I’ve tried the alternative route but it is not working for me unfortunately. Going to neurologist in a couple of days. Want to start with something that has the least side effects if there’s such an option. What do you recommend from your experience? I am deathly afraid of meds but I can barely walk a block. Many thanks in advance for your guidance.
Which PD med is best to start with? - Parkinson's Movement
One question which may or may not be helpful is How old are you?
I would choose some form of time-released levodopa - carbidopa levodopa ER, Sinemet CR, Madopar HBS, Stalevo, or Rytary. The MAO-B inhibitors don't do any harm but in my experience do not do very much either - Azilect, selegiline. In my opinion the dopamine agonists are best reserved for when levodopa is maxed out as they are associated with severe adverse effects - ropinirole, pramipexole etc. There are many of these. Complete list here: en.wikipedia.org/wiki/Dopam...
Hi Park Bear - how long do I have on C/L before they are maxed out roughly?
That is highly variable and individual. I am likely one of the better cases - 6 years after diagnosis I am still taking a low dose. I do many non prescription interventions including high dose thiamine Roy mentions below.
The dopamine agonists are favoured by many neurologist as a first treatment because they are often well tolerated and convenient. All drugs have side effects. Effective drugs often have serious ones. But not for everyone. So drug choices like drug authorizations are a balance of side effects against therapeutic effects. Pramipexole, for example has potentially the serious side effect of inducing compulsive behaviours. It's incidence is between 1 in 100 and 1 in 1000. If you are one of those affected you need to stop the medication and find something else. If, like Pmmargo and myself and many others you are in the 99 to 999 group you can potentially enjoy the benefit and put up with some of the minor side effects like somnolence which do affect you.It's a balancing act
Dopamine agonist serious adverse effects are much more common than that and can be devastating. This includes pramipexole.
Impulse control disorders: jamanetwork.com/journals/ja... " Impulse control disorders were more common in patients treated with a dopamine agonist than in patients not taking a dopamine agonist (17.1% vs 6.9%; odds ratio [OR], 2.72; 95% confidence interval [CI], 2.08-3.54; P_.001)....nearly all patients treated with dopamine agonists were taking either pramipexole or ropinirole,"
Autonomic failure of postural blood pressure control (orthostatic hypotension and supine hypotension). PD patients can have their lives ruined by this if the OH is wrongly attributed to the PD instead. jamanetwork.com/journals/ja...
Acute Orthostatic Hypotension When Starting Dopamine Agonists in Parkinson's Disease: "Ten subjects (34%) met the criteria for acute OH. There was no evidence that OH was related to the use of a specific dopamine agonist or the concurrent use of levodopa"
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Your neurologist will, most likely, want to you to start on an agonist or carbidopa/levodopa immediate release (c/l IR) which is the generic for Sinemet. This is if you are in the US. I respectfully disagree with park_bear about starting on a controlled or extended release version of c/l because you can experience lag times and it can be unpredictable. For me it is far easier to judge effectiveness with the IR. My experience was that starting c/l was life-changing in a positive way. I am one of the unlucky minority with dyskinesia almost from the start which can be pretty miserable, BUT I am still more functional with it than without. Agonists did nothing for me on their own but I am willing to consider combining one of the newer ones with c/l in the future as things progress to determine if there is a benefit. FWIW.
Dyskinesia is due to the high peak plasma value of levodopa from the immediate release formulation. This is exactly why I recommend time-release formulations.
I write from my personal experience and my dyskinesia and on times are less predictable with CR/ER c/l and Rytary.
We all know you always push for long acting sinemet and are anti agonists PB.
I totally agree with Julie. She gives a well reasoned point of view, avoiding hype and not pushing any particular favourite idea.
SNS i suspect because you are quite debilitated now you will be started on some version of levadopa. Only a small amount will make a huge difference I think and you’ll be wondering why you waited so long.
Julie is certainly entitled post her personal experience and I support that as providing useful diversity to this discussion.
Likewise I am entitled post my personal experience and supporting research.
If your reference to "hype" is intended to apply to me please identify what you referring to.
My neurologist not keen on slow release as you lose 30% of the effect apparently. He only recommends it for night time.
I have heard the same and have no reason to disagree. However, a small increase in nominal dosage is a small price to pay to avoid dyskinesia and to obtain a longer on time.
My neurologist has very set ideas! I have some extended release which I’ve been experimenting with.
How do you take it?
I’ve had PD much the same time as you and I feel I’m now taking quite a lot of meds.
Total of 600mg madapor as well as axilect and pramipexole.
Do you chew it?
I had severe headaches on IR C/L , the change to CR got rid of the headaches as it did not allow the dosage to go over the max my head could tolerate, like P. Bear said
My husband was just diagnosed in June. He like you was deathly afraid of the meds as well. We started him on RoyProp’s vitamin B1 thiamine hcl. He was doing well with this until mid November. By early December he couldn’t feed himself, shower, get up from bed or chair, etc... We had scheduled a first neurological appointment for Jan 29th to discuss possible prescription program. It had gotten to where my husband could not sleep for any longer than one hour at a time. He also was so restless he would have to walk endlessly around our house. I decided I had to start calling every day to see if there were any dr. appointment cancellations. By the 2nd day of me calling we were worked in to see the Dr. that day. He started taking sinemet 25-100. He was able to feed himself after the first full day of meds. He is now fully functioning to where he was before this took a turn. He is still supplementing with the Vitamin B1. All I can say is I am so thankful to have my husband back.
