I was formally diagnosted 2 years ago, at at 43. I have predominantly rigidity, bradykinesia, and reduced movement in my right arm, and several other symptoms besides.
I haven't started taking medications yet.
I'm concerned about the possibility of dyskinesia, which is more likely to occur when people with Early Onset PD take levodopa. One study found that 70% of PwP who were diagnosed in their 40s developed dyskinesia within 5 years of starting levodopa.
Anyone have any experience with this? Any thoughts?
Thank you in advance for your replies.
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ElliotGreen
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My husband is now 67 and was diagnosed around your age. He has not developed dyskinesia. He has in the past used a lot of sinemet. Now he takes far less, only one dose a day and relies on Thiamine IM to help his symptoms and with amazing changes. When sinemet started to fail for him, it caused dreadful withdrawls, short and
iiregular on times, falls, strange shuffling and freezing amongst other things. Sleepiness was debilitating because he still works and he would fall asleep in meetings. It did work for many many years though and he led a pretty normal life with a fairly consistant pattern of deterioration.
Hi Janvan, if you search my name on here you will see several posts on my husbands parkinsons adventures. He started Thiamine IM in June, we halved it the the months proceeding and now he takes 3/4 of the vial. The improvement is remarkable. I have a happy smiling husband again.
Could you give me a little more information regarding Thiamine IM. Where to get it? My husband is struggling to keep awake at work and is still in his 50s. He could really use some help. I brought thiamine up at our last neurologist appointment. He did not indicate that this would produce any positive results.
Hi there, Your neurologist would not be aware of how Thiamine/B1 is helping people. There have been no funded studies so unless he has been enlightened about Dr Costantini and his work, he would have no idea. There is plenty of info on this forum about doses etc and you are best to research it here. If your husband is sleepy then you will probably find it is from Sinemet or similar. My husband only takes sinemet at night now so that he is awake through the day. He has 2 x per week(3/4) vial of Thiamine HCL. There are a few experts on this page that can help you more than me. Best you get advice from them. Kind regards and good luck
There is no clear evidence that starting meds earlier leads to dyskinesia. It’s more that as the body produces less dopamine the meds can’t fill the shortfall. You can google the Ghana study, and also something came out a week or so ago that was posted in this site.
I was also told by a neuro that the synapses need to be ‘bathed in dopamine’ otherwise they can give up (which is why smokers tend not to get PD).
My philosophy is to take the minimum meds to live a normal life as well as try various alternatives such as NAC and mannitol just in case. I’m almost 55.
My symptoms started at 48. I started carbidopa/levodopa (c/l) 5 years in. I had dyskinesia within four months on a very low dose. My mother has PD and was diagnosed in her 60s. She has dyskinesia now, but did not have it for many years while taking c/l. Young onset is known to have a higher incidence of dyskinesia as does being female and smaller in stature.
Thanks Julie. I made the effort to read a couple of your older posts about dyskinesia before I replied to you. I read the one that linked to the WebMD article and the one about dispelling myths.
May I ask you some questions?
Does the dyskinesia affect your whole body, or just part?
Does it just happen at peak times? How much of the day does it happen to you?
How unpleasant is it compared to symptoms of PD? Is it distressing or debilitating?
Thank you so much for your attention and thoughts.
I was diagnosed at 38, now 52. I've been taking Stilevo for probably 8 years. As effectiveness decreased, dose increased. Initially 3X/day to now 6X/day. Forced to retire at age 48. Recently enlightened with alternative therapy such as Thiamine, mannitol, CBD, etc. In one month my sleep has increased from 5hrs/day to 7. Life changing! While my "traditional" meds have been unchanged, my quality of life has increased substantially in just one month. Very different to be excited for what lies ahead.
I'm starting to understand that my sleep issues for the past decade (which have been getting worse) were probably a symptom of Parkinson's well before I was actually diagnosed.
I'm just a week into taking supplements like thiamine.
Would you be willing to describe what your current supplement regime entails?
