We had 21 replies from the post exploring this (How to stop treatment – The MS-Blog) and below is what you guys had to say. Note this is a very small sample size and isn’t generalisable to everyone who has stopped treatment.
Overall there was a mixed response to the psychological impact of stopping DMTs. While a substantial proportion of participants reported relief after discontinuation (around one third agreeing or strongly agreeing), anxiety remained common: about half reported feeling anxious or afraid of relapse, and many continued to worry about disease progression. Feelings of confidence in managing MS without treatment were limited, with most respondents feeling neutral or lacking confidence. Although most did not feel pressured or abandoned by their healthcare provider, perceptions of support after discontinuation were variable. Importantly, a minority reported worsening mental health, increased emotional distress, or mood swings, highlighting that stopping treatment can be psychologically challenging for some individuals.
The way our appointment systems are set up does not allow enough time to discuss this adequately. There is also limited access to psychological support and a dearth of guidance on this topic. We know how to start treatments and continue them ad nauseam, but not how to stop them.
Source: multiple-sclerosis-research.org