I have had tremor in my rleft hand and arm for 3 years but it is only embarrassing and does not stop me from doing things. I am 72 and am active. I enjoy gardening walking and creative hobbies. My neurologist has prescribed Madopar 100/25 to be taken 1/2 hour before meals. I now feel terrible. Have nausea then diarrhoea and generally without energy. He has told me to reduce it to twice daily but I would prefer to stop it. It has not helped my tremor. I would like to know if others have had these problems. I have read John Peppers book but when I took Azilect had insomnia. Also have back problems which prevent me from walking fast. I live alone and do not have anyone to ask about these problems. Many people do not seem to know anything about Parkinson's. I would appreciate any advice about taking Madopar.
Madopar side effects: I have had tremor... - Parkinson's Movement
I you get no benefit from the Med don't take it
Madopar (levodopa & benserazide)
Sinemet (Carbidopa-Levodopa) is another form of med you are taking ask your Dr about it
I do not have this problem with Sinemet but others on this forum have said they do.
What other symptoms of pd do you have
Thank you for your reply. The only other symptom that I have is reduced arm swing and some weakness on left side. The tremor disappears when I am using my hand.
As for your back if you may need to do some exercise to strengthen your core
Search the web for exercises you can do
I do not have tremors. I take 1/2 Azilect daily. I can tell the benefit. I tried a whole but it didn't go well.
Get your GP or PD nurse advice.
It wouldn't be too big a surprise if the doctor prescribed something you didn't really need or too much of something that might otherwise ease your symptoms. Madopar is available in smaller dosages (50mg/12.5mg) which may have been a better way for you to test its benefits (or lack thereof).
Bottom line: if it seems to be causing more problem than benefit (after a reasonable period to test efficacy), you should discontinue use. It may be worthwhile to read the product summary to see if it seems to suit your symptoms: medicines.org.uk/emc/medici...
Also worth keeping in mind is the possibility that you may have 'essential tremor' rather than Parkinson's since, as you say, your tremor does not improve with the levodopa component of Madopar:
"Unlike the tremor of Parkinson's disease, essential tremor does not improve in response to levodopa. But it may be relieved with other medicines (for example, primidone or propranolol)." webmd.com/parkinsons-diseas...
Finally, if the only 'trick' available in your doctor's bag is Madopar, it may be wise to find an alternative opinion... maybe from a 'movement specialist'.
The drugs only control symptoms,, not the underlying progressive condition. As it is entirely subjective how much symptoms interfere with your quality of life, it is for you to decide whether you want meds or not at this stage. I was asked if I wanted to go on meds when I was diagnosed. If you were becoming inactive, for example, then it is advisable to take sufficient meds. to allow you to use it or lose it which was never so true as in PD.
It strikes me that the neuro is perhaps going by average rates of progression rather than looking at you individually and listening to you.
However, for future reference, Madopar contains Co-careldopa which........ " contains two ingredients, levodopa and carbidopa. Once in the body, levodopa is converted into dopamine which helps to restore the level of dopamine in the damaged area of the brain. The carbidopa ingredient helps to prevent the levodopa from being broken down into dopamine in parts of the body other than the brain. This means more levodopa gets into the brain to be converted into dopamine, and it also helps to reduce side-effects". I've quoted this as it is so as not to introduce errors but the last few words are the relevant ones. Until you are taking 75 mg carbidopa the incidental anti-nausea effects do not kick in so you are likely to feel more sick at a daily dose of less than three 25/100 tabs. Sinemet which I take is another preparation of Co-careldopa and I certainly was violently sick till I reached three 25/100 tabs, a day which many consider the minimum therapeutic dose. Domperidone is used for nausea in PD because it does not clash with PD meds.
Such matters seem to be beneath the notice of such lofty persons as neuros. but when I had that nausea I felt as if I was going to die. None of this was mentioned to me at the time of my diagnosis adding quite needlessly to my feelings of shock and desperation .
Many thanks for this information. I am very grateful. Agree with your thoughts about the neuros.
