Can you have Parkinson's and be levodopa resistant?

Yes, patients with Parkinson’s disease can become resistant to levodopa, either from the beginning of the onset or by developing reduced responsiveness over time. Resistance often happens as a result of disease progression, peripheral metabolic factors, or an misdiagnosis, such as atypical parkinsonism. Bacteria in the gut can prevent the metabolic breakdown of levodopa before it reaches the brain. Poor absorption or wrong dosage can also cause Levodopa not to be effective. My husband is on Ropinirole and low dose Tramadol for PD pain. Carbidopa levodopa caused problems for him too. Hopefully, you will find the right regimen for you. Remember, one pill doesn't always work for all!

@eojeda1
thank you!

Has your neurologist ruled out Multiple Systems Atrophy (MSA)? Parkinsons and MSA share many early symptoms, but MSA is resistant to Levodopa.

@bmfoster
thanks!

@southwest

There’s a whole group of rare Parkinson’s-like diseases which at the beginning are misdiagnosed as Parkinson’s, even initially by many neurologists. PSP Progressive supranuclear palsy is another one of these diseases. As I understand things, many of these diseases are resistant to the standard Parkinson’s drugs.

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.

@southwest - @hopeful33250 @radioactivems @bromy @anro @gregopp211 also may have some thoughts on whether some people diagnosed with Parkinson's may be levodopa resistant or may not get any improvement from it.

Hello @southwest,

I am sorry to hear that carbidopa/levodopa was not helpful for your symptoms. There are a lot of medications that can treat PD. Here is a listing of many of the drugs that can be used to treat PD. https://my.clevelandclinic.org/health/treatments/parkinsons-disease-medications

If you are uncomfortable with the "onapgo (apomorphine) infusion system," you might ask your movement disorder specialist if you can try one of these other medications first.

What symptoms are most bothersome to you right now?

@southwest

If I were facing this, I might get another opinion from an expert as to what might be happening. There are a number of the so-called Parkinsonism diseases which usually do not respond to levodopa. Some of them have other treatments and some don’t. Best wishes going forward.

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.