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

[Farooqji]

Levodopa Phobia’ is under-recognised in Parkinson’s disease but can cause profound detrimental clinical complications if left to continue.

nature.com/articles/s41531-...

[wifeofparky]

Interesting study. I printed a copy for discussion in my support group

[pdpatient]

Great share and thank you.

Here is a summary of the key points from the article:

• Levodopa phobia is an underrecognized phenomenon in Parkinson's disease where patients develop an irrational fear of taking levodopa that can lead to clinical complications.

• Different types of levodopa phobia can be seen in practice, driven by fear of levodopa side effects, physician reluctance to prescribe it, or anxiety in patients.

• If left untreated, levodopa phobia can cause motor deterioration, contractures, social isolation, non-motor symptoms and impulse control disorders due to reliance on only dopamine agonists.

• Management of levodopa phobia is complex and requires a multidisciplinary approach including neuropsychological interventions to address misconceptions about levodopa therapy.

• Early recognition of levodopa phobia is important to avoid complications. Treatment may involve cognitive behavioral therapy, anxiolytics and engagement of neuropsychiatry teams if needed.

• Patient-based levodopa phobia can be classified as an anxiety disorder related to a specific phobia about taking levodopa. Physician-driven levodopa aversion is also possible.

• The prevalence of levodopa phobia is unknown globally. Conflcting information on social media and from physicians can reinforce levodopa phobia in patients.

• Possible complications of levodopa phobia include worsening motor state, non-motor symptoms and impulse control disorders related to overuse of dopamine.

[Farooqji in reply to pdpatient]

Thanks for taking time and summarising it for the members

[pdpatient in reply to Farooqji]

My pleasure.

[CuriousMe12 in reply to pdpatient]

You ommitted that - it appears to be Russian paper

-based on only 4 selective cases.

- Includes no none who is successfully getting by without it.

You also omitted that the intro is mainly about scepticism about levadopa v levadopa agonists.

[jimcaster]

Thank you for sharing this. Like many people on this site, I had Levodopa Phobia when first diagnosed. I was horrified by the prospect of having dyskinesia like Michael J. Fox...never thinking about the fact that Levodopa enabled him to live quite well with PD for decades. I still take a few supplements and wear my Wellred Coronet Duo every morning, but I know nothing, including B1, helps me nearly as much as Carbidopa Levodopa. I used to be angry that it's been the "gold standard" for more than 50 years. Now, I think that 50 year track record is powerful evidence of how effective it is.

[Alphasyn]

I am appalled by the framing of normal human skepticism as a new form of mental disorder or whatever 😡! Anyone that is diagnosed with PD should look into the history of levodopa and its pro's and cons. Just read the paper (how is that called?) that comes with the levodopa medication. I am not a doctor and I do use levodopa, but as every Parkinsonian has his/her 'own PD', there is not a one size fits all and there are possibly other ways to cope with early PD.

[LAJ12345 in reply to Alphasyn]

I agree, this is completely ridiculous and insulting and just reinforces my observation that they don’t know what they are doing.

Hubby had terrible reactions to levodopa. We started off with trust that the doctors knew what they were doing, and taking their advice to the letter. There was never any distrust of the drug until he was writhing around almost unable to breathe and trying to escape in the night to kill himself. To pass that off as a phobia is insane. This seems to be an article spread by drug companies who feel like they might lose some sales. Or doctors who are trying to justify their existence. It makes me so angry I could scream😤😤😤😤😤

[Farooqji in reply to LAJ12345]

I agree. Clinical trials in early PD demonstrate symptomatic benefit with levodopa/ carbidopa at dosages of 150–300 mg/day and a lower risk of dyskinesia with dosages <400 mg/day. Beyond this dose, many research articles as well as doctor's experience has proven that the levodopa causes dyskinesia. Levodopa has other many side effects which vary from person to person. The article has tried to present Levodopa as heavenly thing

[LAJ12345 in reply to Farooqji]

yes, hubby couldn’t do well without a very small amount of it now, although before he started taking it he was no worse . We were talked into it with the promise it would decrease his rigidity and it only ever made the rigidity worse. Now of course he can’t stop it again.