Although I was not diagnosed until I was 57, my symptoms started around age 51 ( I had RLS and was put on pramipexole for it). As I developed rigidity in my right arm and loss of balance a few years later, I went to a neurologist, but wasn't diagnosed for a couple of years. I have been on Carbidopa-Levodopa for 8 years now with little dyskinesia or other side effects. I have been taking large amounts (1200 mg/day for five years, 1600mg for 4 mos) . I think reactions, side effects, and effectivity are somewhat individual , just as progression of symptoms are. Also, but have no research articles to back this up, just observation, those with PD for a number of years who exercise regularly appear to me to have less dyskinesia and rigidity (purely self observation and observing others at boxing, etc.).
I feel your pain! I was dx'd at age 48, 3 yrs ago- Tremor dominant (all body tremor) Felt extremely scared to start c/l due to dyskinesia risk, just started it last month. I have come to terms that DBS or focused ultrasound are in my future. Hopefully by then there will be improvements in pd treatments. In the meantime, get to that bucket list
Elliot - I began using mannitol last fall, I'd say October-November timeframe. I use it as a sweetener in my iced tea, consuming 30G of mannitol a day. I have noticed improvements in my balance, occasional ability to smell, and an overall reduction in rigity. The only side effect is gas/bloating, usually first thing in the morning. I introduced the Thiamine at the start of the new year. I started, at Dr. C's recommendation, on 1200MG/day split into a morning and evening dose of 600MG. I increased the dosage yesterday to 1800MG/day. I have had no known side effects from the Thiamine, and am known attempting to fine tune my dosage.
Congratulations on your symptom improvements with the use of mannitol and B-1! It sounds like a new life for you!
Regarding the gas/bloating related to the mannitol intake, some members have found relief from that unwanted side effect by adding alpha galactosidase with the mannitol. This is the other active component in the more expensive mannitol product called Syncolein and is also the active ingredient in Beano, an over the counter gas aid. It is much cheaper to use the Walmart house brand for Beano. Here are links to the three products :
I was 38 when diagnosed 6 months ago. Some of my symptoms sound same as yours, rigidity, bradykinesia, and stiffness/reduced movement in my right arm. In addition I had terrible anxiety, brain fog, and depression. I was put on c/l right away and after a couple of months started azilect. These drugs absolutely gave me my life back. So far no problems with dyskinesia. From what I understand of dyskinesia, I would much rather have dyskinesea than what I was going through before I started the medication.
ElliotGreen, Astra7 is correct. People who develop dyskinesia within 5 years of taking levodopa have developed it because the PD has progressed not because of the levadopa. The standard PD meds help to control the tremor which is the tip of the iceberg. The non motor symptoms and some motor symptoms continue. The earlier you start to fight back with PD, the better. If you choose not to take any meds at all, following the example of a famous Scot, then you are embracing PD and your progress to stage 5 will happen sooner rather than later. To my way of thinking, this is a foolish attitude but others are free to believe the opposite. Fighting back with PD also includes some changes to diet, and recognising the importance of healthy gut bacteria in helping to keep some of the non motor symptoms at bay. There may be many triggers for PD but recent research shows that the gut bacteria play a role, also stomach bacteria and digestion in the non motor symptoms. There are neurones in the gut that communicate with neurones in the brain via the vagus nerve. The idea is to take the smallest effective amount of medication for as long as you can, before increasing it, and to work upon improving your gut bacteria health at the same time. My aim is to postpone stage 5 for as long as possible, having seen examples on Youtube. I was diagnosed in Dec 2013/Jan 2014 and am still early stage one because I fight back.
Thank you very much for your reply. I greatly value the different opinions here, and the exchange of perspectives and information. I also value a level of respect and even comraderie even between people who disagree, because we are still facing the same kind of illness, and we are on a path of trying to figure things out.
You say "People who develop dyskinesia within 5 years of taking levodopa have developed it because the PD has progressed not because of the levadopa."
I get what you're saying, and I am familiar with at least some of the empirical evidence feeding into that perspective. I personally don't think it is as simple as this. The plain fact is that very few people develop dyskinesia unless they're taking levodopa medication. So levodopa must somehow be involved.
However, I know that people who delayed starting levodopa tend to develop dyskinesia faster when they do take it, so there is some progression of the disease that was not caused by levadopa.
Have you seen this recent and important article?
Dopamine oxidation mediates mitochondrial and lysosomal dysfunction in Parkinson’s disease.
It brings together four different areas of parkinsons disease etiology: oxidative stress, mitochondrial stress, build-up of alpha-synuclein protein, and problems with lysosomes (where cells break down waste). These problems contribute to and feed one another.