What are your thoughts about effective range (norms, not so norms) for sinemet 25/100, ie 3 tabs to ? tabs)?
Hi hu1000 I am not exactly sure what you are asking . I am not medically qualified in a way and I haven't actually come across anything relating to maximum dose for Sinemet plus in my googling just the minimum effective. I know many people seem to be on lower doses and PD being so individual there could be perfectly good reasons for this. Personally, 6 years after dx., I cant take more than 150 mg levodopa in one dose without provoking mild dyskinesia, which at my age (76) is not very common so I have Neuro patches along with four Sinemet a day.
The neuro wanted me to stay below 5 a day before the "wriggling" started but he didn't say why being a man of very few words
Thanks for your reply. I place value on your experience.
i know you are not a physician and that your posts are not medical advice.
like you, i have been disappointed with neurologists. Your personal experience on this topic is more helpful to me than the consultations i have had with two neurologists over a seven year period.
I haven't heard of Madopar, but there are many other things to try for a tremor. Your quality of life is important. My neurologist put me on a series of meds that are used successfully to treat epileptic seizures (not all at once!) and it turns out many people find them helpful in quieting tremors. Unfortunately none of them worked for me but they might work for you. I might start taking something called propranalol (sp?), a beta blocker. Would you ever consider DBS?
It was suggested to me that I always take madopar with a biscuit or a banana to avoid nausea.
Are yo certain of your doctor's diagnosis. Is it possible that you only have Essential Tremor which if I remember correctly doesn't respond to Levodopa. It is quite normal to feel billious when taking Madopar, that is the Levodopa in Madopar does..
I am 73 & like you have a tremor but am otherwise healthy & active. I won't touch conventional medication, it doesn't cure, maybe provide some immediate relief but make the situation worse in time. My struggle to overcome this covers the following :
Fitness with daily exercise. Don't eat wrong foods (processed & sugars etc). I eat highly nutritious food (including green blended smoothies, coconut oil etc. As you research you will find many important foods). Cold showers. Positive thinking ( that of course is a whole world of its own). Drink plenty of rain water. Keep busy with interesting hobbies and service. Good books, good music and be happy.
Good luck love, Pat
Thanks Pat. I find your thoughts very inspiring. I could manage the cold showers in summer but could be a problem in winter.
I like your healthy lifestyle but I don't follow the argument not to take Meds because they are not a cure. Neither do Meds for Blood pressure, diabetes, migraines, epilepsy, irritable bowel, reflux, ............ cure the condition they treat symptoms.
As to making the situation worse over time, by no means true for everyone, for instance I don't see people in their late 70's and 80's with dyskinesia, maybe some do but it is the younger onset particularly who get it.
Yes a healthy lifestyle as you are following is a good idea.
my mom had terrible dyskinesia's in her 70's after years of meds
Sorry to hear that, she probably started Meds I her 50s then which is my point that if you start In your 70s you are far less likely to get dyskinesia .
you are right, she started at 55- I did not know this fact that if you start in your 70's less likely to get dyskinesia- it is good to hear as dyskinesia is my biggest fear after watching her suffer- thanks-
Because of the ongoing, progressive nature of Parkinson's, all of us affected will eventually reach a point at which the extensive depletion of our dopamine-producing cells will overwhelm any dopamine-boosting benefits derived from the various medications and/or supplements taken to address this particular aspect of the condition.
At this point the full gamut of symptoms inherent to PD will begin to manifest themselves. Far too soon we're left with the choice of either entering the 'medication lottery' where - together with a doctor's assistance - we become guinea pigs for the latest drugs approved to address the variety of symptoms as they emerge (and we're left again to try to distinguish the emerging symptoms from the effects of the drug/s taken to address them) - or - we inform ourselves of the most reliable natural lifestyle and diet options (inc. natural herbs & supps) and go with that.
Meanwhile, we await one of the prospective 'cures' in the works (GDNF protein-producing immune cell, anti-tau/a-syn-busting antibodies, pluripotent stem cell, etc) to prove viable and be made available...
