I have taken my father to two different movement disorder specialist nurologists. Both said my father has parkinson. He does not have tremor but his actions are very slows and he walks slowly too. One doc prescribed stalevo the other prescribed trivastal. my father took stalevo but we see no improvement in his slowness etc. Noe I wonder whether trivastal would be better for him? What is the difference between stalevo and trivastal??
Medication advice: I have taken my father... - Cure Parkinson's
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How slow is he? The medications just help to relieve symptoms but not to eliminate them. If the medications helped him 60-70% then I think that would be a good result.
in reply to Kia17
No I definately dont think the meds helped him 30% even...and i dont know which med is better stalevo or trivastal
Kia17 in reply to
In this case his neurologist needs to consider other medical treatments.Finding the right type of medications and correct dosage is a bit hard at the beginning but can be achieved by working closely with his neurologist.
in reply to Kia17
I see I will try to do so but the doc is very agressive and doesnt listen to patients carers
wifeofparky in reply to
If the doc does not listen to your or your father, then I suggest trying a new one. No one will improve unless the doc and patient/family are able to communicate with each other.
in reply to wifeofparky
Yes I agree I wish he would listen..thank you so much I should try another one
There is a world of difference. Stalevo will do him no harm. OTOH re trivastal: After 15 days of the minimum dose, I suffered disabling impairment of my postural blood pressure regulation system. Even though I stopped taking it immediately, for the ensuing month I was unable to stand most of the time without fainting due to loss of blood pressure upon standing. Yet while reclining my blood pressure read over 200 systolic.
Here is a study showing every single one of the patients receiving a tiny dose of piribedil / trivastal immediately suffered loss of blood pressure: europepmc.org/abstract/med/...
Dopamine agonists such as trivastal should be a last resort. There are other meds he can try such as MAO-B inhibitors.
in reply to park_bear
Thank you so much for this
Steff
Thes are two different types of meds.
Trivastal belongs to the group called dopamine agonists
Stelevo beloncgs to the levadopa group
I dont know your fathers age but the older the person the less likely they are to tolerate dopamine agonists. As well as parkbears experience (which is an extreme reaction) there are other potential problems. To start dopamine agonists need to be introduced very slowly and build up the dose over time.
The levadopa meds are the gold standard meds usually beginning with carbidopa/levadopa. Stalevo has an extra ingredient that is usually added later.
The stiffness type of pd often doesnt respond as well to meds but they still should work. How long did he try them and at what dose?
in reply to Hikoi
Thank you so much for this. My father has been taking stalevo since approx three months. The dose is three times daily 50mg levadopa, 12.5mg carbidopa, 200mg entacapone
wifeofparky in reply to
Is he taking the levodopa/carbidopa on an empty stomach? Protein in foods interferes with the absorption.
in reply to wifeofparky
Yes he takes the meds 45 minutes before his meal
Hikoi in reply to
I would have expected some improvement in mobility and speed but this may only be evident if he stops the meds. It is not wrong to use stalevo but it is unusual. I would be wondering why the neuro is using stalevo early instead of just carbidopa/levadopa and increasing the doae until you noticed some effect.
You may find useful info here
parkinson.ca/wp-content/upl...
in reply to Hikoi
Thank you so much for this. So is the third ingredient entacapone in stalevo unusual in treating parkinson? what medicines are there that contain levadopa/carbidopa?? Which ones only contain levadopa and carbidopa??
Hikoi in reply to
Steff there are lots of resources on meds. See one i posted above, but most pd organisations have publications on line.
Entacapone is used in pd. it is used to make the levadopa last longer and usually introduced when a person has been on meds a while.
Sinemet is the most common carb/lev drug. They go by different names in different countries.
