I have seen two neurologists. The first one diagnosed me with PD about 8 months ago. As my only motor symptom is weakness in my dominant hand and some rigidity, she did not recommend medication, only exercise as it is thought to be neuroprotective. She said the medications lose effectiveness over time and that it is better to wait on the medications until you have motor symptoms (tremors). She requested that I return in 6 months. In the interim, she retired. I saw a new neurologist recently and she said that what the previous neurologist had said represented "the old way of thinking about this" and that there was not really a downside to starting medications earlier. My symptoms have not progressed in the year since I began having them. The new neurologist was not advocating for me to take the medications, only that I should not avoid them if I felt I needed them. I have a question for those diagnosed with PD: Did you start medication before experiencing tremors? Do you feel there was a downside to doing so?
Medications for Parkinson's: I have seen... - Cure Parkinson's
Medications for Parkinson's
There is not consensus on this, i.e., whether or not to take drugs at the time of diagnosis or when symptoms interfere with you quality of life.
I have chosen the latter -- for a few reasons.
Thank you for the response. With mild symptoms, I have also chosen to not take the medications. I am considering trying nicotine gum, as I have noted in another thread. It does have neuroprotective properties. While there is no clinical proof and there is risk of addiction, I have read enough to want to give it a try. What do we have to slow progression?
Exercise hard every day. Take meds when your disease keeps you from exercising.
Not all people with Parkinson’s have tremors so in my opinion that is a completely useless metric. You may never develop tremors so I would seriously question the experience of the neurologist.
From my experience I understood that there are as many forms of Parkinson's disease and as many different therapies as there are neurologists who deal with them.... In the same year I had six neurological visits and obtained six different prescriptions for therapy.,.
I went 10 years after the diagnosis without taking any drugs, and in the first eight I was fine, I only had difficulty moving my right arm, but I did everything even riding the motorbike. So the experience is subjective. As far as mine is concerned, the advice I can give you is to delay taking drugs if you don't have problems with the symptoms and to always continue taking Physical activity regularly. Sorry for the bad English provided by the automatic translator....
You went 10 years after diagnosis without taking any medications? Did you just do exercise? What symptoms caused you to start taking medications?
Yes for ten years I did not take drugs, and I can say that for eight years I was well enough to not have major limitations in my normal life. Then I had a sudden worsening with significant movement difficulties and so after a while I decided to take drugs.
I’m. 6 yrs being diagnosed. I started on med straight away but stopped as they made me feel worse. I definitely wouldn’t start till u need to. I would look at taking mucana purines which is a natural product before starting on pd meds. The PD meds do have side affects. Some ppl find them helpful but they have had bad side effects for me.
Do you have a link to a mucuna product that's worked for you to recommend ?I'd like to try but there's so many it'd be easy to end up with a dodgy pick.
Mucuna can have the same side effects as conventional meds.
Psalmody, what bad side effects did you experience?
When I commenced Madopar I felt vague and it gave me severe diahorea. I took 3 years to discover it was the Madopar. I asked Neurologist and doctor and finally Naturopath suggested it could be Madopar so I changed to Kinson and diahorea stopped in a couple of days. I now use 1 x Mucana Purien (natural Levadopda) & 1/2 kinsom x 5 times a day and I have found that the best for me after many years of trial and error.
Don't take meds til needed. There is Mucuna Pruriens if needed. It really works. It is a way of keeping your dopamine levels up herbally. You might never get tremors
The levodopa in mucuna is identical to the levodopa in 'meds'.
Yes. The same colour when melted. I know it doesn't stop progression but my HWP has used it for 10 years and it is really useful to bring him 'on' and he was diagnosed 30 years ago and we are in Portugal on holiday as I write this.
I would like to try it but how do you know how much to take?
I have a half teaspoon measure because we use 100% organic powder but some people take capsules. I see you are in Uk. I buy Natures Root. Very good and reasonably priced.
Oh, I see - Nature's root is the company...
Yes. Excellent company. My husband has had PD 30 years at least. DBS 18 years ago. He has 2 Sinemet Plus and I give him 25ml, half teaspoon, from a proper spoon measure I bought on ebay. There is also a quarter spoon measure that came with it. I make up solutions of it in specimen bottles. I add diluted juice eg Ribena to make it taste better and shake it up. I make a few at a time and store in the fridge. We have tried doing without but always go back. It just makes his meds kick in quicker. Just recently he has asked me to give him a whole teaspoonful between doses to keep his dopamine levels up.I said we have been using it for 10 years but its is probably nearer 12. Different brands but Natures Best is the most reasonably priced and works.
Ydes I found Mucana works faster that meds.
But meds have all the other components of the bean stripped out which may be beneficial. Meds also have carbidopa or benserazide in them which depletes b6
I’ve never heard that Benserazide depletes B6, only Carbidopa. I’m not saying it doesn’t, just that I have never heard that.