"Conventional medical approaches to treating Parkinson's disease aim to replace the lost dopamine, but fall short of addressing the ongoing destruction of dopaminergic neurons. Over time, the ability of medications to replenish dopamine levels becomes overwhelmed by further loss of dopaminergic cells. Moreover, the pharmaceutical drugs typically used to alleviate symptoms of Parkinson's disease are laden with debilitating side effects and often worsen affection over time. Thus, the prognosis for Parkinson's disease patients relying on conventional treatment remains limited."
I have been taking Madopar now for 12 years. Now 62, I have had PD for 21 years. Of all the medications tried, it is the only one that has worked for me. However, I will make the following comments with regard to your situation:
125 mg doses are too large initially, unless it is the CR (controlled release) version. Better to take 62.5 mg, more frequently if necessary. I was started on 125 mg doses and squirmed around like crazy as it got into the system, but reducing to 62.5 mg stopped this. NB - taking half a 125 mg capsule is NOT a good way to try a lower dose - it must be a 62.5 mg capsule.
It is recommended that Madopar is taken with food, but I have never bothered with this. Fortunately, I have never had any gut problems. If taking with food, it is essential to ensure that food is NOT protein, since this interferes with the absorbtion of Madopar and prevents it from working.
Taking Madopar 30 minutes before a protein rich meal is too close. I would recommend at least an hour should elapse between taking the Madopar and eating such a meal, and an even longer delay in taking Madopar after the meal.
If benefit from taking Madopar is not felt immediately, it is unlikely that it ever will be and casts doubt on the diagnosis. As others have said, it will not slow down the progression of PD - it only treats the symptoms - so if it doesn't help there is no point in taking it.
Thanks. This is very informative. The tablets that I was prescribed are 100/25mg and I was told to take 1/2 a tablet 3 times daily 1/2 hour before meals for 2 weeks then increase it to one tablet 3 times daily. I did this for 3 days then felt very ill and developed diarrhoea. Phoned the neuro and spoke to the receptionist who later called me with the instruction to take them twice daily. I am now taking 1/2 about 15 minutes before a meal and today the nausea is only mild. I will follow your advice and now make sure that I do not have protein. I had read that this medication is affected by protein but when I asked the neuro about this he dismissed it.
It seems that everybody is so different in their symptoms and response to medications and because there is not a test that gives an accurate diagnosis then it is a matter of trial and error.
Your last paragraph is very true. We do now have the DaT Scan which is not foolproof but can give a good indication of dopamine levels. An earlier method of diagnosis was the DOPA Challenge whereby a single dose of L-DOPA was given and the results noted. A positive result, ie an improvement of symptoms, was a diagnosis of PD. Treatment of PD is very 'trial and error' since, as you say, we all are so different.
I may be wrong but have always understood that Madopar capsules should never be halved since this could lead to getting the DOPA/Benserazide proportions wrong. This is why they make a 50/12.5 mg version.
I am surprised at your neuro dismissing the effect of protein - I find it an essential consideration.
Thanks for your reply. I am taking a tablet which is scored and can easily be broken in half.
Is that a Dispersible tablet, or one that you swallow?
The tablet is not dispersible. It is scored, and can be halved. It is swallowed.
In that case, I'm sorry to mislead you about taking half tabs! I was not aware of Madopar in tablet form, except for dispersibles. The only other Madopar I have encountered is in capsule form and it is these which should not be halved.
Is that the usual rule for taking PD medication and ingesting protein?
It seems to depend on your medical advisers, but it is an important consideration when taking L-DOPA - ie Madopar and Sinemet. As with all things in PD, we all react differently, but, in my opinion at least, it SHOULD be the usual rule to keep protein and L-DOPA as far apart as possible. In my case, I can eat protein quite soon after taking Madopar - 20 minutes or so - but it can be in excess of two hours the other way round, depending on the protein source. Dairy protein tends to be slow - and eggs are lethal!
Thank you for this, Moodyblue. It's my husband who has PD. Nobody told us this. You've done us a favour. He couldn't take Sinemet or Madopar. They sent him into a deep sleep. He's just been changed to Carbilev and is with us again!
