Breaking the Rules
My regular readers know that I have a pretty firm rule that I do not discuss medications by name because I don’t want to discourage someone from taking a med that didn’t work for me, but might work for them. We are not all identical, biochemically speaking.
For the 8 years I’ve been writing this blog, I have stuck to this rule, but today is the day I’m breaking it. I need direction.
I’ve been taking Abilify successfully for a good number of years when the unthinkable happened. My insurer changed their formulary. My share of cost went from $6/month to over $300/month. Despite my pdoc’s insistence that we try to figure out how to pay for the drug, the answer was just plain no. There is no way we could afford it.
Why was I on Abilify? To be honest, I’ve been told why I take all my meds, but I can’t for the life of me remember. I know it’s an antipsychotic, and I guess it’s been successful for that because I haven’t had hallucinations for years. Despite the fun of seeing a donkey in my living room it’s probably for the best that he hasn’t been around for a while. I really do miss him. LOL
I know it’s used for depression also. Because I take so many meds for depression, I can’t say whether it helped or not. I mean, I know that no drug completely eradicates depression, and I assure you I get it plenty.
The odd thing is that one of the many side effects of Abilify is that it can cause seizures. Because I was having seizures regularly, my pdoc and my neurologist worked closely together to come up with psych meds that also reduce seizures. They hated each other, but they worked together and came to an agreement. How I came to taking anti-seizure meds, and seizure inducing meds, at the same time, I don’t know. I am fairly certain my pdoc likely did not tell my neurologist that he placed me on Abilify. Regardless, it’s been nearly a decades since I’ve had a seizure.
Then there’s weight gain. It seems that virtually all bipolar meds, and psych meds in general, have the weight gain side effect.
Enough about Abilify, since I don’t take it anymore.
To replace Abilify, my pdoc chose to replace it with Risperdal. Even though the two drugs are used to treat similar symptoms, my therapist was surprised at the choices. He said, they really aren’t the same drug. In fact, he said there really is no alternative for Abilify. I guess my pdoc had to come up with something, so he chose Risperdal.
I haven’t had any of the long list of side effects from Risperdal except for two biggies – Hunger and weight gain. As I said last week, hunger is the worst. I am hungry at all times despite how much I’ve eaten. I can’t eat enough. When I eat dinner, I’m still hungry If I eat something after dinner, I’m still hungry. I’m hungry from the minute I wake up to the minute I go to bed.
I’m not talking emotional hunger. We all know what it feels like to try to eat away our feelings, but that is not what this is. My stomach has become a bottomless pit. To make matters worse, the drug itself induces weight gain, even if you don’t get the hunger pains. I’m doomed.
For the most part, I haven’t gained weight since the change, but that’s because I exercise. I walk around 5 – 7 miles a day and I can’t lose weight. Not a pound. The exercise has simply helped me to maintain my current weight. I don’t want to maintain my current weight. I want to lose because I want a healthy, long life. Is it at all surprising that people with bipolar live 8 years less than the general population? I don’t want to add to that bleak statistic.
For many reasons I have been frustrated with my pdoc and am currently shopping for a new one. My therapist gave me a couple of suggestions. He named two pdocs he respects and who, he believed, accept Medicare. I did plenty of research and found they are respected in the community, but neither accepts Medicare. I’m still looking. In the meantime, I’m stuck with my current one, who I know will frown upon taking me off Risperdal.
There is something I have preached time and time again, and that is never to stop taking, or changing the dosage of a med without agreement from your pdoc. I’ve decided I’m breaking that rule.
I don’t know the side effects of stopping Risperdal cold turkey. I know it can cause a heart attack to stop many meds and I don’t want to chance it, so I’m weaning myself off slowly. Since I’m kind of between pdocs right now, I don’t see any other choice. I had an appointment with my pdoc today, but he had to cancel due to a family emergency, which means I won’t see him for another month. I’ll have to tell him after the fact.
So, I’ve been rambling here, and I guess what I’ve been trying to get is advice. I don’t like doing it because of the differences in our bodies chemistry, but I’d like to know if any of you are taking another med as an alternative to Abilify or Risperdal? When I get my knew pdoc, my hope is he’ll help me reduce the meds I take each day, but I’m not willing to wait until I see him to get off this one.
22 comments on Medications
I’m afraid I can’t help but I can be moral support! You will make the right choice, I know that.
Thank you, Pam
Brad, have you looked on-line for prices? I don’t have personal experience with mail order, but they do get used, and not taking the step-down might have side-effects.
Hi Jean. Good idea. A few years ago the insurance changed Abilify on their formulary before bringing it back down again. It was cheaper ordering it from Canada, but was still pretty high. Worth another look, though, because I’ve found their prices do fluctuate.
I am taking Latuda, which is also an antipsychotic and used for depression. I will say, the only side effect that I have had is loss of appetite. The bummer about it is that you need to take it with 350 calories, which, when you are not hungry is a little difficult to do. So I take it with ensure on those days. I have been on abilify before so I am familiar with it. Not so much with repseridal. With the Latuda you can get those money savings card where it will only cost you 15 bucks. I didn’t qualify for that. I am currently paying $120 for a 3 month supply (I get my rx’s through Express Scripts through the mail) When I went to the regular pharmacy I was paying 60 for a month supply. What I am getting at, is, it is a new drug and can be expensive if your insurance doesn’t cover it. Without insurance it is $1200.00
It is very common for people with Bipolar to be on an antipsychotic. It is used as a mood stabilizer. Kinda keeps mania and depression in the neutral zone. In theory and in conjunction with other meds.
