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Can you have Parkinson's and be levodopa resistant?

Posted by southwest @southwest, Jan 25 10:31am

I have been diagnosed using DAT scan. My main symptoms are fatigue, and slowness of movement. Brain fog in parallel with the fatigue.
Levodopa/carbadopa "gold standard" in various forms, fast and slow release, did not help at all and made the symptoms worse. Amantadine gave me hallucinations and prevented sleep. Rasagiline seems to have helped a little. I have been cleared to try apomorphine infusion.
Back to the original question:why am I resistant to the go-to drug for PD (levodopa)? Can you have PD, and be resistant to any good effects of levodopa?

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methel | @methel | 3 days ago
In reply to @southwest "Many thanks for everyone's thoughtful comments. I saw my Parkinson's doc today. He says levodopa did..." + (show)
Profile picture for southwest @southwest

Many thanks for everyone's thoughtful comments.

I saw my Parkinson's doc today. He says levodopa did not help reduce my PD symptoms because i was never able to tolerate more than small doses. The side effects ruled out that I could get a dose large enough to be effective.

Rasagaline seems to have helped. I had a few of my lowest fatigue, least stiff days starting 3-4 weeks after beginning rasagiline. He says this demonstrates that I would benefit from more levodopa, the problem is how to get it onto my brain. Rasagiline seems to have helped, but the effect is not consistent day to day.

It feels to me as if rasagaline allowed my body to spare enough dopamine so that I can have a few more "on" days than before. There is also the chance that the rasagiline my be more effective the longer I take it. My doc believes a drug like apomorphine could be helpful to me, as an infusion it would be delivered to my bloodstream for up to 16 hours daily. There may be side effects that make it impractical, but I won't know until I try it. It looks a little complicated to set up daily, but I really need something that works better than what I have tried so far.

He says, not to diminish my symptoms, but that my Parkinson's symptoms are relatively mild, although also intrusive enough to keep me from being active consistently day to day. My symptoms being mild was why he prescribed the DAT scan. He does not think I have symptoms that would justify diagnosing me with a Parkinson Plus illness.

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@southwest
I am encouraged to hear that your doctor has considered the Parkinson’s plus diseases and thinks that your symptoms do not match those diseases. Of course, it’s your decision, but to me, they sound like a doc who has some plausible explanations and treatment recommendations.

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southwest | @southwest | 3 days ago

The doctor explained that I do not have PD plus symptoms in his opinion. And since the plus illnesses occur far less often than PD, it made more sense to fully pursue a PD diagnosis before getting into the plus illnesses.
He also said that the drugs and treatments used for the plus illnesses were basically the same as the PD treatments, just less effective on PD plus than PD.
We are encouraged that I seem to be getting benefit from the dopamine sparing action of rasagiline. I just feel a little better, more clear headed and less exhausted at the end of the day, on most days. Also rasagiline is giving me no side effects problems.
It took some thinking to understand the doctor's explanation that I apparently have a sensitivity to levodopa that augments the fatigue/weakness/stiffness that I have from PD. Even in the lowest doses of levodopa it takes my symptoms and makes them much worse, and I actually start to feel better as the levodopa degrades. So I cannot take enough levodopa to help, an "effective dose", because I would only be more overwhelmed by the symptoms.
Really keeping my fingers crossed for the apomorhine infusion.

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louismines | @louismines | 21 hours ago
In reply to @southwest "My parkinsons doc is a MDS. In his opinion the DAT scan results are sufficient to..." + (show)
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My parkinsons doc is a MDS. In his opinion the DAT scan results are sufficient to prove I have PD. I tried the various formulations of levodopa for up to 2 weeks, never a hint of feeling any better, but symptoms would get worse, then lessen as the levodopa wore off.

The most I can recall him saying in explanation was that some people with PD just don't get help from levodopa. Next in line would be an onapgo (apomorphine) infusion system, which looks daunting to me, but if it can get some of my life back for me, and not have too many side effects, I will use it.

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@southwest you may be a little impatient and should try longer with your medication

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southwest | @southwest | 8 hours ago
In reply to @louismines "@southwest you may be a little impatient and should try longer with your medication" + (show)
Profile picture for louismines @louismines

@southwest you may be a little impatient and should try longer with your medication

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@louismines
please elaborate
Thank you!

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