Where are you living? I Have found Sinemet CR beneficial, taken after meals, but due to high GI sensitivity I have to take Donperidone before eating to avoid nausea and stomach cramps. The slow release format of Sinemet seems to be easier to handle and since I am in the early stages of PD (72 yrs old) my tremor wasn't/isn't too bad and after only a month on Sinemet 100/25 4 times daily I have seen improvement.
I live near Sydney, Australia. Find it interesting to read that several people are taking slow release medication and will have to find out if this is available here. I have had this tremor for 3 1/2 years (started with a painful shoulder for 2 years) and it has gradually increased and is worse when I am anxious and after exercise. I find it encouraging that your tremor has improved and you have found a way to tolerate the Sinemet.
Your symptoms have presented similar to mine, including sore shoulder and increasing with anxiety or increased activity. My soreness extends to my back, upper and lower, legs and feet. I am keeping active with regular Pilates, yoga designed for people with movement restrictions (some with arthritis), but also am going for acupuncture and massage therapy with practitioners that understand the condition and my personal situation. I have built up this support group over the past 3 years. I am also checking out a new physiotherapist who has developed her practice working with PD patients. I don't have unlimited funds so I spread out the services to meet my budget. My neurologist is very supportive too.
I had the painful shoulder for 2 years and had treatments from physiotherapists, acupuncture, did exercises at home but nothing seemed to relieve it. Then it went and the tremor started.
I like the way that you have built up a support group and will have to look into a way that I can do that.
There is no point in taking PD meds if you can deal with your symptoms. My tremor does not prevent me from doing anything. Other PD symptoms are more disturbing but none of the PD meds address those issues and I take care of those with common-sense age-old solutions.
I agree with your thoughts but when other people started noticing my tremor I found this was preventing me from going to classes and social events that I previously enjoyed. When I went for my last 6 monthly visit to the neuro specialist I told him that the tremors had increased at times and he immediately ordered the medication. I am now looking at ways to tolerate it and see if it helps the tremor then make a decision about continuing it.
Lu are you in touch with Parkinsons NSW?
Dance class would be great if accessible!
I take Madopar [25/100], 2 capsules thrice daily, plus Madopar CR 2 caps x 2 and this has been so for about 10 yrs and no side effects that I'm aware of. The person to put you right is your neurologist, after all, he's responsible for controlling your meds. If you're not happy you are perfectly in your rights to get a replacement.
Hi would just like to say that I was given propranalol ( a beta blocker) and have found this really helpful with my tremor. Wishing you well in finding the right ba lance of meds for you.
Thank you for this advice. I will ask my neurologist about this medication . Do you take propanol regularly? I had to stop taking Madopar because of diarrhoea and am now taking Kinson and started on a low dose which will gradually be increased. Am hoping I can tolerate this one. Thanks again.
I am 83 years old. It is about fou r years that my right hand started tremor. I consulted with the Doctor .One Doctor believed I do not have parkinson but two other Doctors believed I have parkinson. Now it is about one year I am taking this medication: Madopar 125 mg six times a day and sifrol
Hi . I’m on Stanek (100) 3x a day plus Requipb(8mg) x 1 a day. My Stanek has just been doubled with only slight effect. I eat/excercise well too but am only 55 and worry about these drugs. Anyone else have experience of Stanek?
Lu45 your an inspiration..good on You!!! I wish my mother was like that I know we are different and react differently to medication and so on but I n a carer for mum at home she's 82 years old and in past very active....now I find her to only be sitting around and walking from bed to couch n so on. She has no drive no interest in nothing...the doctor told mum that they won't do tests as there is to much involved. So how they came up with Parkinson's I don't know...all she has is a hand tremor. Also the medication isn't doing anything she now is very anxious and depressed...she seems to be getting worst not with so called Parkinson doc says she has...ice tried so many time talking to doc n neuro but they just dont listen. .any thoughts lu 45... keep up your great work and your positive look on life which is the best medicine .