Would anyone care to speculate why Levodopa carbidopa 100/25 - 3 x daily - taken 2 hrs after meals, only kicks in 2:30 hrs after swallowing and works only for about 30 min...
I have been taking it since mid Feb. A couple of days after starting, I got this new rigidity that looks like dystonia . This is different from my "regular" PD rigidity. Got the same when tried Levodopa in 2017. It had returned to normal after a couple of days when stopped Levodopa then. Was always afraid of it afterwards but my new neuro did not believe I got Levodopa induced dystonia and insisted I degenerate so quickly because I did not take medication. So I am giving Levodopa a chance since Feb.
After 2:30 hrs, Levodopa kicked in as a form of relaxation of my enlarged-flexed left thumb. It also gave me a bit less rigidity to affected shoulder and leg and a minuscule arm swing back.
These results only lasted for a couple of weeks. I am now left with this Levodopa induced dystonia and no benefit.
I have an appointement with neurologist next week and want to prepare. I would appreciate any comments you may have.
Note: I am on 200mg B1 since beginning of Feb. Dr C had me start with 2000mg last year, overdosed, half dosed, started again lower dose, again and again always overdosing until Dr C stopped answering me. Tried both oral and shots.
Symptoms started Oct 2016 at age 55. Important rigidity on all of left side of body. Haven't been able to walk more than 1 or 2 minutes at a time since then. Foot dragging, muscle weakness after any kind of activity. No tremor.
Thanks all
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Wow. That's a tough one. Well, my wild speculation is there is something in your diet, pharmaceuticals, supplement regime, (protein, B6) or body chemistry that is impairing absorption.
Taking it 2 hours after meals means, in theory, your stomach is empty and the food has been metabolized, but incomplete stomach emptying is not uncommon for PWP, so perhaps taking it 1st thing in the morning, and before any other supplements or pharmaceuticals, to ensure everything has been processed might tell you if it's one of the 1st 3 possibilities.
If you do that or have already done that and get the same results, then your body may have issues with levodopa. If you have experienced the same thing with other supplements and pharmaceuticals that you describe with B-1, maybe you're hypersensitive to exogenous stuff.
When your neurologist said, "... I degenerate so quickly because I did not take medication." that is exactly the same thing as saying PD pharmaceuticals are neuro-protective which even ignorant neurologist know is not true and were it me, I call him/her on it, but then I get a little uppity with doctors who want to punish me for not having blind faith in them or drugs.
Does the same thing happened with other PD drugs? Sometimes we respond quite differently to a drug after trying it a year or 2 later, i.e., no or bad reaction 1st time and some or better reaction 2nd time.
PS. Try going to the "ask the doctor" section at the Parkinson's Foundation. Dr. Okun, a well-known neurologist in leadership positions at the Foundation and the University of Florida, has answered 30,000 questions and I found will eventually answer yours.
While you're at it, also ask if it might be impaired methylation.
I think I may have found the answer to my problem:
"Diphasic Dystonia
Rarely, patients may exhibit a diphasic pattern of dystonia during both the “on” and “off” states. In this scenario, dystonia occurs when plasma dopamine levels are actually rising or falling rather than when they are at the trough or peak."
Now, I just have to deal with what you described so well as being "doctors who want to punish me for not having blind faith in them or drugs" as she will most likely not look into what a (ignorant) patient printed from the Internet... Wish me luck on this one...
Thank you and thanks to everyone else who answered my post.
Do you also have diabetes? Gastric emptying slows down if you have it and if you take any medications like Byetta, it slows it down even further.
You could try taking Hardy’s daily essential nutrients. It has all the vitamins in their forms that someone with methylation problems can use, plus minerals and other supplements too all in one product. My theory is that for some people once they start b1 they may run out of a different nutrient so can hit a roadblock until they have enough of everything the body needs.
Are you taking any b6? It is needed in lots of enzyme processes but the carbidopa in sinemet destroys it. Any supplements with b6 in them need to be taken well apart from sinemet. Again there are various forms and the synthetic ones can’t be used by the body in some people. Hardy’s has the bio active form.
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