Interesting discussion here
forum.parkinson.org/topic/2...
in reply to Hikoi
Thank you so much on this..what about madopar does it have levadopa and carbidopa ? Is it suitable for pd patients at first stage? I wonder what the typical med for a person diagnosed for first time on pd would be
Hikoi in reply to
Yes madopar is similar to sinemet. Typical starting med varies by age symptoms and country. In UK there are the NICE guidelines for treatment. Try goggle, guidelines parkinsons, for your country.
in reply to
I was put on Stalevo 50 as a first medication 9 years ago. I am still on it.
in reply to
Are you happy with stalevo? I wonder whether madapar is stronger ..the doc did say something like he would switch to madapar..but i cant talk freely with the doc
in reply to
I am happy with it. Stalevo comes in different strengths. Stalevo50 is the lowest dose of levodopa. Perhaps trying a higher dose might help.
hi 123. well it does sound like pd. he has to tell him to put both arms out in front of him palms down fingers straight and get him to wiggle his fingers at the same time if one hand dont wiggle the same as the other then im sure he has pd,,i dont know why hes giving him that .he should be on either sinemet or mardopar i prefere madopar lots of pd people have trouble with sinemet,including me .take him to a doctor and ask for either madopar or sinemet they will start him on small doses maybe patches as well he has nothing to lose doing that and every thing to gain.regards.
in reply to Motherfather
But what if both hands wiggle the same whilst he does this test?
Motherfather in reply to
hi steff well when i went to see the specialist with in 15 mins he told me i had pd my doctor had no idea i told him i had pd he said i had not pd..so in the end i showed him how to tell if some one had parkinsons if you want i can show you on skype what i mean,the fingers on both hands should wiggle the same.regards john.
Have they done any Brain scans?
Yes they have done an MRI scan
Meds never helped me. I am just like your dad. I will keep following this thread. I am off all meds now. One MD said I have it and the next MD did a DAT scan and said I did not. I took Sinimet for many years. Either quit working of I needed more. I am afraid of those I hear about that ruins marriages with impulsiveness. I am already impulsive .
Have you seen this?
pdrecovery.org/once-upon-a-...
any issues with getting off sinement?
Dr. Hadlock makes it seem scary
in reply to Coot18
Thanks. So does this book imply medications dont work??
Coot18 in reply to
It comes down to
can our brain/body heal itself?
When I was diagnosed with PD
I was told a portion of my brain was deteriorating
and cannot be fixed by medicine
but medicine could provide artificial dopamine replacement
according to Dr. Hadlock we get addicted to meds
she claims to "cure" PD with Eastern Medicine
but refuses to work with anyone who has taken dopamine replacement meds
claims they had bad experiences
very over simplified
please read for your self
in reply to Coot18
Thanks. So does this book imply medications dont work??
I am going to read this. Thanks
an article related
nationalgeographic.com/maga...
Note they talk about folks who got better even though they were on a placebo
Does my body/brain have the ability to heal itself
How best to support that healing
without detracting from healing
do drugs help natural-pharmecutical
what about meditation
note Dr Hadlock talks about Heart-Math Institute
My acupuncturist has been reviewing the Hadlock stuff
we meet next week to discuss
will share any new insights
Love > hate
Put him straight on mucuna powder
What is that?
I too do not tremor but was having an increase difficulty with walk8ng, standing and getting up from a chair. Most doc did not think I had pd; however, one sent home with me a prescription for carbo/Levo. Sometimes called Sinament. It helped me right away after the first dose. I take it every 3 hours 25/100. Doc was very happy it worked and said I do have pd.
Also now take Azilect. In the generic form in the morning which has helped a lot.
Steff, Every person with Parkinsons is different. Because one person has certain symptoms or reactions does not mean that your Dad will have the same. My Dad never had tremor but was stiff and slow.
I suggest subscribing to, or asking your library to subscribe to literature that can help. Parkinsons Foundation, APDA, and Neurology Now, are all good sources of information.
in reply to RoMo
thank you so much for this. I will do so, thanks
Not being a doctor I cannot answer your question. However, as no Pd medication does anything to slow down the progression of Pd, your husband should consider doing some exercise, some of which DOES DO something to either slow down or even reverse the progression of Pd and it does not have any side effects.
Look at my profile and see what can happen if you do fast walking. Contact me on my website - reverseparkinsons.net
Yes, exercise definitely helps.
Hi RoMo. All exercise is good for us but I'm sorry to be such a pain with this but as we would all like to reverse our symptoms I must stress that, "Strenuous Exercise, which is maintained for a maximum of one hour, and no more than three times a week is the IDEAL"
If you are not fit, which most of us aren't, then start walking as FAST AS YOU CAN until you can't keep it up any longer. That might be one minute or maybe even less. That is FINE! do whatever you are able to do, no more than every second day and after every second week, add no more than 5 minutes onto that time. When you get up to one hour, then do NO MORE! Continue to walk for one hour and keep going faster and faster. It is the speed that does the repair work.
