[BeyondtheRainbow]

I had decided that if my pdoc thought another trial of Latuda was worthwhile I'd pay out of pocket for one month to try it. Somehow I got it in my head that it would be about $250. I just ran it through my insurance calculator and it would actually be $700 and something. So, won't be doing that.....

It was really just a way to delay the other options. Unless my pdoc has come up with another idea or has decided one of the newly released meds will work for me Monday will be a day a huge decision is made. We'd talked about trying lithium again as one last more gentle measure (I've had 3 toxicities including 2 when my dose was pretty low or very low so it would mean lots of labs but worth a try) but then I realized that I would be in a tough place. I get migraines and if I can't take ibuproferon then I'm going to be taking a lot of Norco which isn't good. So I'm not sure that's a good idea at all. Plus I really don't want another toxicity.

Tomorrow something really, really hard may happen and that will push things in that my ability to cope is going to be a bit limited. that maybe the deciding factor.

But I just don't want to make these decisions. I really thought buying a month with Latuda was a great idea. But I can't afford that much for something unlikely to work. There's also changing drug plans to something that covers another MAOI and waiting to January and changing to that but I don't think that's my big issue. I think my big issue is that Seroquel isn't as effective anymore.

I guess will see what happens. I just am hating the waiting.....

[LettinG0]

So sorry you are in such a tough place, Beyond.......know the waiting is so hard.

Hugs.....

[Mountainbard]

Waiting is always tough. I hope things get better for you soon.

[raspberrytorte]

Oh no, rainbow.

Wow. Latuda is expensive.

I have some trial packs in my freezer right now, enough for two months. The last person I was seeing wanted me to start on it, but I didn't bother because I wouldn't be able to afford it every month anyway once the samples were gone. I wish I could give them to you.

(Not that it would matter anyway I guess because afterwards you wouldn't be able to afford it either!)

Hugs!

Want you to feel better!

[Moreta]

Have you thought about diff APs besides Latuda. I found Latuda very ineffective and I was on 160 mg. I take saphris and geodon, and between the 2 they seem pretty effective. You just got to get over the taste of the saphris. Saphris might be cheaper since it's been out longer.

[BeyondtheRainbow]

THanks for the idea. Yes, I've been on all the atypicals except Saphris, Invega (allergic to risperdal so can't do it) and I tried Latuda when it was new but didn't give it a very fair chance for whatever reason. With Medicare only the old meds are affordable and I've had big problems on the older drugs with movement disorders.

At this point I have 2 brand new drugs that aren't approved for bipolar depression which is my current main issue, ECT or clozaril to choose from. I was hoping to re-try Latuda since it didn't get a good chance and could maybe work on a 2nd try.

I did check Saphris from your suggestion and it is still almost $500. I haven't been on it because it can't go with Seroquel, or at least the amount of Seroquel I'm on. I think I need to get off Seroquel anyway but my dr can't get samples b/c of hospital policy (except for the completely new drugs) and without samples I can't find out if drug works before going on patient assistance. And I just don't have $500 for a month of a drug (I'd been counting on getting a higher dose of Latuda and breaking it in half to get me through until patient assistance would kick in; with Saphris I assume you can't break pills so it would be $1000 for the 2 months I need before patient assistance.)

It's just a ridiculous Medicare thing where old drugs are cheap or free and new ones impossible to afford. Yesterday I picked up 3 prescriptions and didn't have to pay anything but any non-generic AP is impossible to afford. And the atypicals that have gone generic are all ones I've had big problems with.

Thanks again for the suggestion.

Originally Posted by Moreta

Have you thought about diff APs besides Latuda. I found Latuda very ineffective and I was on 160 mg. I take saphris and geodon, and between the 2 they seem pretty effective. You just got to get over the taste of the saphris. Saphris might be cheaper since it's been out longer.

[Nammu]

I'm on Medicare I can get latuda. They did have to make phone calls and a special paper that said I needed to go on this one. It's the higher price co-pay but it's affordable for me.

[Moreta]

Be careful with clozaril. You're supposed to get weekly blood work on it. I looked into it cause I was at the end of the rope. It can do bad things to your white blood cell count. There was a lady in the hospital when I was there that was put on the stuff, and she had to be rushed to the hospital one night cause of toxicity. Scary stuff that clozaril is.

Have you tried haldol? I was pretty laid back while on it. Good for sleep too.

[BeyondtheRainbow]

My plan puts it in the category where I pay most of it. It would start with my deductible since I haven't used any tier III-V meds and then they'd cover a small part of it but not that much. I guess I should look into plans for next year and if I could get it then for a more affordable price. Thanks for the information.

[BeyondtheRainbow]

I am not thrilled about clozaril but it is becoming my only choice really quickly. I've already been through the whole blood test thing with my pdoc and if we have to use the stuff it will be just as the marketers advertise, a last resort. I'm quite afraid of it although my pdoc says she's had people do really well on it.

