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I've been Googling for the effects of long-term usage of trientine as a treatment for Wilson's disease and could find none. My mom's had Wilson's disease for over 40 years now (she was diagnosed way too late, she had a clinical death before they could figure out what was wrong), and she's been using trientine dihydrochloride since she's severely allergic to penicillamine. Over the course of the last 5 years she has had a rather rapid onset with severe joint pain (especially in knees and hips), and her cartilage in those areas is determined to be nearly non-existent.

I've spent a lot of time researching the various effects of Wilson's disease so I doubt it's directly related to it, but rather the side-effects of medications she's been using.

If you could provide links to studies of side-effects of Trientine it'd really be helpful.

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Arthralgia is one of trientine dihydrochloride adverse effects

Mild adverse effects:

rash (unspecified) / Early / Incidence not known

arthralgia / Delayed / Incidence not known

pyrosis (heartburn) / Early / Incidence not known

abdominal pain / Early / Incidence not known

diarrhea / Early / Incidence not known

-Prescriber's digital reference/ PDR.net


"Unlike penicillamine, trientine hydrochloride is not recommended in cystinuria or rheumatoid arthritis."

"In 15 patients with rheumatoid arthritis, trientine hydrochloride was reported not to be effective in improving any clinical or biochemical parameter after 12 weeks of treatment." - dailymed.nlm.nih.gov


There is an ongoing study on this with regards to use of trientine hydrochloride vs penicillamine but unfortunately, the website is not updated with the result of the study.

P.S. Please consult your doctor

*Additional reads: pubchem.ncbi

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There is a review of this treatment by NICE and although they mention arthralgia, they don't mention arthritis. However, joint degeneration is rarely seen in Wilson disease, and there is also an osseomuscular presentation.

Based on the data we have it's unlikely that it's related to treatment, and speculating on the cause is off topic here.

https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-017-0818-1

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