It says it right in the title: oxidized dopamine contributes to mitochondrial and lysosomal dysfunction. Now this requires 2 things to take place. First, there needs to be a problem with the system that deals with high levels of oxidization. Second, there needs to be a significant amount of free dopamine floating around.
DJ-1 is an antioxidant enzyme. When it is functioning, it seems to be a part of what helps convert free dopamine into non-toxic derivatives. But when DJ-1 is knocked out AND you have free dopamine around, you get oxidized dopamine which causes further damage.
Note that this isn't just unidirectional. Some people have genetic mutations that knock out DJ-1. They may get early onset PD. But another way DJ-1 can be harmed is that DJ-1 itself can be oxidized. See this older paper:
Oxidative Damage of DJ-1 Is Linked to Sporadic Parkinson and Alzheimer Diseases
Compromised DJ-1 contributes to toxic oxidation. Toxic oxidation can compromise DJ-1.
Now back to levodopa. The first paper I cited tells us this:
In mice, you don't see harm from oxidized dopamine even if DJ-1 is knocked out -- UNLESS you feed those mice levodopa. In human cells, there tends to be more dopamine in the system. Problems with oxidized dopamine more readily occur.
I don't think we have the definitive answer as to whether taking levadopa increases the amount of oxidized dopamine in humans. But I think it stands to reason that it might.
Hi Elliot. In answer to your question, "Any thoughts?" May I take your time and tell you that my first symptom started at age 29 and was followed by more than forty more, before I was finally diagnosed at the age of 59 because I was then shuffling.
I am pleased to hear that you don't take any medications yet. I am not against medication if that is the only way to deal with a health issue. With Pd, there is no medication that actually stops the progression of Pd and helps you to reduce the symptoms. The best they can do is to temporarily hide one or two of the symptoms for a short while. But the body gets used to any medication and, as a result , you have to take more and more of it. Then you get to the stage where it does not work at all. What do you do then?
What I did at age 61 was to start doing fast walking, in place of going to the gym for 90 minutes a day. Within 4 months I started to get better. My walking time improved from in excess of 10.5 minutes per K down to less than 9 minutes per K. It continued to get better and at age 67 I was able to come off Pd medication altogether and have not needed to go back on ever since.
If you would like to learn more about what I did etc. then look at my website and contact me - reverseparkinsons.net and I will help you, at no cost, to get better. Not everybody is willing to do what I did and therefore I cannot say it will happen to you. But as it costs nothing to walk fast, which does make you fitter, you cannot lose anything by trying.
Hi Elliot, I was diagnosed two years ago at 45. I am taking Azilect 1 mg as the neurologist says it MAY help to delay the progression of the disease. I’m relying on exercise as my primary defense, and using supplements such as mannitol, mucuna, high levels of B1 and other B vitamins. I’m doing OK, sometimes I’m afraid I’m getting worse, and then I’ll pick up my exercise regiment, do you some other therapies such as acupuncture and massage and now I’m doing light therapy and I have a PEMF pad which is supposed to increase circulation. It seems a lot of people go on medications, and then work to get off of them. I’m not into masking the symptoms, and everyone knows medications don’t help solve the problem. Hopefully there will be a breakthrough in the next year or two for all of us! Best wishes.
I stopped taking Azilect last week as I hope to be part of the SPARK trial for BIIB054 an antibody Which hopefully/supposedly attacks the alpha synculein protein clumps. I believe it’s an international trial. They are looking for people with in the first three years of diagnoses who aren’t taking medication. Do some research about it or ask your doctor. Maybe it’s a possibility for you too.
My husband’s symptoms started when he was 43 with loss of arm swing, gait disturbance, and loss of smell. He relied on amantadine and the neupro patch only for the first 8 years or so also worried about side effects from Levodopa.
He’s now 59 and over the last 4 years has been dealing with pretty substantial cognitive impairment. Was it caused by taking neupro for so long? We’ll never know. He took Rytary for about the last 5 years only.
Recently we discovered that with mannitol, he doesn’t really need or benefit from his PD meds. So he stopped neupro and rytary in January and relies on mannitol only.
It’s a long journey when you are diagnosed young, but have hope that there will be really good treatments before you have to worry too much about side effects!
And also try high dose thiamine or mannitol early.
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