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Posted By : Taygeta - 6/18/2015 4:45 PM
Had my appointment today. I will be starting Latuda tonight at a low dose, 20 mg. Because of my medicine sensitivity, my doctor wants me to take the Latuda on an empty stomach, not with food, to start. Makes sense based on how Latuda works. Lithium got me through the week, but I am starting to feel its dehydrating effects, despite increasing my fluid intake significantly. The depression I got from being on Depakote has diminished quite a bit, and the lithium has picked me up some. Again, trying to be hopeful with this, so I hope Latuda will be something that will help me without any major side effects I can't tolerate. - Taygeta

Posted By : UserANONYMOUS - 6/18/2015 7:09 PM
Taygeta, I hope the Latuda will work for you. Be sure to record any changes or side effects you may feel and let your doc know.

Remember to use your coping skills while on these meds too. They can be helpful at times.

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Posted By : cilly - 6/22/2015 12:53 AM
New drug shows great promises and is expensive but fairly new.
Keep us posted.
Hugs ,Take care~
Cilly~
MDD,Anxiety Disorder,Panic Disorder,Lupus,Fibromyalgia and so much .......

Posted By : theHTreturns... - 6/22/2015 2:58 AM
keep being strong. and positive, or as positive as possible. i believe this helps the med activate faster. a turtles theory from being on the med merry go round a few too many times!!
THE HAPPY TURTLE.

NOT DEAD YET!!!!! STILL KICKING AND SCREAMING!!!
'

Posted By : Taygeta - 6/22/2015 6:11 PM
Hi Cilly,

Yes. Expensive - just about any med with TV ads is through the roof, but fortunately right now I am on samples from my pdoc to ensure we see some positive results before she writes a script. So far, so good. Minimal SEs, just some dizziness now and then, some clouded thoughts now and then, and that's about it. Today I felt better than I have in several months, almost a little bit of a high at a few points today, so Latuda could be working. My experience with the meds is that even though they might say it could take 3 to 4 weeks for you to feel results, I often get results after just a few days or a week - either good or bad. One thing I didn't have this morning was the awful anxiety I usually have when I first get up - that is a relief in itself. Thanks for your encouragement! -Taygeta

Posted By : Taygeta - 6/22/2015 6:19 PM
Thanks, HT!

I believe positive thinking helps in the medication process, as you say. Experience teaches much. Every new med I try, I try to be very hopeful it is going to be a good match for me, and that is difficult at times because I have had so many bad matches. I came down my lithium assist over the weekend as I switched to Latuda last Thursday, so I was concerned some because Friday and Saturday were downer days, but Sunday started to pick up some for me - a few bright spots here and there. Today was even better than Sunday, so I know something is happening. Thanks for your positive thoughts!

Taygeta

Posted By : theHTreturns... - 6/23/2015 12:31 AM
:-) one day at a time.
THE HAPPY TURTLE.

NOT DEAD YET!!!!! STILL KICKING AND SCREAMING!!!
'

Posted By : not creative - 6/23/2015 9:41 AM
Latuda has a patient assistance program with cost. My copay would normally be $50 for non-formulary brand name and the assistance card brings it down to $25. Sunovion is the company I believe. Just google "Latuda Patient Assistance."
Laurenne
Crohn's, Fibromyalgia, BP2
3-9-10: Total proctectomy and Sigmoid colostomy
On: Simponi, 6MP, Cymbalta, Latuda, Gabapentin, doxy (rosacea), synthroid, iron, multivitamin

Posted By : Taygeta - 6/23/2015 6:50 PM
Thanks, Laurenne!

I will google it. Much appreciated. - Taygeta

Posted By : Taygeta - 6/25/2015 6:53 PM
So far, so good. Latuda must be helping because I have been in a pretty good mood all week, with only minor depression now and then. Since I've been down mostly for several months - the only difference is the Latuda at this time. I've been talking more, interacting more, not seeing everything through a darkened haze . . . interesting indeed . . . for a few times this week, I'd say I was on a high side - haven't experienced that in quite some time. Overall, a pretty good week.

