Hello everybody , I've actually joined this forum for help with my acid reflux problem lol but my mum has parkinsons disease aged 46.
She was diagnosed 3 years ago and was told to take tablets then but never did since she was scared of the possible side effects. Mainly dystonia and dyskinesia.
The tablets she was told to take were called " rasagiline " , this was in 2008.
By the time she got to see her doctor again he said they would have little effect anymore and wanted her to try " Maopar ( Levodopa + Benserazide ) 50mg.
She still hasn't started any tablets yet and is still very concerned with the possible side effects. Her left arm is very weak and she can't do things she used to such as wash her hair , apply make up or use the laptop with it.
She is also developing a slight drag in her left leg which also tremors now and then. If anyone could give any advice or help regarding this medication it would be really appreciated.
Thank you for taking the time to read.
The following user gives a hug of support to IWILLGETBETTER: nettybear63 (09-30-2011)
Any help with this would be greatly appreciated.
As mentioned my mum is worried about symptoms of the two drugs mentioned and if anyone has any experience with these drugs anything would be helpful.
What side effects came on ?. How quickly they appeared if any ?.
Things like that.
My husband is on Madopar 62.5 x 3 daily and a 125 slow release overnight. He also takes Azilect, found only after looking on this site and suggested to our Dr. It is known as Selegiline here[NZ] and he takes 5mg daily. It was a revelation. He has been stable for two years now but without the Azilect he feels slow, sluggish and less mentally alert.
We are told that Madopar is a low dosage medication and my husband has had no side effects from the word go. He still potters under the tractor engine but says it takes him hours to do what could be done in one hour previous to PD as dexterity/strength goes missing.....probably what is happening to your mum.
Levadopa is the best drug for treating Parkinsons in terms of improving symptoms. Using it over time (usually 3-7 years) may produce side effects such as dyskinseas and distonia. Some people feel using Levadopa will eventually produce these side effect so they wait as long as they can before starting Levadopa (also called Sinamet). The key with Levadopa is not to take it in large infrequent doses. Many experts feel it is large doses of 1 1/2-2 pills taken all at once may be ok for a short time....but may also later produce dyskinesias. This is called the Pulsatile Theory of Levadopa Administration"...It is usually much better to spread out smaller doses throughout the day to try to keep blood levels stable. Go to see a top neurologist and get their opinion...the go see 2 more. Have all 3 read this right here. Thats your best bet....good luck!
Hi Karl. Since I wrote re madopar over a year ago my husband has moved to the sinamet medication and it is keeping him stable without ill effects. He takes three tablets though the day with the slow release at night. We live in the far north of NZ and also have the neurologist problem so it's kind of 'fingers crossed' and I have found this site to be very informative. Ce
Hi Karl. Since I wrote re madopar over a year ago my husband has moved to the sinamet medication and it is keeping him stable without ill effects. He takes three tablets though the day with the slow release at night. We live in the far north of NZ and also have the neurologist problem so it's kind of 'fingers crossed' and I have found this site to be very informative. Ce
Hello Ce: not sure if is the right way to reply, do you have any experience? C.U.L.
Hello Ce: I hope this is another way how to answer your mail.
Thank you for responding so quickly.
There is a shortage of good Neurologists everywhere, even worse in far north where you are. Is it much further up, past Whangarei?
Is there another medication except Sinamet and Azilect? I'm sick and tired taking too many drugs (Madopar 100mgx5 a day and Sifrol 1mgx3 a day).
Seriously thinking about the natural therapies, it includes well balanced diet, calcium, vitamin D, B12, green tea, strawberries, blueberries, drink plenty of water, exercise and walking. Hoping to eliminate those horrible drugs for good.
I also take bee pollen, Manuka honey, chlorella, Lecithin, Fosmax, Bonecal etc.
You might be wondering why I take so much, I am 75 and quality of life is rather limited, that's why I do anything to lessen my suffering.
