So frustrated! Medication and red tape rant

I cant handle this anymore.Three weeks ago I ran out of lithium and my stupid ****ing doctors office/doctor just wouldn't do their ****ing job and call the pharmacy for a refill. Last night the doctor at an IOP i used to go to said just drop the lithium because I dont need it on top of my clozapine anyways. This morning I get a call from the pharmacy saying my prescription is ready so I call them back and ask if its the clozapine (which I am now out of as well) or the lithium. IT WAS THE LITHIUM.
So as soon as I officially stop taking it and stop worrying about getting a refill I get the refill.
I'm sick of dealing with my doctors office and the pharmacy and the lab every month. I'm sick of going to the hospital and waiting an hour to get stabbed. I'm sick of constantly wondering what's going to go wrong with the system next. I'm sick of all the red tape.
I saw another doctor yesterday who prescribed me two medications. Before I even got home I get a text from the pharmacy saying its ready. Why cant it always be like that?
I literally cried and raged last night because I ****ing loathe clozapine. The red tape, the side effects, and the constant reminder of what a ****ed up individual I am.
Why couldn't an easier med have worked for me?

The meds stuff can be soooo frustrating. I hear you on that. Hugs.

I haven't found an easy med. I have to get yearly pre-authorizations for almost everything. This year they covered one, filled it, I picked it up, and then the pharmacy calls and says I'll be getting a bill from them but to not worry about it because they're working to fix it. The bill is auto-generated in the system. This was the first for that one. I said that they already sold it to me and it's really their problem and they said that was correct and they'd fix it.

Clozapine did wonders for my mood but the side effects and constant blood work was just too much. I finally went off it and switched to Geodon. It's working pretty good and I've had no side effects which is a bonus. Hope things start to look up for you.

Every other med I've been on is an easy med compared to clozapine, red tape wise.

I called the pharmacy again to see if my doctor sent over the clozapine Rx yet. Nope. Then called my doctor to ask him to send over the clozapine (and said it was urgent). Now I'm gonna have to get my blood work done again even though I just had it done last week.
When I see my doctor I'm gonna ask to switch to something else even though Ive tried just about everything else.

I understand your frustration.

I've been taking about half my usual dose for days because I was sick last week and didn't get my blood drawn. I tried the week before but my order had run out and they had to request a new one. If things go the way they usually do it should get filled today but it's getting later and I've not heard from the pharmacy which isn't a good sign. I have enough for 2 more days at the reduced dose.

And then I don't know what to do. I'm doing fine on less so I want to stay on less but I'm not supposed to change my dose myself. I don't want to try to deal with that over email with my pdoc so I think I'm going to 300 instead of 350. I just hope she's not mad.

I've failed every other med too so clozapine it is. It sounds like you have a worse time than I do with pharmacy/doctor coordinating but I do know it is annoying to be caught up in the whole process.

For me it's one hour until I call my pdoc's office and beg them to get the labs to the pharmacy, assuming they've even made it to the doctor yet.

Well, I shouldn't have given my pharmacy credit. My script was supposed to be filled by 2. When I hadn't heard by 3 I called so I'd know if I had to call my pdoc. The pharmacy had the labs and just hadn't bothered to fill the script. I have enough clozapine to take a real dose tonight and I'm glad because I don't have patience for the pharmacy line after they ignored my refill request despite having the precious labs.

Clozapine does take a lot of patience........

Everything takes patience, but it all happens quickly.
You have what you need tonight. I'm grateful for that.

I called my doctor's office today (again) to ask for a refill. They redirected me to the "refill line" to leave a message (again). I've never actually gotten a refill filled after leaving a message on the "refill line," even though I've left plenty of messages on it.
I picked up the lithium that I don't need today and asked the pharmacy for a few clozapine pills to hold me over seeing that I'm out now. Got the blood work done today, again, even though I got it done a little over a week ago.
I just want my damn clozapain.

I picked mine up and the cost doubled for no reason I can understand. So now I have to deal with calling the insurer tomorrow. I don't have a choice, this is the last med option I had, but $50/month is a lot when the plan information led me to expect $20/month. Ugh

More ranting. Sorry guys but I'm just going nuts thinking about it. This is getting ridiculous. I'm calling both the pharmacy and my doctors office tomorrow to try to get this ****ing prescription. I dont even know what to do anymore. It seems like the doctors office just doesn't want to get me my meds. I might go back to the IOP and ask them for a refill and a referral to a new psychiatrist.
I just know I have practically no clozapine in my system at this point and I'm scared the symptoms are gonna return and Ill end up hospitalized, in jail, or dead. I literally get lectured when I stop my meds myself and med compliance has been a big problem for me in the past and this kinda stuff just makes it harder.
And I might have to get my blood work done for the third time this month.
Im just so pissed off and I know I'm not the only one who keeps getting ****ed over by these places. I'm always fighting someone or something and I'm sick of it.

