if you truly feel you're stable it may or may not be worth staying on it. some people who have been on it for years end up with permanent problems while off it and some don't, though typically restarting the medication seems to resolve issues related to coming off of it, at least as i have seen, and it in other cases it seems that the brain is able to repair itself somewhat and lingering symptoms disappear after a few years. duration of time taking the medication and duration of time taken to come off of it seem to play the most obvious roles in how well the taper process goes, but for the most part it's information we simply don't have.
this said i think it's definitely worth looking at the long list of problems that people have reported on snris and comparing it to what you're dealing with now. it is absolutely horrifying how many things i considered "part of my genetic conditions" until i read more about the possible side effects and realized that some things might be worsened by or even created by being on duloxetine for 14 years. (for brief context, i have severe mast cell activation syndrome/hypermobile eds/polycystic metabolic ovarian syndrome/advanced small fiber neuropathy/hyperadrenergic pots; duloxetine was prescribed to treat severe muscle and nerve pain from a misdiagnosis of fibromyalgia.)
if you do want to try coming off of it, my partner was able to safely taper off a year of taking 30 mg duloxetine by using the counting method documented here. it took about six months on a taper of 15% whenever he felt stable on the new dose. my partner still has a permanent metabolic disorder and his epilepsy is significantly more disabling than it was before duloxetine but he is functional these days, which he was not while on duloxetine due to worsened daily seizures/epileptiform discharges + akithisia.
i hand-counted and separated the beads in each capsule myself for an hour to an hour and a half at a time while listening to music with about $10 in materials (empty capsules, tweezers, pill sorting platform) though in retrospect i'll want a tiny funnel when i do mine, and if you have trouble sitting up, bending over a small task, seeing small things, counting things, or making small movements, it may be more or less difficult or impossible and you may need to ask for help. i do have all those problems and was still able to do it on good days from bed with my overbed table. it helped to count aloud and have someone listening to my counting. i did also have someone else check my math each time we decreased the dose since i have dyscalculia.
personally, i am still going to try coming off of it, to see if i can improve my severe heat intolerance, blurry vision, brain fog, fatigue, tremor, constipation, dry mouth/dry eye, paresthesias, sexual dysfunction, and urinary dysfunction. it's even possible it will help with arthralgia, which is funny given it was prescribed for fibromyaigia. mcas, heds, and small fiber neuropathy are definitely involved in all of the things on that list, but i can't rule out that duloxetine is playing a part (and i 100% think my anorgasmia and severe vulvodynia specifically are both duloxetine issues and not something else). i don't know how much i care about this but i am interested to see if it will return to me the ability to have emotions other than anger and possessiveness, i am the kind of autist who didn't really have emotions in childhood either though so i'm not expecting much here
i may or may not be able to actually tolerate not being on it, but we won't know until we try. i will be taking it much, much slower than my partner did and will probably only remove 1-2 beads at a time, i'm expecting the taper process to take multiple years, and i'm not doing it until i'm more stable on my mast cell meds, which appears to be coming sooner than i thought.
i'd also like to have additional "easing suffering" options before i try a taper, i haven't been able to try cbd before due to #MyAbusivePainManagementDoctor but he is gone forever now so i'm going to give that a shot and see if it's a viable option. when my partner was having Frank And Intolerable Withdrawal Symptoms during his taper we would have him take a bit more medication, but when he just felt kind of shitty cbd+thc were lifesaving to just lighten the load a bit. having something like that seems incredibly important while trying to do a taper like this. i don't think it necessarily has to be pharmaceutical but often pharmaceutical is the only option we have at this level of illness of course
i think you have the right idea in consulting this doctor as long as she is truly thinking critically about this stuff (and as long as you're prepared for the fact that she might not be); psychiatrists who work with our populations can be genuinely progressive or just sort of wave their hands at it. without any real research into what is going on or how it's really affecting us on a population level, talking to people who have seen thousands and thousands of cases is really the only way we have to make educated guesses about whether or not it's worth the suffering of trying to taper off. we can simulate this in some ways by reading forums from people who stopped taking snris but i will give the medpros one thing, if you're able to think critically about it and work with patients as an advisor instead of gatekeeper/overlord, synthesizing clinical experience into advice is The way to guide clinical decisionmaking in the absence of meaningful research. this is the actual use case for doctors and always will be
at the risk of sounding like a Particular Kind Of Person, i do also want to mention that the glp-1 receptor agonists are showing genuinely incredible results in the venn diagram of people with these conditions (lc/mcas/heds/pmos/etc), many of whom are or have previously been on snris like duloxetine. i am not on one yet but am angling for it to treat my inflammatory mcas, and i am expecting it to do a LOT of work in resolving the otherwise permanent inflammatory-related metabolic disease that was the combined work of duloxetine, pmos, and hyperadrenergic pots. note that the rest of this post is actual advice but this bit about glp-1ras is just a gesture at "think about this, read about it, ask people about it" because i have not been on it myself yet and do not know your medical history beyond having read some of your posts. and of course taking a medication that is likely to affect the shape of your body is a deeply, deeply personal decision (in the same way taking any psychoactive medication that can give you a permanent metabolic disorder should be viewed).
i am really just trying to ask people in the venn diagram to look into it themselves when i can, because the preliminary research is just so good and most of us only hear that it's used for weight loss and may never have another opportunity to hear that it's probably the most powerful, broad-spectrum anti-inflammatory currently available to us, with none of the common potentially life-threatening or debilitating side effects of steroids.
hope this is helpful to you or anyone else; much love + solidarity + luck to you with whatever you decide!
adding also as a curiosity/additional information for those to whom this is relevant, an internal fda document from 2009 discussing evidence of a serious discontinuation syndrome specific to duloxetine and recommending an internal strategy for changing clinical knowledge and practice wrt discontinuing. this was removed from the fda website i believe around 2020. to my knowledge nothing ever came of it. i would love for an investigational reporter to follow up on it at some point