Also checking Sinamet, one of the side effects, includes that your sweat, urine, or saliva appears dark in color, such as red, brown, or black. This is not a harmful side effect, but it may cause staining of your clothes or bed sheets.
Do you know anything about that?
Hi Karl,
The hospital neurologist put my husband on sinamet when diagnosed and it was his Dr who advised madopar as a lower dose medication to start with. That kept Les stable for three years. He now takes 3 x 25+100 sinamet daily and a slow release at night. There is no discolouration in sweat/saliva/urine. I find the medications available confusing and very much rely on this site and the experiences of others and Les' Dr being able to manage any changes in his condition. I always feel that with people being affected so differently it's a guessing game. Les frustration is with the feeling of bone tiredness and the inablility to get the body to do what you want it to. I avoid any stress situations and now look after all finances etc as his memory is not reliable.
We live on the glorious Tutukaka Coast.
Last edited by cejayb; 08-31-2012 at 07:24 AM.
The Following User Says Thank You to cejayb For This Useful Post: karl456 (08-30-2012)
My mother had PD for 15 years. She passed in 2005. She hope and prayed for a miracle cure but there is none. Since then treatments have improved greatly. Sadly, I was diagnosed this past January. My symptoms started back in 2010 when I was 48 years old and I had the same symptoms that your mom is going thru; stiffness, tremors inability to do basic tasks, walk with a limp, etc. It was horrible. When diagnosed, my doctor put me on MIRAPEX and OMG what a difference! I felt much better. As to side effects, yes there are many but I, so far, experience a few such as weightloss, nausea. I can't imagine going thru PD without meds. She should take her meds and will feel much better. Exercise is so important. It helps flexibility and strength. The meds regardless of its side effects is to better the quality of life. Without them it will make life unbearable. PD affects people differently and meds may respond differently. Its important to have a good relationship with your doctor.
Hello Cejayb,
Thank you again for the valuable information.
I also have a hospital Neurologist from outpatient ward, she helped me with Madopar and Sifrol 4 yrs ago. But, I'm back where I started, I'm thinking about Sinemet to try.
It's good to know, there's no discoloration on sweat/urine/saliva, with your husband Les.
Also agree, the medication for PD is a complicated matter, what is good for one, isn't good for others. It is a guessing game, for sure. I have noted your remark that Madopar is the starting point and the mildest. I guess, it is now necessary to have the the other...
'Bone tiredness', is it possible to be more specific, please? I'm glad to see these expressions because I'm having difficulties finding the right expression with some of my symptoms and feelings. Inability to get the body to move where you want it, that's a typical PD symptom most PD sufferers get, if I am not mistaken.Does it mean that Sinemet isn't working? I have this most of the time. The tablets aren't helping much, what does help, is the exercise. I usually go for a walk, trying hard to maintain my good posture.
The stress factor is very harmful, especially for PD sufferers, I have no reason to be stressful, being surrounded by good friends and environment.
Yes, you live in paradise. I can see Tutukaka and Marine Road on Google maps. A beautiful place to be, all we need is, to be healthier.
Does Les still drive the car and does he go for walks? I guess with his working medication, he should be able to do both. What about his sleep? Does he get up to go the bathroom often? Any problem with turning around in bed? I do have plenty of troubles with all that. Life hasn't meant to be easy. I have my loving wife Libby here, no family, we have to support each other as long as humanly possible.
Sorry to be so long winded, looking forward to know more from you.
Regards, Karl.
Some basic things to remember:
1. First work with your neurologist. Parkinsons is a "moving target". Over time, what worked before may begin to not work as well, and what works with one person may or may not with someone else. DON'T just try something suddenly. Check with your doctor about making slow changes with your meds. In general, when making changes...especially when trying something new...start with a very low dose and move up slowly after 3-5 days. Carefully observe and RECORD in a notebook any and all changes noticed. Your neurologist will need this sort of info. In general work with your doctor and try to use the minimal amount to get the desired result. This philosophy often minimizes side effects by custom tailoring the dose for you.
