Response to the question of whether or not to start taking SINEMET.....
I was diagnosed for 2 years before I started taking SINEMET.
I got to the point where my husband had to help me do almost everything. SINEMET changed my life so completely in a matter of 3 days. I have been taking SINEMET and Azilect for 2 years now and I take a lot of supplements my doctor has recommended . I can walk normally, my voice is louder, I can get up from a chair without any problem, my facial expressions are normal again and I praise God for giving man the ability to develop such a great medication. Oh, and I have great energy as a result of the supplements.
I take Carb-Levo 5x/day and have no side effects. I am blessed.
Written by
Prayergirl
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These are just my opinions and not directed at any one.
I think most people go through first denial, then anger, why me and then fuck this and do some thing about it. Before you say not to use that word think of the context it is use in.
Pwp who try to put off meds for any reason just suffer years of torment and pain for future years that may or may not come. I believe the ones that put off meds are a small but vocal minority and most are in the denial stage. Live for today for tomorrow we may die.
For your sake and your family every one please try Rx meds a least once you will not regret it.
I respect every ones opinion and what they believe.
Thank you Bailey and Prayergirl. I wonder how many of us DO end up after a few years on Sinemet with the irrevocable dyskinesia we have been warned about? Is it as inevitable as "everyone" says? Does it depend on your age at time of dx and going on meds, or your condition or stage of PD? What are the variables? No one knows! There are so many variables. Mucuna didn't work for me but it seems to help lots of others. But again how long before that changes too? We all need to be doing what is comfortable for our own state of mind and ...and body.
All the variables you mention may be significant . We know It is less likely to occur when a person develops PD later in life. 10 - 20% of people on l dopa never get dyskinesia, it isn't totally clear how it develops but it seems fluctuating levels of ldopa and high levels of ldopa increase the risk. The type of PD too is probably very significant
This is an older article but it covers many possible factors
Thank you Hikoi. The 2001 article you connected me with is interesting and very informative. I will be using some of the information when I visit my neurologist in June. I wonder if she can offer additional and more current data.
Useful article to have by but a bit technical for me. From the article "Since levodopa-induced dyskinesia is difficult to reverse once it is established, it is preferable to attempt to prevent it. "
I had mentioned this to my neuro as I had read it elsewhere and he did not think it was so but it makes sense to me that once established and the body has learned these movements they would be more easily triggered off. I have dyskinetic squirming from time to time and will discuss this with the PD nurse when I see her next month I was persuaded to overcome my fear of dopamine agonists because of the onset of dyskinetic type movements and since going on 24 hour patches (neuropatch Rogotine) the threat of dyskinesia has receded but not gone entirely.
I believe help with avoiding dyskinesia produced by Sinemet is a possibility. Ref (In vivo protective effect of Uridine, a pyrimidine nucleoside, on genotoxicity induced by Levodopa/Carbidopa .
I was diagnosed 4 years ago and though the Sinemet still works great for me, the cramping in my leg has increased greatly In frequency . I found that Benadryl helps with that only if I take it after the cramping has already turns into real pain. It doesn't work for me if I take it too soon .
That's what I've told my neuro since diagnosed 7 years ago. Quality of life not quantity. I don't want to spend my time here disabled if I can help it.
I am working on quality of life now not the future. The future does not exist for me. Suffering with PD for years to maybe have some unknown better years is foolish. By that time they could have a cure. If not then i will of had good years to reflect on.
I am 10 yrs DX
am in better shape now than then. With meds i have no symptoms.
I take 5 50/200 ex release and 5 25/100 C/L 1 azilex and 1 6 mg requip a day.
I have been taking ! mg Azilect (Rasageline as soon as it became available) for a bit over 2 years bow. I confess to being a chronically sub wealthy foodie, with a somewhat reduced stomach capacity.
Since onset of severe symptoms and subsequent repair of a major hiatal hernia, I am no longer a regular at "Troughs" or "all you can eat buffets". I freely admit though, that if I avoid the chicken and Lamb, I can have a great time with the veggies portions of an Indian restaurant buffet.
That digression does speak to my point however. I am a Skilled,curious and adventurous cook and diner. And I am also an inquisitive and inventive cook.
Bottom line , in my experience. Don't pig out , keep portions reasonable. and the odds seem OK in my experience.
( I have eaten Gorgonzola, Fava beans , fermented tofu, miso , brewers yeast , and drunk a number of small glasses of craft various brewed draft beers , and still. Here I am . Annoying as ever !
How fortunate you are!! I am very curious about supplements you take. I take Carb/Levo 25/100 2 tabs every 3 hrs. I would love to have normal facial expressions again. I'm 68 and have PD for 8 yrs.
I am happy to share with you the supplements I take. I would suggest that you at least"Google" each one so you can see what role they play.i also have inflammatory arthritis (I take methotrexate for that).
I just went from taking Carb-Levo 25/100 every 4 hrs to Carb-Levo 25/100 ER. The extended release seems to really help in getting through to the next dose more smoothly.
I hope you find some help with this. My doctor is just amazed every time I go into his office. God's grace is amazing !
Hi Playergirl....I'm a bit confused. Do I understand that you take 1 tab of Carb-Levo 25/100 ER every four hours? How many times a day? Thank you for sharing the list of your supplements. Very helpful.
Yes, I take 1 tab 25/100 every four hours, starting when I wake up in the morning which is usually around six or 6:30 AM and I take them every four hours until bedtime, which is usually around 9:30 p.m.
