Can you have Parkinson's and be levodopa resistant?
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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@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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2 ReactionsThe 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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1 Reaction@southwest you may be a little impatient and should try longer with your medication
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1 Reaction@louismines
please elaborate
Thank you!
@southwest my doctor told me that it takes time for most of the medications to actually show a positive sign if you quit after just two weeks the medication does not have enough time to help in most cases
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1 Reaction@louismines
Thank you!
If you would be so kind to share, What length of time was needed for your body to adjust to meds? Are/were you on levodopa/carbodopa? Are you on multiple meds?
I discussed with my doctor, that the levodopa was in fact not just not helping me , but in fact making my symptoms much worse. He said he would not insist that I keep on taking drugs that were not helping. He did not want to get into trying agonists because he feels they have too many side effects.
We were both encouraged that rasagiline seemed to make some positive difference. Rasagiline is having no bad side effects for me, unfortunately it is not sufficient to mitigate my symptoms sufficiently. Above all my symptoms remain fatigue, weakness, and stiffness. Exercise helps quite a bit. As mentioned above I am now waiting to try apomorphine infusion when it becomes available.
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1 ReactionMy cardopa ladopa was started at 1/2 pill per day for two weeks then 1/2 pill per day twice daily then 2 weeks and 1 twice a day and three weeks and now three times a day and I take rivastigamine patches stepping up from 7.9 to 13.3 over a three month period it seems after getting up to one dose twice daily I really started seeing improvement in gait, speech, and not nearly at tired all the time overall inside of three months I am better but still with night tremors and shaking during the day. They tell me it takes time. Hope you are doing better and eventually be able to stabilize we can only follow directions and pray. I don’t fully understand what Parkinsons results are but may doctors indicate I should have years of positive results. Bless you and take care of yourself as well as possible
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4 Reactions@louismines
Good to hear you have found a regimen to manage your symptoms. Thank you for sharing your experience. Best of luck!