When to start Madopar/LDopa?

[Marcomando]

I was dx just under two years ago (age 54) and have been on Rasagiline (Azilect) since. It doesn’t have a noticeable effect but there is a hope it might be beneficial in slowing progression...

I have some bradykinesia and a L side tremor but I’m ok and feel generally well.

I’m being encouraged to start on the drugs and if they help my bradykinesia that would be useful - if they stopped the tremor it would be brilliant but I know that doesn’t always happen.

However I’m naturally inclined to put off the medication as long as possible.

So does anyone have any insight into the pros and cons of starting (or delaying) medication?

Many thanks

Marc

[park_bear]

Levodopa in its various forms will not do you any harm and you can always quit without penalty. Opt for some controlled release version rather than immediate release. The idea that it accelerates the arrival of dyskinesias has been debunked.

[ion_ion in reply to park_bear]

park_bear, most of the articles claim the dyskinesia is a side effect of the levodoba long use. do you have a link to an article showing the opposite?

[park_bear in reply to ion_ion]

academic.oup.com/brain/arti...

"We conclude that motor fluctuations and dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose. Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified."

[Hidden in reply to park_bear]

dyskinesias associated with the duration of levodopa therapy, with longer disease duration and higher levodopa daily dose.

[park_bear in reply to Hidden]

Linked article debunks the first on your list.

[Hidden in reply to park_bear]

Not disputing, just that other side of the coin as published.

For example: In five years treatment, 40% will develop dyskinesia.

It's the worn out song: everyone is effected differently, from symptoms, treatment, to opinions.

[Hidden in reply to park_bear]

In agreement with other authors, we believe that the occurrence of the motor complications is related to the disease progression rather than to the duration of levodopa therapy (Cilia et al., 2014). The treatment with thiamine led to a significant improvement of PD symptoms: ..... The clinical motor improvement was even higher during the second month of treatment, after the increase of the dosage of thiamine associated with the increase of levodopa for the patients already in treatment with this drug, or after the beginning of the treatment with levodopa for the patients naïve for this therapy. The mean daily levodopa dose after two months was 515.0 ± 228.6 mg. Some patients with a milder phenotype had a complete clinical recovery. No patient experienced adverse events or discontinued the treatment

[Hidden in reply to Hidden]

Some reports have shown trinucleotide repeat expansions in the SCA2 gene in patients with levodopa-responsive parkinsonism. In addition, a number of factors link thiamine to PD. Recently a considerable improvement of motor and non-motor symptoms in patients affected by PD was observed with intramuscular daily doses of 100–200 mg of thiamine

[park_bear in reply to Hidden]

Astounding result: "Some patients with a milder phenotype had a complete clinical recovery. No patient experienced adverse events or discontinued the treatment." from " with i.m. 100 mg of thiamine twice a week"

link to this study: ncbi.nlm.nih.gov/pmc/articl...

Question for Royprop or anyone:

Can oral dosing be as effective and if so how much?

[Hidden in reply to park_bear]

(benfotiamine and allithiamine are oral substitute to Intramuscular injection) B1Benfotiamine is commonly taken at the oral dose of 300-600mg over the course of the day, usually in two divided doses with meals (150mg or 300mg twice daily).)

[park_bear in reply to Hidden]

I found a couple of references that say allithiamine is the way to go: "The two kinds of oral thiamine available on the Internet are benfotiamine and allithiamine. They are not equally effective. While thiamine levels increase rapidly in the blood and liver an hour or two after ingestion of benfotiamine, they don’t affect the brain. For tremors, allithiamine is the best form of oral thiamine to take.

After increasing my thiamine levels with injections twice a week for two months, I took 100 mg of oral allithiamine twice a day to keep my levels boosted. I found that this was sufficient to keep my tremors at bay most of the time "

[karlschmo in reply to park_bear]

Fixed link:

ncbi.nlm.nih.gov/pmc/articl...

park_bear, RoyProp, any opinions regarding Sulbutamine, evidently it is a more bioavailable version of thiamine... thoughts?

From wikipedia!: Sulbutiamine (brand name: Arcalion) is a synthetic derivative of thiamine (vitamin B1). As a dimer of two modified thiamine molecules, it is a lipophilic compound that crosses the blood–brain barrier more readily than thiamine and increases the levels of thiamine and thiamine phosphate esters in the brain.[1] Sulbutiamine was discovered in Japan in an effort to develop more useful thiamine derivatives since it was hoped that increasing the lipophilicity of thiamine would result in better pharmacokinetic properties.[2]

[park_bear in reply to karlschmo]

Fixed my link accordingly. Stray character was PD talking.

Interesting about Sulbutamine. Just put allithiamine on order. Will see how that goes or maybe get sulbutamine too and compare.

[Hidden in reply to karlschmo]

I will stay with benfotiamine and allithiamine

[Bailey_Texas]

Start yesterday don't put it off. There is no reason to delay.

[Hidden]

Dear Marc

I know how shocked you must be. I was diagnosed at 52 years of age. Initially I was prescribed Trihexyphenidyl which did help for six years, and I exercise. I started Madopar 2 years ago and my tremor responds well to it, unfortunately I now experience ‘off’ periods. I have also tried Sinimet the same dose but that is significantly less effective in controlling my tremor!!!!!

Please be aware that the effectiveness of Levodopa for all of us has a definite lifetime, however, some may benefit for many years for others like me two to three years. When your symptoms affect the quality of your life then perhaps the decision will be made for you. I wish you well.

Lovepug

[Jamielee1]

Your story is mine exactly except that I'm 37. I want to stay away as long as possible because I hear of the lifetime exoneration dates... have you considered the natural forms of ldopa? Also how often do you exercise and what forms?

[Marcomando]

Thanks. I suppose I was thinking that if Levodopa lasts say 5 years typically before its efficacy starts to wear off then the longer I could manage to last before starting it then the longer I have overall before it gets really crappy.

However I think the time has come to start it now as the tremor (in particular) is getting really awkward and the bradykinesia is affecting my ability to play music and do the things that I want to do.

[park_bear in reply to Marcomando]

Yes, if you are experiencing those sorts of symptoms give yourself a break and get some form of time-release levodopa.

Exercise is very important. Choose something you enjoy doing and keep at it. Rock scrambling is mine, but could be ballroom dancing, weight lifting, Rock Steady boxing, you name it.

[Hidden]

See my recent post, dyskinesia levadopa induced.

I say leave meds alone except for when. symptoms require.

Meds don't slow or prevent progression. Be aware, my neuro wants me to be on C/L simply to prevent falling. The Falling could result in subtle head injury, that unrecognized, lead to death.

I am reducing my dose of C/L until no longer taking.