2. Sinamet (Levadopa) is the gold standard med. It tends to control symptoms best with the least side effects. If you are taking Agonists and have not yet started on Sinamet, and are doing ok on the Agonists, it may be best to wait to use Sinamet. If you are taking Sinamet it is important to try to keep the blood level as constant as possible. Too high a blood level of Sinamet (Levadopa) can produce odd behaviors, aggressiveness, insomnia, twitching and later over time, the dreaded "dyskinesia". Too low a blood level shows up as weakness, drooling poor swallowing, tremor (sometimes) and feeling poorly. The idea is to try to keep the blood level more constant by taking smaller doses a little more often...rather than a few larger doses less frequently. This less pulsitile delivery of the Sinamet could also reduce o prevent dyskinesia. If you dont know what dyskinesias are FIND OUT NOW.
3. Other drugs like COMT inhibitors and MOA inhibtors make the Sinamet last longer, but fine tuning how much Sinamet to how much inhibitor is very tricky.
4. All these Parkinsons drugs require fine tuning which comes from daily record keeping including dates, times and what was observed. This chart should help your Neurologist design a Med schedule for you. If a good Neurologist is not available a detailed chart/ journal as Ive described can help a doctor far away to see patterns and make suggestions. If you lve far away from a good neurologist email your journal to every good nerologist you can find on the internet. Just copy and paste it into the email box to save time. Maybe 1 out of 10 or 20 will answer you, but the relationship will be extremely valuable. Best of luck...
The Following User Says Thank You to flex77 For This Useful Post: cejayb (09-02-2012)
Hi Karl,
Also taking note of the information from flex, and I had to look up inhibitors having never heard of them. Les was diagnosed in May 2009 and began taking Sinamet in April of this year. He began by taking half a tablet as that was the equivalent dose to the Madopar and gradually moved to the one tablet dose without any ill effect. He has a slight tremor in his hands and lower arms and there are times when he is walking that he says that he does not feel stable on his feet [then I find him half way down a bank cutting trees!]
There are days when he wakes up and feels 'normal' as he puts it and others when he feels that he doesn't even have the energy to do 15 mins on the exercycle. He's not tired but says that the body just doesn't have the energy to move. Our miserable weather at the present time also seems to have an effect when he can't get outside to potter. He sleeps well, doesn't need to get up in the night, but says that he has to 'heave' himself over in bed and if we have an appointment I always make it after 11am as it does take him some time to shave/shower/get organised and having to hurry causes stress.
He is still allowed to drive for two years-had to take a driving test. However he rarely drives now and never in town I think that it was the thought of more independence being lost that hurt.
I have been more aware of the change in his personality. From being cheerful and easy going I assume that it is the frustration, and possibly a form of denial, that has made him short tempered and edgy. He can, as they say, sometimes 'cause a row in an empty house' and I am at a loss to know the cause so I go with the flow. He has become reclusive and I have given up trying to persuade him to come to activities even though I think that an active mind and social mixing is so important. He matches you for age and had always been an active and very fit sportsman. He was the practical person in our home and gets frustrated when it takes him a long time to do mechanical jobs that he could have done with his eyes closed and when his hands can't manipulate tools.
I feel helpless and keep reading in case there is something that has been missed. The magic 'whatever' that is the correct mix for him. I assume that the tablets control tremors and the seesaw tiredness and slowing is part and parcel of the disease [flex??]
Take care Ce
Thanks for this valuable info on meds.
PD is a moving target and needs to monitor your changes.
To record these changes are essential, which I am going to do.
Wondering if Madopar was the best way to start with.
At first I was with very low dosage, after a short time it had to be
increased. Today I am back where I was.
I don't know what Agonists are, will check out.