I am doing very well with just sinemet 25/100 too. I have taken it every 5 hours since being diagnosed by a regular neuro--at 6 and 11 AM and at 4PM. After 4PM I don't take anything. The Movement Disorder specialist I also see sees no reason to change that schedule. I really like it because with it I have no symptoms at all. I hope that continues. I do try to stop any progression by exercising as much as I can. I think it is good to have a good quality of life now and I try not to worry about the future problems I may have.
Thank you for your prompt response. I did not know that you experience dystonia. I am the caretaker for my son who has dystonia in his neck, VERY rigid. It probably was one of his initial symptoms or very close to it. HIs neuro has offered him Botox. So far he's thinking whether to accept. It's interesting that the ER C/L-dopa brings it on for you. My son takes 2.5 tabs, 3X daily, of 25/100 generic C/L-dopa. He was DX August 2015.
I respect that everyone has a choice and what works for one person may not be the right answer for the next.
MY QUESTION is how many PWP that have developed severe Dystonia from taking carbidopa/levadopa medication would still take it if they had it to do over?
Yes Sinemet was great for about the first 5 years after I started taking it but after 15 yrs of having Young Onset Parkinson's and developing severe Dystonia I would not take it if I had it to do over.
My worst dystonia was before I began medication, in my thigh, so painful. Now the foot dystonia passes and isn't too bad so I don't fit the question criteria.
Dear Darkflower I am sorry about your symptoms, my wife also has a Young Onset Parkinson's (she's 44 now, diagnosed 7 years ago) and develops severe storm of dystonia from sinemet and we don't know what to do... recently she had ruled out a Wilson's and Lyme diseases, she never had any tremors only stiffness. We are literally scare to take L-dopa... she's nauseated all the time and vomits... what you are taking for nausea ?
I am sorry for the Dystonia. Has your doctor suggested Botox shots or epidural shot or anything to help the Dystonia? My son was DX, Datscan, August 2015. He suffers neck (very stiff) Dystonia. His neuro has suggested Botox shots. My son said he's not ready, but has made an appointment to see a physical therapist. He takes 2.5 25/100 C/L-dopa 3X daily, and supplements. He did take Azilect for about 16 weeks which was not agreeable to his system. Now only C/L-dopa. The supplements I compiled from research, and gave the list to his neuro. No comment from neuro.
I am happy to share with you the supplements I take. I would suggest that you at least"Google" each one so you can see what role they play. I can only say these have worked really well for me.
I also have inflammatory arthritis (I take methotrexate for that).
I just went from taking Carb-Levo 25/100 every 4 hrs to Carb-Levo 25/100 ER. The extended release seems to really help in getting through to the next dose more smoothly.
I hope you find some help with this. My doctor is just amazed every time I go into his office. God's grace is amazing !
Does sinemet help you with the tight muscles and spams? I'm not sure my problem is Parkinson's the sinemet does not help me at all with my walking or facial expressions. I have had some confusing diagnosis.
The Sinemet helps amazingly with my facial expressions and my walking. However, I still cannot understand why I have terrible leg cramping always in my left leg and usually at night.
I've been taking magnesium but I was taking a multi-magnesium and not getting the real benefit. I just started taking 500 mg/day. Do you think this will help the leg pain?
I do. My left leg now is almost totally relaxed at night whereas before it was stiff with the toes curling over in jerky movements. Exhausting. I started 250mg of magnesium before being diagnosed and it helped so much. I think the azilect which I started 4 months later helped a little more.
Take it 2 hours before bed if you can.
I also find disprin brings relief from time to time.
I am interested that your face is better with sinimet, which I haven't started yet. My left side is sliding down and my eye lid is all floppy which looks weird (to me!) and is starting to interfere with my vision. I am glad I wear glasses!
Good luck with the magnesium. Also if you are avoiding salt don't!!
Hi I recently quit my job to be a caregiver to my mother. I am not sure if anyone has been taking the sinimet and decided to stop taking it. I feel like my mother's medicines are all working against her. She had neck surgery and had doner disc put in that deteriated for a year before she had another neck surgery. She had extensive nerve damage and developed PD but they say the two are not related. She has been taking meds for this probably close to 12 years now. I'm concerned because now that I'm home all day with her I am noticing she doesn't want to do much. She has constipation all the time. She has diabetes type 2 which doesn't run in our family...I just feel as if the medicine is giving her more problems than helping her. She has seen things that weren't there and has trouble sleeping. Sometimes she can't get herself out of bed in the morning. She's been taking meds so long I'm not sure what she was like before all these meds. My question is has anyone stopped taking parkinsons meds and ended up better than when they were on them. All the side effects of sinimet exist for my mother just not all the time. Thanks so much for any help you can give.
I have been having extreem Constipation for about 6 months. During that same period of time I have had to modify my cd/LD as it continually ceased to work for the time period scheduled. My Neuro told me that if you have 3 bowel movements a week then you are not constipated.
I changed neuros and my new Neuro told me what I had suspected but had not found any support for what I believed. He said THE MORE CONSTIPATED ONE IS, THE LESS EFFECTIVE THE CD/LD IS IN YOUR SYSTEM. Since the cd/LD only gets to the brain when it disolves in the intestines if it can't get out of the stomach because there is too much food to digest or the intestines are blocked with crap, the meds become less effective.
Since I got confirmation about my belief, from the doctor, I began in earnest to relieve my Constipation. The next day after a big bowel movement, I feel the most energized I have felt in a the past 6 months.
I believe that there should be more focus on relieving Constipation from the medical community to help us who are looking for answers to our medication questions.
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