try things at least 30 days. keep a journal as a help in figuring out what works best.

[lockington2]

My only PD symptom is that my energy levels are limited. I exercise by walking 7 k 3 times a week and golf at least once per week - I am following John Pepper's various posts re exercise and Azilect. I take 1 azilect a day (evening) and have no way of knowing whether this helps my energy levels at all

[JohnPepper]

Are you aware that no Pd medication does anything to slow down the progression of Pd? If you want to start getting better then look at my website - reverseparkinsons,net and contact me. I have been able to overcome most of my more debilitating symptoms and have been medication-free since 2002. Contact me and I will try to help you, at no cost to yourself.

[Sydney75 in reply to JohnPepper]

Well John the DaTscan did not exist in 2002 only approved by FDA in 2011. It empirically diagnoses PD. It is possible you were misdiagnosed as PD was largely diagnosed by symptoms. While walking is great, there are people who are physically unable to walk quickly. It is wonderful that you have been so successful in your self-treatment; others are not so lucky as they may have physically limitations unrelated to PD.

[JohnPepper in reply to Sydney75]

Yes! I am fully aware of this and thank you for reminding me about it. Other than saying that not everybody can walk, and not everybody can walk fast, but whatever speed we can walk at, is what we need to do!I have been told that even the DatScan is not 100% accurate.

[Parkinsonjisung in reply to JohnPepper]

John, why don't you offer your book for free to parkinson patients?

[JohnPepper in reply to Parkinsonjisung]

Simple! I don't have a pension, but I have to live on my savings. It costs money to print and deliver books. I give away around 20% of what I deliver in my own country, but only when I am able to confirm that the patient cannot afford it. Postal and courier charges are quite high,

I have donated many books overseas in the past but have not done so during the past couple of years. which makes it that much more difficult for me.

[Parkinsonjisung in reply to JohnPepper]

It just undermines your point if the summary is: "to find out more, buy my book." If you truly believe that you have found a cure, then create a pdf and upload it for free. Its free to do and little effort. Doing anything else means, you're just a salesman.

[JohnPepper in reply to Parkinsonjisung]

The money I make on those book sales, as small as it is, helps me to travel to talk to patients and carers. I never charge anybody who needs my help!My book is continually updated with the latest information.

I am 86 and I cannot possibly keep up with what can be done electronically.

Patients constantly refer to my book and some businesses have a copy in their waiting rooms, which often get borrowed.