My BP (bld pres) is mostly low, something I always had perfect
before Madopar.
Noted COMT & MOA inhibitors also essential to keep Sinemet work
longer. Dosage is also very important and the fine tuning as you go.
Also wondering, if it is still possible to find any Neurologist on the net
and expect to get his response.
Thanks a lot once again, for these very valuable points to do
and to remeber.
It is not necessarily "part and parcel of the disease" but more the treatment of the condition using the meds that causes what you are seeing. They have a rising..and then a "wearing off" in terms of their effectiveness throughout the day. It would be good for you to watch for these rises and falls and record them in a journal....the "anger" may be frustration, or possibly a rising of the levadopa blood level. His "heaving" in bed is most likely a sign of low or fallen levels since he doesnt take any meds while he sleeps, and these are signs of low blood level. I strongly recommend you speak to your doctor (DO NOT just up and try it yourself) about breaking up the one tablet of Sinamet and spreading in 3-4 parts throughout the day to even the blood level. Peaks and valleys of Levadopa in bloodstream create side effects. More continuous levels mimic a more natural flow that takes place in non-Parkinsons people. You might try asking your doc about giving him 1/4 of a tab when he wakes...and then letting him stay in bed for a few min until it takes effect. It's good you have an eye on his stress...very important...watch yours too. Dont get caregiver burnout. Take time for yourself or you will never do as good a job caring for him. Everyone needs a battery recharge. It's ok and it is the right thing to do.
Try to coordinate his exercise with his "on" time (when the meds work best) and rest during his "off time" (tired, drooling etc). "On" time can be maximized and "off time" reduced with a good med schedule based on evaluating good record keeping. I highly recommend traveling to see a TOP neurologist familiar with prescribing and monitoring Parkinsons meds. I hope I am helping...thanks and good luck...
This Neurologist doctor has a reputation as a Parkinsons expert in your area...Though I live in the USA and dont know him personally..maybe try calling him?
Dr. Peter Silburn
Brisbane, QLD
Last edited by Administrator; 09-06-2012 at 08:15 PM.
COMT & MAO inhibitors are not essential though they may help....they can also cause side effects and make dosing more complicated. You need a good neurologist to help in this. It is a complicated puzzle...but one that can almost always be improved with work...best of luck from Los Angeles
Last edited by Administrator; 09-06-2012 at 08:15 PM.
I started recording my response to medication, every day now.
I can see that Les is better off than I. I quote: "on some days, he wakes up, feeling normal". That's something I don't get for many months. I wouldn't have a day without tingling legs, freezing off situation, disabling me to walk without an extra effort. The only way I can function is to keep exercising and walking. He is also very lucky that he doesn't have to get up at night, I do it twice. The weather also makes a difference, you should be getting warmer weather from now on. So, here you have it. Being moody or short tempered i probably a part of PD, I am a quieter type, so far. All I have to say is: "yes dear". My dear wife Libby is my guardian angel, it will be our 50th wedding anniversary next month. I am sure, you are also very caring person, you want to help Les as much as humanly possible.
I came across with Inhibitors on the net, they are sometimes essential to have. There is just too much to read and learn and to remember.
Unfortunately, we can't do without those awful tablets. Well balanced diet and exercise, can help a lot. The exercise bike, walking or even swimming is very good. As a routine, I go for a walk for about 2.4 km a day.
I found it hard to believe, the tablets would help to eliminate any tiredness. That's something we have to live with it until the end, especially with PD.
Also wondering about Les' BP, mine goes down to 73/46 or 67/45 every morning, I must lay down as I feel like losing consciousness. Libby usually gives me a salt and later black coffee. I am alright after that.
"Madopar can cause many side effects, including a sudden drop in blood pressure when getting up from lying down or sitting, which can result in dizziness or fainting" This actually happens in standing position.
Take care...
Last edited by Administrator; 09-06-2012 at 08:16 PM.
Reason: removed quote
