Levodopa Phobia

[Farooqji]

An interesting tweet by Dr Okun, found worth sharing

The term ‘Levodopa Phobia,' do you know where it came from? Should we be more careful about how we apply this term? Should we be careful of applying labels to people and scenarios? Should we be considering the perspective of the person with Parkinson's as well as the clinician, when and if we choose to use this term? I loved reading the recent comments from

@X

following the long-term results of the LEAP trial which really underscored how we should 'be more careful about how the term should be applied.'

Key Points 2018

@Nature_NPJ

Nature Parkinson's Disease Journal Review by

@KRayChaudhuri1

:

- Levodopa phobia is under-recognized.

- The authors cite that there can be 'profound detrimental clinical complications if left to continue.'

- Several types of levodopa phobia.

- 'Fear of levodopa-induced dyskinesias, other gastrointestinal side effects and also the theoretical notion that levodopa may be toxic to dopaminergic neurons in the brain.'

- Importantly the authors point out that the condition can be underpinned by a 'sense of strong influence from the physicians or carers who are unwilling to prescribe or consider levodopa, and also high levels of anxiety or even impulsive compulsive traits in patients who have been influenced by available literature or social media-based information.'

- If unrecognized, the authors worry about preventable motor deterioration, muscle contractures, social isolation amd range of non-motor symptoms.

My take: I was humbled when reading the comments about the use of the term 'levodopa phobia' when I posted on the recent De Bie and colleagues outcomes paper, which revealed no difference at 5 years in early vs. delayed use of levodopa (the LEAP study). We should always consider our choice in 'words and labels,' and we should take into consideration the 'point of view' of the person with Parkinson's disease when applying the term 'levodopa phobia.'

Here are a few articles (someone asked the history of term, which may go back to late 90's and Stan Fahn however precise origins are unclear and I will keep searching):

Historical appearance of the term in a title of a paper in 2005:

“Levodopa phobia”: A new iatrogenic cause of disability in Parkinson disease neurology.org/doi/10.1212/0...

Nice review: ‘Levodopa Phobia’: a review of a not uncommon and consequential phenomenon in

@Nature

Parkinson's Journal by

@KRayChaudhuri1

and colleagues nature.com/articles/s41531-....

The LEAP study 5 year results (may possibly impact discussions and shared decision making):

movementdisorders.onlinelib... #Parkinsons

@ParkinsonDotOrg

x.com/MichaelOkun/status/17...

[CuriousMe12]

Reading the above it sounds like the LEAP study compared people 5 year on levadopa with people 5 year off levodopa. But LEAP actually compares people 5 year on levadopa with people 4 year and 2 months also ON levadopa ?

[BeedieBird]

I follow on X and really admire Dr. Okun. Always posting sound, clinical reports that he will disagree or agree with without reservation and state why. Good stuff.

[gomelgo]

labels. suck. period.

[CuriousMe12 in reply to gomelgo]

Precisely