- Taygeta

Posted By : UserANONYMOUS - 6/26/2015 6:45 AM
Taygeta, this is good news. I am glad the Latuda is working well for you and you had a good week since using it.
It sounds like you've found a med that works well for you :-)

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Posted By : Taygeta - 6/26/2015 2:42 PM
I saw my therapist today, and he immediately noticed a huge difference in my mood from the last time I saw him. He was quite pleased with the results of the Latuda so far. With my depression eased, we were able to work on more things than I have typically been able to work on - I was very talkative, which I often am not at sessions.

And so far, no side effects from the med that I cannot handle, so that is encouraging too. Thanks for your support! - Taygeta

Posted By : UserANONYMOUS - 6/26/2015 6:23 PM
yeah

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Posted By : Taygeta - 6/30/2015 5:03 PM
Another four days on Latuda, and another four reasonably good days. I am clearly seeing the difference pre-Latuda and post-Latuda. I do notice I am having a few mild hypomanic events too, which I wasn't having at all while in deep bipolar depression. Nothing I can't handle, but my therapist noticed a remarkable difference between my last appointment and the previous one. I am definitely talking more, being more sociable both at home and at work - and I like what I am seeing. SEs continue to be tolerable, the worst being it's a little tough to get to sleep, but again, that one I can handle. - Taygeta

Posted By : Taygeta - 6/30/2015 5:23 PM
Also, I made an appointment with an allergist, so I am going to see what this NSAID allergy is all about, hopefully. I know I have allergies to cats, dogs, various tree pollens, ragweed, and a handful of meds other than NSAIDs, so it will be interesting to find out what else I am allergic too as well as what light the allergist can shed on my NSAID reaction. I actually would not even have made that appointment except for the bounce back Latuda has given me. I've been putting it off for whatever reason for months and months. - Taygeta

Posted By : UserANONYMOUS - 7/1/2015 8:57 AM
I enjoy reading the good news regarding the new med. I am happy it's still working well for you.

I hope the allergist will be able to shed some light and help you. When is the app? Keep us updated on how it goes.

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Posted By : Taygeta - 7/1/2015 9:29 AM
The appointment is July 20th. They told me to expect to be there at least for an hour 1/2 to 2 hours, so I am expecting some allergy testing to be happening.

Was kind of funny when I called for the appointment. The receptionist asked me what kind of symptoms I was having, mentioning things like sinus problems and stuffy head, and I had to tell her, no those aren't the issues I'm dealing with, it was anaphylaxis‎ from taking one NSAID, and that I was rushed to the ER. There was a bit of a pause on her end after that, lol.

No, I'm never a normal patient it seems, lol. Always something to make the medical community scratch their heads and think about. Will post again after the appointment to let everyone know how it went. Thanks. - Taygeta

Posted By : UserANONYMOUS - 7/2/2015 6:50 AM
Yep, it does sound like they'll be doing testing if they're keeping you for more than an hour. I really hope they would be able to help you.

I look forward to hearing about the app.

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Posted By : lindamine - 7/3/2015 3:28 PM
I just want to let you know that if you google latuda and go to it's website there is a coupon for it.
You can get the script for 25.00. It would have been 75.00 with my insurance.
Hope this helped someone.
Linda

Posted By : kellyinCali - 8/26/2017 8:00 PM
Taygeta --

I am very interested in hearing an UPDATE from you.

I was on Latuda for a week and noticed improvement. I was then upped from 20mg to 40mg and I got Akathesia. I became terrified of this drug but like you, I am "med sensitive" and always a "challenging patient" as a result.

Since Latuda is so new (My P-doc) gave me samples of 40 that I can cut in half, it's hard to get a feel for how patients are responding. I would be thrilled to hear that you are still on it and happy but even if you stopped, please let me know how you are doing on it or if you stopped/changed to something else.