If you merely walk for one hour it will do nothing to reverse your symptoms, but it is still good for you.
If you keep a written record of each walk you will see the proof of your efforts. I started walking in 1994 and my time per kilometre was over ten and a half minutes. After only four months it had improved to less than nine minutes, and that was at the age of sixty. Four years later it was down to less than six and three quarter minutes. How was that for a man of 64?
Good luck!
apdaparkinson@aoic.net
This disease is very different from anything I have ever had. It's not like an infection where you start feeling relief a couple of days after starting antibiotics. You have to give the medication a chance. After that it becomes necessary to find the right dose and schedule. This was my toughest obstacle and the one that most PWP (people with Parkinson's) endure.
I have been through the yes you do have PK to no you do not have PK
At the beginning in 2012 they immediately put me on Sinemet and it worked wonders. I am do not look like I have it. Then I decided maybe the Sinemet was not working and went to a new Dr in 2015 who did a DAT scan. This doctor immediately said I did not have PK and told me to get off. So I quit.. That lasted about 6 weeks and then I took it up on my own and went back to my old Dr. and back on the Sinemet.
Now I ever felt that much better, but last Dec I had a big bout with pneumonia and also had one 11 months before that. I was so sick, and I never knew why. I have had 2 more this year and we are only 4 months into the year. After the last December bout, I quit all my drugs including my supplements. I ended up only taking a Synthroid and a sleeping pill and that was it. Now after my bout last week with this lung crap, I am back on more of my supplements. I am seriously afraid to get back on any of these PK drugs as I seem to be overly impulsive, and more and more each month that goes by. Yet I just do not want to move...I am like almost frozen and it takes a lot of thought just to get anything done. I am OCD like with my computer and food! Coming off another big dose of Prednisone now. Cannot sleep. Do not know where to turn. I have a Doctor for each thing but they are not interested what the others are doing for me. It is awful so I keep reading and reading and trying to figure all this out myself.
Thanks for listening here.
I feel for all of you..
in reply to Herz
Do you feel better with or without the meds??
Herz in reply to
Well, I think would love to be like I was 20 years ago and that was when I thought nothing about cooking, gardening, housework, just moving was not a thought. Now it is like a mind game. I feel I am in need of an ON switch.. I am thinking about trying out a newer antidepressant. Currently I am not taking any. I have a months worth of Latuda samples sitting right here. But just not sure I want to do this. Come to find out after all these years is that with genetic testing that I am allergic to SSRI,s. So that is why nothing ever seemed to help much. But they were very hard to get off of. I just last week sent in for a last Genetic test deal that is supposed to determine what might work for me. So this is part of my hold up. Why take something that might not even be recommended.
At 67, I realize that if I do something, it will take longer than it used to and it will hurt more but I have to keep doing it
One suggested ON switch, Stuck on Pause
pdrecovery.org/wp-content/u...
working with my acupuncturist on this
been on sinemet or 6 years, transitioning to mucana
stay tuned
Love > hate
Sorry, I can not tell. I can say I do not feel good especially not coming off the Prednisone. Actually my ankles are trying to curl up as I speak. It get worse when I come off the meds I noticed. Like giant charley horses and you need to stand in order to get them straight. It is not both at the same time. so maybe I need the Sinemet now.
Hi. I've got a similar form of morbus Parkinson, extreme slow movement, stiffness up and down the back. There are moments of relief and other moments of total deprivation, and it's been going on approx. 7/8 years now. No actual tremor except at end of medication, my torso trembles. At worse times, the illness manifests in my inability to move my extremities. Fingers and feet stop, can't command. Even sitting becomes a task. While on my medication (when it's working) I can go for a walk well enough a good 45 minutes, wondering the whole time how that's possible.
I read your entry and the comments. One thing stuck out. You can experience some extremely disabling symptoms IF you have the right drugs, but the wrong dose. Especially, with Ldopa. I am an experienced Parkinson's stubborn avoider of medications. I have curbed so often the proper dose, and it has only resulted in more frustration and anxiety and unessesary struggle. So, rather than avoiding a good result, make sure your doctor is at least prescribing enough and at the proper intervals. If there's a negative response at the onset of your Ldopa pill, check the strength and timing between dosage with your neurologist.
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