I have diagnoses of both anorexia nervosa and bipolar disorder, though I would have considered myself in remission from both of these in recent months and years.
Recently, I had to stop my antipsychotic (lurasidone), which I have been stable on for four years, because it went non-formulary in my CCG and I was told I wasn’t able to be prescribed it anymore. It’s the only antipsychotic of five that I’ve tolerated well and it helped my mood immeasurably. I am prescribed an antipsychotic, along with a mood stabiliser, to help manage my bipolar disorder, which I was diagnosed with in 2015. Due to having already tried a few different antipsychotics and it being advised I take one with a lower weight gain profile, I was changed over to amisulpride, an antipsychotic that I had not yet tried.
The reason it’s advised I am not prescribed anything with a high chance of weight gain is due to my recovery from anorexia, which I have been managing independently since being discharged from eating disorder services in 2021.
I am doing well in recovery but I absolutely do not profess to be recovered and I’m very much a work in progress. It would not take a huge amount to destabilise that I don’t think, and weight gain as a result of antipsychotic use was a previous cause of a significant relapse so I am anxious about it. I gave amisulpride a chance despite my anxieties and lo and behold, I have gained weight.
I feel so miserable about it all. My mood has also nosedived since changing medication irrespective of gaining weight – it just isn’t helping me stave off depression like my previous medication was. I am so frustrated about the whole situation. Trying to balance having bipolar disorder and staying well and having anorexia staying well is a minefield and I am honestly, incredibly tired of it at the moment.
How do you try to stay well in one area while knowing it will make another worse? I feel like that’s the choice services have left me with, and instead what has happened is I’ve now deteriorated in both. I am undeniably depressed and have been for weeks now, and my body image is now rock bottom after doing well to manage this for months. I feel in full panic mode about everything. If I don’t stop taking it, what if I gain more weight? If I do stop taking it what if I get more depressed, or possibly even manic again? What an awful choice to have to make. And worse, all this decision making was done with a GP, a pharmacist and a psychiatrist, none of whom have ever met me or discussed it with me.
So, I have decided that of both those choices, the sacrifice to my eating disorder recovery feels too high, and I am now stopping my antipsychotic. I am prepared to have a further relapse with my bipolar disorder and will cross that bridge when I come to it. In the meantime, the mental health nurse at my surgery is asking for them to appeal and re-prescribe me lurasidone, which was completely life changing in terms of the quality of life it gave me and impact it had on my stability.
I know a lot of you have asked about how I am around all of this at the moment and it’s too big of an update to share on socials, so this is where we are at.
Please keep your fingers crossed for me that something changes soon!
So sorry to hear this. It’s especially shameful that your doctors didn’t even discuss the change with you. I hope you get the solution you need. Try not to give up.hope.
Reblogged this on Disablities & Mental Health Issues.
I’m sorry. When ED is comorbid with other things, the ED almost always wins, at least in my experience.
I’ve refused medications that came with the risk of significant weight gain. At least you tried – that was more than I was willing to risk.
The early days of recovery are fragile and it doesn’t take much for us to feel unsteady.
I’m glad you’re pursuing the lurasidone again.
Be proud of yourself. You did some hard things. You spoke up. You prioritized yourself. Well done 💜
Thank you 💗
LikeLiked by 1 person
Goodness Cara, what a dilemma!! Drugs can be used off license, so I really don’t understand their reasoning when your bipolar and your anorexia were stable. It’s ludicrous. I really hope your appeal is successful.
Thank you. It’s not that it’s off license it’s non formulary which means something a little different but comes down to funding! Hopefully it will all work out.
I am so sorry you have been put in this position Cara. Sometimes there isn’t a perfect answer but here there is and you can’t have it which is just ridiculous. Surely the cost of a medication that keeps you in recovery is more cost effective than the risk of you slipping out of recovery?
I have been on quetiapine since mid 2019. I have no doubt it saved my life by giving me that bit of stability I needed to make steps forward. However the weight gain from it has been wild. My weight quite literally doubled in the first five ish months of taking it.
Now I am having a massive dilemma between how much the weight gain is impacting my physical and mental health versus the stability the medication has given me. My psychiatrist is sadly completely useless so I am just trying to figure things out on my own.
Sending you so many supportive vibes x
Cara, I’m so sorry to read this. Sending strength and support, I really do hope you are listened to and get the medication you so obviously need. It’s terrible the choice you’ve been forced to make! Please look after yourself xx
Thank you x
Such a nice blog and I appreciate your all efforts about your thoughts. It’s really good work. Diagnosed depression
LikeLiked by 1 person