Can taking Sinemet when not needed cause PSP-like symptoms?

[Lexilover24]

Hi everyone. We're in the UK. My mother in-law, at 81, was admitted to hospital in the summer of 2022 with a fall, as a result of extreme dehydration.

She had been suffering many of the usual aging problems, CKD, obesity, hypertension etc and also a left hand tremor. During her stay she was treated for a UTI , and given lots of tests and also suffered Delerium.

She was given her 'routine' medication, Sinemet, for her Parkinson's Disease? She'd never been treated for this before? She'd never been tested for PD before?

To cut a long story short, she is now in a Residential Home, 'diagnosed' ( without appropriate scans) in January 2024 with PSP ? The rest is similar to all your experiences. However, her tremor is an Essential Tremor, only shaking when she uses her hands, but not at rest , as with PD? So should she actually be on PD tablets? Perhaps these are making her feel ' out of it '? We have little or no support from Drs, but the Home are brilliant with her.

Could these tablets be the cause of her decline, she's not been the same since she's been put on them? Her health has greatly improved in every other way. If only we could get her speaking again and moving again? She's even gone back onto soft food instead of purée . I thought once people were on a decline, they wouldn't improve?

Any thoughts, any questions, I'd love to hear from you?! Thank you in advance for your time.

[Zerachiel]

Hi

Here is a paper that links ET to PSP

ncbi.nlm.nih.gov/pmc/articl...

With PSP, when the body is under stress or trauma like having an infection the PSP symptoms can increase and new ones appear; after the infection or trauma has cleared these new PSP symptoms can then start to go away although you will find that you don't get back to where you was before the trauma or infection.

Sinemet (levodopa and carbidopa) is usually prescribed to see if the PSP variant is responsive to the drug, usually if there is no improvement the drug is discontinued, gradually.

[Lexilover24 in reply to Zerachiel]

Thanks for your helpful reply. It makes sense to why my mother-in-law seems to go up and down in her abilities. Unfortunately we don't have POA for her care, so it is very difficult to change / stop medication or even have input. The Consultant said he didn't expect her to be here in a year, and has left everything to the local GPs and the home. She's actually doing quite well and I'm hoping he's very wrong! Thanks again.

[Bergenser]

Completely support what Zerachiel says. PSP is never a 100% certain diagnosis, but it sounds like your mother-in-law is getting good care. With no effective treatment or cure, there may be little to gain from further tests and scans.

If you are concerned about side effects of Sinemet, please check the NHS advice. nhs.uk/medicines/co-careldo...

The medication can be stopped if your mother-in-law doesn't feel any benefit from it.

The one thing that strikes me is that long term vitamin B1 deficiency can cause some symptoms that are similar to PSP. Presumably it's been checked, but no harm in asking if she needs supplements.

Hopeful that the improvements you're seeing will last a long time. 🫂🌻

[Lexilover24]

Many thanks for your kind reply.Unfortunately we don't have POA for her care and the Consultant has left everything in the hands of the local GPs and the home, since he didn't expect my mother in law to live more than a year after seeing him? Therefore changing or stopping medication is not really up to us.

But interesting what you said about vitamin B1. We also stumbled on this and have mentioned it to the Nurse Practitioner who visits the homes on behalf of the Drs.

Sadly they won't test for this ( more for long term alcoholics, they said) but allow us to give her some. We've tried soluble tablets, sub lingual tablets and also drops. No definite result, possibly not enough, but we're not Drs ?!

Thanks again for your time.

[Kelmisty in reply to Lexilover24]

Who had POA? You need to apply for these health and wealth as they are necessary.

Mums on Sinemet, has been for about a year now, she’s also got PSP & CBD it helps her symptoms slightly.

A good consultant doesn’t need a scan to diagnosis this. Mums didn’t, they just scanned to confirm.

[Lexilover24 in reply to Kelmisty]

Thank you! It took 5 months to get the financial POA and by then , mum in law's health had gone downhill so quickly. We had not accounted for that. Appreciate your help though.

[LittleOllie]

Ask for a second opinion

[Lexilover24]

Thank you. Definitely worth thinking about.