Oh and he has not had any negative issues yet.
is Sinemet extended release C/L? How much B1?
Sinemet comes in both immediate release and controlled-release formulations. Sinemet IR versus Sinemet CR.
He is on the immediate release. He has been on this for 3 weeks now. He was totally dependent on me for basically everything from feeding him to drying him from the shower, etc... Today he told our neighbor that he is 1000% better than he was 3 weeks ago. It is the truth, it is truly amazing from where we were 1 month ago.
I'm glad medication has helped your husband. Do you mind telling me how old he is?
He is 52. I asked the same question. 😀
He takes one 500 mg Solgar B1 around 6:00 am and one more 500 mg B1 around noon. His bottle of sinemet just says sinemet 25-100. He just started taking 1.5 pill at 7:00 am, 11:00 am, 3:00 pm, and then 7:00 pm.
I started at 52 as well. To be honest your neuro will have his favourites which he will put you on. Probably azilect and maybe a low dose of sinamet/madapor.If you are lucky they will work for you and life will become basically normal for a good few years.
You will wish you’d started earlier.
Good luck. Let us know.
Neurologist put me on Azilect just like you said. I’ve been on it for two days. Symptoms seem to be better.
Another consideration might be feeling nauseous and vomiting from the IR version. CR made all the difference for me.
Two sub-threads seem to have developed in this thread: IR v CR, levodopa v agonists. I value the discussion in that it describes some of the different ways that different people react to similar therapies. I don't see it in terms of one treatment is better than another: "full stop". What matters for me is how do I and my doctors construct a regimen which best suits me, taking into account such things as my symptoms, progression, age, weight, cost etc.
Certainly make use of the theories, but don't forget the benefit of collecting data. Treat every day as a n of 1 trial.
Before you get involved in the medication route, which does nothing to slow down your disease progression, take a good look at the Fast Walking option. I have had Pd symptoms since 1963. I was diagnosed in 1992 and put on medication. In 1994, because I felt no improvement of my condition after using the medication for two years, I started the Fast Walking, which had been doing wonders for my late wife.I have not needed to take Pd medication since 2002 and at 86 I am still leading a very active life. firstname.lastname@example.org. Contact me!
Sending email now
All very well and good, but do keep the appointment with the neurologist ✨👍🏼✨
...and even after keeping the appointment there are other options available on the dopa replacement or dopa enhancement regime your neurologist is going to suggest.
For instance my spouse successfully replaced her ‘Sinemet’ (cardidopa/levadopa) prescription with non-prescription ‘DopaBoost’ formulation from ‘Designs for Health’
The ‘gold standard’ in PD therapy - ‘Sinemet’, makes her sleepy in the middle of the day. She also complained of tiredness over the one year of use before switching to ‘DopaBoost’.
‘DopaBoost’ is a no-fiddle Manuca/Levadopa combo that is quite powerful. We currently use three capsules a day which works out to a one for one replacement for Sinemet 25/100 (Carbidopa 25mg/Levodopa 100mg) recommended by the neurologist.
So here is another option -
Do check the Patient Education & Clinical Research information provided.
The product is available on Amazon, USA.
Hi Casey - What symptoms was your wife having? Did DopaBoost resolve her symptoms?
Neither Sinemet or DopaBoost would ever resolve all your symptoms - they mostly allow you to cope.
The last straw was a trembling fit that lasted over a minute. She was still in denial about the disease so the visit to the neurologist was important.
I can still remember the look of astonishment on her face after the neurologist told her she was doing fine but handed her a prescription for a bottle of Sinemet- 100 pills and monthly refills. Her only persistent problem then was the way she held her hand and a rather ‘gingerly’ walk.
The fits have not come back - probably due to a dietary change: more vegetables less carbohydrates and sugary stuff. But this disease is relentless - she is slowing down. Bradykinesia. Trying to optimize the Dopa intake at present: rigidly timing the intake away from meals.
So you need the Dopa to operate - my wife still works. No Dopa, no options. You cannot even exercise. And this is key.
But you also need a sense of what is driving the disease: oxidative stress, microglial activation, mitochondrial dysfunction, redox-imbalance, protein aggregation, environmental toxins, the gut-brain connection. Have your pick(s) and choose the nutraceuticals that you believe would make a fateful intervention.
And I dare add, use them at pharmaceutical doses. For instance I am targeting Melatonin at 70mg per night as per chartist.
These are the options as I see them. Do not deny your reality 🎯
I asked my neurologist which medication would improve my walking the most when I decided to start medication. His answer was Sinemet. I had no desire to take dopamine agonists due to the side effects so I’m glad that was the answer.
Did Sinemet help with your walking? It is my dream to be able to walk a few miles again.
Yes it did at first although I had dystonia in my ankle that never disappeared with Sinemet but that is a rare symptom. I’ve been on Sinemet about 11 years and in the last couple of years it wasn’t helpmuch so I had Focused Ultrasound and can walk normally again for the first time in 20 years.
The key benefit of levodopa is relief of motor impairment, be it Sinemet or whatever form you choose to take. Some people belittle it as "only" symptom relief, but symptom relief is very important.
I agree symptom relief is a major component for the patient and also for the caregiver.
So I was started on Rasagiline 1mg once daily. Took first dose yesterday. Does anyone know how long I need to take it before seeing a benefit or symptoms alleviating?
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