Maybe a referral for another is a good idea. I don't know. It's up to you.
I do not like seeing you're stuck like this. I had a similar problem with Latuda for two weeks, and of course it was after I'd ran out of samples. I finally went back to the doctor's, and called the insurance company with him. He told them "it's still cheaper than a hospital" and I went in and picked up my script with no problem. He gave me more samples anyway. I had the bad symptoms and had to quit taking it a month later.

If my doctor was so bad about the labs I would change pdocs. My pdoc has her secretary put labs for clozaril patients in a place where she signs them as soon as she goes to the secretary's desk next and the psychiatry department makes sure they are covered if she is gone. Then they are immediately faxed to the pharmacy. I have never had trouble with this and have never missed a single pill because of my doctor. I did miss some this last few weeks but that was because I was too sick from needing my gall bladder removed to get to the lab.

My pharmacy tends to mess things up but usually it is in my favor, like not enforcing things like bloodwork within a week of refills (is that right?) and when I was on weekly labs they still filled for a month.

Putting a patient on clozapine is a commitment on the pdoc's part and if they can't keep up with it they need to not prescribe it. Your medication should not be so stressful.

I'm pretty sure my pdoc doesn't even look at the blood work. Every month I need to ask the pharmacy to call the hospital and ask them to send over the results and then wait a day for them to get the results and fill the prescription.
Right now its not even the blood work that's keeping me from getting the clozapine, its that I have no refills and my doctor has not sent over a new prescription despite me calling every other or every third day for the past few weeks. I dont know if its my doctor or elsewhere in the system. I believe its elsewhere in the system because previously Ive called and left messages for my doctor (like hey I'm mixed and in IOP and am on 3 new meds) and he never got those.
But finding a new pdoc is another stressor I do not think I can handle right now. I need off clozapine if I'm ever gonna have hope at being accepted as a patient anywhere.

Sounds like your pdoc just sucks. Mine keeps up better than that and she's running the residency program for a huge hospital as well as seeing patients part-time. Granted her secretary is awesome at reminding her to do things like call in scripts but however it gets done it is done.

There is no excuse for your pdoc to act like that.

I totally understand being too overwhelmed to do the dr search thing. I haven't had to do that in a long time but it sucks since you never know what you'll get. I just had an encounter a few weeks ago with a surgeon who was obviously completely freaked out by my psych stuff. I need him to remove my gall bladder, not treat my psych stuff (and after my appointment he's not even doing that). It gets so frustrating trying to be considered a person, not a person on psych drugs and even more so if they know that clozapine is a sign that treatment hasn't worked well, leading to more jumps in their head. Hopefully pdocs don't do that but I've seen them do it.

I wouldn't give up on finding another pdoc who will do clozapine. If you can go to a bigger hospital, especially a teaching hospital, you'll probaby have more luck. I drive 2.5 hours each way for my pdoc but it's totally worth it in that I can be on clozapine and emsam, both drugs that aren't prescribed very often. And if my pdoc retires or something there are lots of other pdocs who will have experience with the meds.

Could the IOP doctor call your doctor?

I so feel for you. Every damn time I need a med refill for any of my meds I have to go through a circus to get the med. I am very med compliant, but between the doctors and the pharmacy being compliant is difficult. I can sure understand why a lot of patients aren't. I can scarcely remember a time when going to the pharmacy wasn't a big bureaucratic mess; it's a rare pharmacy visit that isn't frustrating and stressful.

I wish I had an answer or even suggestions for you. All I can say is, persevere because it's for your own good. And know that you are sure not alone.

The whole insurance, refills, doctor's office, lab work, side effects thing is just unendurable. As if being sick isn't enough stress. If one is trying to do it all alone, its' near impossible. My husband helps out when I can do it no longer.

Many hugs to you. Your feelings are shared by many of us.

After numerous calls to the doctor's office, the pharmacy, and the hospital lab, I finally got my clozapine filled. My mother helped out a bit and picked it up for me. I have three refills so at least it'll be a while before I have to deal with this insanity again.
Hopefully I'll be off clozapine by then. I'm still going to discuss getting off with my pdoc when I see him next.
I'm supposed to take 300mg of clozapine per day. Lately I've only been taking 1 pill (100mg) a night if I can't fall asleep on my own. I'm going to keep doing this and sometime this week I'm going to group and going to ask the pdoc there (who I trust much more than my actual pdoc) if it'd be okay if I didn't go back up to 300mg and what dose I should take and how to taper up to that dose if it's more than what I'm taking now.
I'm just happy this is all over with for now.

If 100 is working, I'd leave it alone. Do ask a doctor.
So awesome it finally got worked out! You've been far too dragged around by this.

I know when I started my pdoc told me about 200 mg is a reasonable dose. However I've been on 325-350 except for last week when I was alternating 200-300. My pdoc told me that she's used up to 800 mg. I never even tried 200 except to go past it when I was having my dose established IP.

Does it really help you fall asleep? It helps me some but I still need other meds (gabapentin, klonopin) to fall asleep.

I'm glad you finally got it.

Oh yeah, anything over 100mg knocks me out. I could, however, take all the gabapentin or klonopin in the world and not be affected.