Oh, sorry I may be wrong then but I assumed they work the same way. I will do some research and report back
Hi LAJ - “may” be beneficial, or may be worse, we just don’t know. I prefer to stick with levodopa/benzserazide, I know exactly what I’m getting
The speculation that the other 95% of the mucuna plant is somehow beneficial - nevermind sufficiently beneficial that it offsets all of the trials and tribulations associated with treating PD with mucuna (unreliable products, unreliable brain delivery) - has never been demonstrated in my recollection. As Cagey says below, the other 95% might actually be damaging.
While there is indeed some depletion of B6 caused by carbidopa (and benserazide), it is likely not to the extent that many believe. Do not let this phenomenon be a reason to refrain from C/L medication!
However, it can be dangerous if not corrected with a B6 supplement. It is important to take a limited dosage of B6, as overdosing can lead to similar problems. Due to the interdependence of B-vitamins, it is recommended to take a low-dose B-complex with natural or active forms. Regular testing of your B6 level is essential to determine the correct dosage and achieve the necessary balance.
Do you have a link to a mucuna product that's worked for you to recommend ?I'd like to try but there's so many it'd be easy to end up with a dodgy pick.
Natures Root. Excellent and reasonably priced. I have a half teaspoon measure that I use and put it in some diluted Ribena or similar.
If you function fairly normally why start medication at all? PD drugs are a tool. You use them to live a good possible life and preferably as limited as possible. So no pill too much, but certainly not too little, then you will deficit yourself. Your new neurologist seems to give you that space. 👌
Agreed. There’s no need to put off meds if you really need them, but minor symptoms can be managed.
hmmm...well, the purpose of Levodopa anyway is to relieve 'symptoms', not stop progression. So, I'd say if you don't have symptoms that interfere with your daily life, then why take the meds.
I avoided them for 5 year because 1 allow me to experiment with non pharma interventions without drugs clouding.
2 allows me to learn about the symptoms without drugs hiding them
3 Avoid possible side effects of drugs.
I now take the odd 50mg sinemet if in need of a boost. But still resisting full prescriptive doses.
I'm happy with how I've done it but if a more demanding life who knows
And regarding No 1’ what did you discover . What non pharma treatments/drugs helped? I would find it helpful to hear the results of your experiment.
My main non pharma is exercise: - walking, boxercise, cycling.
- singing
- attempts at a good night sleep is important.
- healthier eating. Vastly reduced alcohol...
I appreciate thàt if I still had to work, as a joiner, for example it would be more difficult.
There are meds that treat symptoms which you can wait on, and there are meds that may slow progression (Rasagiline) if taken soon after diagnosis. I fortunately was put on Rasagiline early and after 10 years, my progression has been fairly mild.
I highly recommend getting on Rasagiline ASAP.
Neuroprotective properties of Rasagaline are dubious according to recent studies.
movementdisorders.onlinelib... Maybe you are doing other things that are keeping you well.
Sorry.... I have been on Rasagiline for 10 years... since I was diagnosed... with minimal progression. I still walk without even a cane... can eat and dress and shower myself.... etc.
I take Carbo/Levodopa in addition... just the same 4 pills a day... for symptoms.
There are studies on both sides. I have heard it is important to get on it as soon as you are diagnosed. The further along you are, the less effect it has.
So many of our drugs have been thought to be disease modifying when first on the market. This includes sinemet, but none so far have been. Teva, the drug company that markets azilect did trials. I was like you at 10 years (but not at 15 yrs). There are some who have rapid progression and others who are stable for years. I think it depends on the genetic variant.
Teva conducted clinical trials attempting to prove that rasagiline did not just treat symptoms, but was a disease-modifying drug - that it actually prevented the death of the dopaminergic neurons that characterize Parkinson's disease and slowed disease progression. They conducted two clinical trials, called TEMPO and ADAGIO, to try to prove this. The FDA advisory committee rejected their claim in 2011, saying that the clinical trial results did not prove that rasagiline was neuroprotective. The main reason was that in one of the trials, the lower dose was effective at slowing progression, but the higher dose was not, and this made no sense in light of standard dose-response pharmacology.
I will re-phrase David HMTK ' s advise
Start a rigorous programme of exercise, go to a Gym regularily and push it. Build every muscle in your body especially stomach , legs and back. See many posts here that discuss exercise as a treatment, delaying tactic and a preparation.
When you find that the PD is interfering with your exercise or quality of life start a low dose of the prescribed medication. Investigate the use of B vitamins there are many posts on the subject. You will know when it is time. No prescribed PD medication that I know of has any preventive value but exercise does.
PS : not enough time to be sure that it actually is Parkinson's
is there’s med to increase energy for PD?
UM-Palmitoylethanolamide can slow down Parkinson's disease 2017
Questions from a confused person
Greetings
Tavapadon