Haldol has a high risk of causing movement disorders for me. I've had them happen over and over with different meds and am currently not very interested in trying anything with much risk of them because the whole thing is awful. I go on the med, maybe get some response, then the first warnings of the movement disorder come, we adjust treatment, it continues, we keep adjusting and lowering the dose eventually, I lose all benefit and have to come off and last time ultimately wind up IP to get things under control the best they can (which is not that great because my current meds just aren't working well anymore).

It's just a tricky situation. Hopefully my pdoc has had something new drop into her lap since I saw her. Or there will be some surprise in my list of what my insurance covers when she looks at it for the 10th time.

I've known for years that it was likely I'd get to the point that there just weren't any meds that were good options. Even with preparation (and the ability to deny that for a long time because the last time we got close something worked) it's just hard to believe I'm actually here.

Originally Posted by Moreta

Be careful with clozaril. You're supposed to get weekly blood work on it. I looked into it cause I was at the end of the rope. It can do bad things to your white blood cell count. There was a lady in the hospital when I was there that was put on the stuff, and she had to be rushed to the hospital one night cause of toxicity. Scary stuff that clozaril is.

Have you tried haldol? I was pretty laid back while on it. Good for sleep too.

[Moreta]

I hope you find something that works for you. I know what it's like to be on the med merry go round. I had movement disorder when I was taking geodon and latuda together and came off the geodon. The latuda didn't work out, so I went back on the geodon.

Hang in there. Let us know how it goes.

[BeyondtheRainbow]

Thank you. I'm so glad I have this place to talk about this; my family just starts to look confused as I fly through my thoughts. And of course I think about this all the time.

[newtothis31]

With Latuda, I have a discount card- Copay Savings Card for Latuda® (lurasidone HCl)

The downside is that it's only good for a years worth of prescriptions.

[BeyondtheRainbow]

Those don't work with Medicare. For some reason the cards exclude people with government insurance.

But thanks for another idea. I appreciate all of these.

Originally Posted by newtothis31

With Latuda, I have a discount card- Copay Savings Card for Latuda® (lurasidone HCl)

The downside is that it's only good for a years worth of prescriptions.

[wildflowerchild25]

I really hope you find something that works soon. I feel so bad for you knowing what you a region through and how long it's been. I don't know how you're still living. That's a major accomplishment, I feel. I usually only have to deal with it for two weeks before something switches.

[Pikku Myy]

Latuda was too expensive for me as well. Ended up on a mix of so called "free" med's so much for those.

[LettinG0]

Originally Posted by BeyondtheRainbow

Those don't work with Medicare. For some reason the cards exclude people with government insurance.

But thanks for another idea. I appreciate all of these.

Just FYI ---- You have to NOT use any existing insurance.....just the discount card by itself.....

[BeyondtheRainbow]

But even enrollment in Medicare disqualifies you from what I'm reading. It asks if you have Medicare and then says if you do that you are not eligible. Am I missing something?

Originally Posted by LettinG0

Just FYI ---- You have to NOT use any existing insurance.....just the discount card by itself.....

[BeyondtheRainbow]

This one is weird for me. Usually I'm mixed nearly all the time. Right now I'm mixed but not badly and the depression is much, much stronger still. I haven't had many times an episode has been like this. I was manic for the first several months and then haven't gotten past the depression since. I'm not sure I've ever had severe depression as my label for so many months, at least since I was diagnosed. I've been diagnosed 13 years so that's a long time for a new variety of episode to come out. But it's my first big episode without lithium and that seems to have made a negative difference. I probably should just suck it up with migraines and go back on low dose lithium and see if it helps. I'll see what my pdoc says but lithium and I have had a love/hate relationshi for years. Or maybe an abusive relationship; I love it, it works for me and it beats the crap out of me with toxicities even with a very low dose.

Sometimes I wonder how and why I'm still here too.

Possible trigger:

Now I'm at this point where my oldest niece would know and remember if I hurt myself and I can't do that to her. So instead I fight with the feelings a lot. I've' been too numb to feel really suicidal but tomorrow I'm giving my therapist a pocketknife to keep for me. I found it in a box yesterday. It was from my years as a camp counselor, the best months of my life and somehow using it to stop this life seemed like some kind of balance. It's safe enough for now because it's as dull as can be (and locked in my car) but I'll have him keep that for a while.

Oh well. I'm just so tired. It will pass.

Originally Posted by wildflowerchild25

I really hope you find something that works soon. I feel so bad for you knowing what you a region through and how long it's been. I don't know how you're still living. That's a major accomplishment, I feel. I usually only have to deal with it for two weeks before something switches.

[Nammu]

Rainbow

[BeyondtheRainbow]

Thank you all so much. Today was very, very difficult for reasons other than this (and this is always on my mind right now so this as well) and all of this support felt like I wasn't nearly as alone as I felt all day. It felt like I had people on my side on a day I really needed that and just, thank you so much.

[LettinG0]

Originally Posted by BeyondtheRainbow

But even enrollment in Medicare disqualifies you from what I'm reading. It asks if you have Medicare and then says if you do that you are not eligible. Am I missing something?

Oh....maybe not.....sorry, didn't mean to give bad info.....