I hope that helped some…
Big help, Iggy. Thank you
I was put on a small dose of resperidal a long time ago to help combat a jump in anxiety. I’m on Lamictal for mood stabilizer. I think I remember the increased hunger and weight gain with the resperidal (about 10-12lbs.), which came off after my body adjusted to the medicine. The increased hunger was temporary too.
I have been taking Lamictal for years and I guess its doing its job. I’ve been on Risperdal for at least two months now and so far the side effects haven’t changed. I hope they do soon.
I’m proud of you for breaking your rule in this case & that you’re being open to hearing about others’ experiences. Lithium combined with a MAO have been the medications that finally worked for me.
I ‘ve taken Abilify & Risperdal in the past (not simultaneously!! 😉 and unfortunately neither one made a dent in my treatment-resistant bipolar depression. Therefore, I feel l ike a fish flapping about on the sand when it comes to making a helpful comment.
Please know I care about you and always want the best for you, darling Bradley! ?
I get asked a lot, but I’ve never taken Lithium. Here so many positives and negatives. I guess it’s like the rest of them. As always, wish you the best, Captain
That Risperdal is a nightmare med!! I had the same issue with Rimeron-I ballooned up!! Ability has a $5 copay card you can use with your insurance-at least they used to last year when I used it (the card). That damn drug has been a lifesaver for me!!
I’ll look into some programs to see if I can get that Abilify cost down. Thanks. I really hate this Risperdal.
I’ve been on Abilify for years, it’s been my one constant. I do know that I was able to get the med for free through the company itself, you just need to fill out paperwork with your doc that says you’re too poor to afford it. BUT, since then they now have a generic version of Abilify available at most pharmacies, it’s what I currently take, which may be a cheaper option for you, so you may want to check that out. Best of wishes!
I think I’m going to have to talk with the company. I was on Abiliby when the generic came out. The Abilify cost skyrocketed and the generic was less than $7. For some reason the generic changed this year and it’s the one that’s over $300. I’m not sure I’d get much help from the company. My pdoc says that once the generic comes out, the original maker just washes their hands over the whole thing, but it may be worth a try. Thank you, Hart.
I am also on abilify. The cost has come down significantly since the FDA approved the generic form. Oddly, my insurance does not cover the generic form yet. I don’t know why they are so behind. I checked online and it is available from the manufacturers. I take Wellbutrin as an antidepressant along with the abilify and a low dose of Lithium and it has worked wonders for me. I’m very stable as long as I am very disciplined in my thinking and sleeping habits. Years ago I took Seroquel and it worked but I didn’t like the side effects (tremors) but that doesn’t happen to everyone. Olanzapine put 20 lbs on me in a matter of weeks so I told my Pdoc I refuse to take it. He was not pleased but I stood my ground. Of course your chemistry is different from mine so all this could be different for you. If Abilify works for you perhaps you can seek out a way to get the generic form. Have you asked your pharmacist if they carry the generic or if they can get it and how much it costs? It has to be cheaper than the brand name. My pharmacist doesn’t stock Abilify or Wellbutrin but he gets it for me. It really stinks that we have to fight for our meds on top of having out condition but it is necessary. I hope you find something that works for you and soon. All the best to you, Bradley.
Hi Journey. My pdoc use to keep me stocked on Abilify, through samples, until the generic came out and then I switched. I was able to afford the generic until this January when my insurance changed their formulary and the generic cost skyrocketed. Once the generic came out, Abilify stopped offering free samples so I couldn’t get help there. Even ordering from Canada is too much for us right now. I’m going to have to keep searching for other options.
I’ve been taking a combination of Quetiapine, Depakote, and Lexipro for the past couple years. I have been content like never before. While I have put on 10 pounds they have been happy pounds when considering the alternative. I had hallucinations and severe psychotic episodes before my meds. It was scary to be in my head. I wish you luck in finding the right meds. I know this combo works for me. Please be careful and use caution when changing or coming off your meds. I know you know that. Luv, Terry
I’m glad you found the right meds, Terry. It’s great that you’ve been able to be so stable. I’ll get there again. It’s just going to take some time and energy – which I have neither, LOL
I was recently shocked when the pharmacist told me my generic Ability would cost over $200 (and that was before I lost my insurance)! No way! Doc has had me take Seroquel instead in the past, so that’s what I started doing. BUT I’ve been depressed since going off it. Also although I love the sleep side effects of Seroquel, it makes me want to “sleep eat” and groggy in the mornings. I would rather take it than Risperdal, though. It made me sleepy but uncontrollable kicking would keep me awake. My 5th day or so on it, I fainted. Can’t handle it. Sorry I couldn’t be more help, but that’s just my experience.
No apologies necessary, we all react to meds differently. My only negative with Risperdal is the cravings and weight gain. Yours were just much worse.
I’m sorry to hear your insurance is not covering the medication that works for you. My case is the opposite, Risperidone works for me, but couldn’t stand Abilify for one day. It drove me up the wall.
It’s funny how drugs affect each of us differently. Glad you found one that works for you.