[RIVERFLOW in reply to LAJ12345]

I don’t know how far in the disease your husband is but I can confirm that it’s feasible to stop Levodopa. It’s not a walk in the park though but I feel much better now that I have completely stopped it. I was on 1000mg/day and that impressive dose was prescribed by my neurologist only 16 months after my diagnosis (he almost doubled the dose every 4 months). During that period, I had almost constant nausea (lost 25 pounds), dyskinesia and severe constipation. These are all well known side effects of Levodopa. I then decided to try to reduce my intake by 10-20% every 10 days. It took me several months but today I am med-free and I keep receiving compliments from people I see occasionaly on how good I now seem to feel. Of course tremor is more pronounced but not more often. Bradykinesia is back to what it was before diagnosis. Rigidity is quite the same. I took back a couple of pounds since nausea is gone. I got rid of dyskinesia and constipation.

As many have mentioned before, it’s personal to each one. In my own experience, I prefer tremor and slowness that Levodopa side effects that I personaly experienced. I’m not saying I will never go back to Levodopa but I will try to delay this moment as much as possible. Good luck everyone in your own journey!

[LAJ12345 in reply to RIVERFLOW]

I think we’ve hit the sweet spot with his using the 1/2 dose madopar ie 50/12.5. I don’t know why they start people on the double dose ones. Hubby has had it 5 years now and is now still fully mobile.

When they increased his dose he couldn’t even get onto his bed by himself and at one point couldn’t even pee without me having to hold it for him 😢. Now he goes off to bridge 4 times a week, unloads dishwasher, folds washing, and functions pretty well so less is definitely best for him.

He can now smell again, smiles all the time and has energy back.

[LAJ12345 in reply to RIVERFLOW]

have you ever tried clonazapam. Hubby takes a 0.5 mg cut into quarters over the day and that seems to be the thing that has helped him most.

[Bunny622023 in reply to Farooqji]

Don't you think it comes down again to each person is different though Farooqji. PD affects everyone so differently. Absolutely Levodopa in some people causes dyskinesias at higher doses, and also at lower doses.. Considering how long it has been around and how it has benefited so many - I'm glad my husband started taking it 8 years after dx. He takes a 'fairly high dose' nearly 2000mg a day, he's Young Onset PD. But he is lucky maybe that most things work well for him, except for gait - and that's not Levodopa's fault. Thank God he doesn't have to take an agonist anymore - for "him" it is 'wickedly evil'. I wish everyone luck with whatever they choose as a 'helper' for their symptoms. 🦊🐈 We love cats..

[CuriousMe12]

If they want to be derogatory to non levadopa users does the opposite apply ? Are others levadopa junkies?Don't divide this community by insulting one set. If you want to consume it then do so and if you don't then don't.

[Bunny622023 in reply to CuriousMe12]

Hear! Hear! Totally agree. This subject has come up before. It's preference to each person what they want to take and what suits them best.

[pdpatient in reply to Bunny622023]

Funny 😂 how on the mark you are. My own previous MDS called me a possible levodopa addict 😂🤔. I ran away from them as fast as I could.

[Ctime]

This is an interesting article for me mainly because if explains my MDS frustration when I tell them I really don't like Levadopa!

From the timing described in the article, I came to this disease after a lot of the prejudice subsided. I certainly did not know about some of the professional opposition.

I came to my own conclusions about levadopa because it did cause some significant nausea in titration and it made (makes) me feel anxious. It definitely helps with bradykinesia but the more I take the more irritating dyskinesia I have.

IMHO some of Levadopa "phobia" is levadopa aversion because, while it is proven and likely safe, it is still a strong medicine with real side effects.