FYI: I would like to be on Lamotrogine but I got the Lamictal Rash. sad

Posted By : lindamine - 8/27/2017 6:51 AM
hi....
Hope you are feeling well. Yes, I am on it.
I was on 120 mg for 6 years. I developed
Diabetes type 2 out of nowhere. No history
in my family and I was never a candidate to
be predisposed to it. I did some research and
sure enough, this can raise your blood glucose.
I believe now, it is listed in it's side effects.

I swiftly took myself off it (told my PDoc) and she
didn't agree that the Latuda did this. I was on such
a high dose. Anyhow, went without any for about
two months and my anxiety and panic returned
with a vengance. I couldn't live like that.

I slowly went back on the Latuda, this time starting
at 20mg. and worked up to 40mg where relief finally came.
That is the dose I have now been on for a year.

The diabetes never changed during all these changes. Thankfully,
I was able to control it with just metformin tablet 2000mg/day and
diet and lifestyle changes. All is well once again this way.

I do believe it to be the Latuda that put me in this state. Like I said-no
family history and I never showed signs of it in my life before-but who really knows.
The two months I was off of it were not long enough, I believe, for my body
to correct itself or if in fact there is a chance of correcting it. This, quite possibly
will be something I will always have. Thanking God that I am able to control
it as I am.

Honestly, I was a bit overweight so the diabetes is more of a possibility for me.
I've since lost quite a bit of weight and exercise daily along with omitting sugar
from my diet. This was not easy at all for me but I knew I had to do it. I have
already lost feeling in my feet from diabetic neuropathy, so that really frightened me
which made me take this very seriously.

All in all, this has been a blessing in disguise. I have drastically changed my eating habbits
and exercise and I have never felt better.

Do I think it was the Latuda that did this? I think it contributed to it. My diet
was not so healthy and I didn't exercise as often so this contributed as well.

Just be sure to monitor your sugars if you are on it. It is only recently that Latuda
has stressed this in their warnings.

I hope this helped. I was on such a high dose of it from my first PDOC and my new PDOC
just kept it the same because it was working. Mentally I was in far worse shape when
I went on it-which is not the case anymore. Thankfully 40 and not 120 works for me now.
Who knows if I would have been able to control diabetes at 120mgs of Latuda? I don't care
to test it.

I hope this helps somebody.
Peace always,
Linda

Posted By : kellyinCali - 8/27/2017 9:48 PM
Linda -- THANK YOU very much for responding. I didn't even know Latuda had been around for 6 years. The FDA approved it for "Bipolar Depression." My glucose levels are on the border now. I am 53 with a few extra pounds. Like you, I will have to watch this as well as make changes to my lifestyle. I have been in deep depression with a mind of its own. This is the longest and deepest I have ever experienced. It's good to hear that you came out of the deep depression and are doing well on 40mg.

Posted By : Taygeta - 8/27/2017 11:42 PM
Hi KellyinCali,

I don't remember what dose I eventually had on Latuda, but like you, I began to get Akathesia symptoms. I ended up stopping Latuda, went through a couple other "recent" meds, then finally went to Rexulti. I am on lamotrigine, 200 mg per day right now, and it has helped immensely. I also take .25 Rexulti daily; I initially had muscle aches from it, so went off it, then back on it, etc. Finally, I realized it was a good assist with the lamotrigine, so I figured I'd see if I could get over the aches being an issue. Had about two weeks of the muscle issues, and they diminished some or I just got used to them, so they are tolerable now. Sorry you cannot take lamotrigine. It has worked wonders for me. I had a genesite test done, and that showed me and my PDOC a lot about why ADs were not working for me, and it showed the meds that were most likely to help. I would highly suggest having that done if you have not. It is a good guideline for meds. In fact, other than the small amount of rexulti daily, I pretty much have given up on ADs as almost all of them are "bad" for me based on genesite. As well, the test showed I had a very low likelihood of developing the rash from lamotrigine; and I have never had any signs of a rash moving up from 25mg a day to the 200 a day I take now. I am extremely sensitive to med side-effects as you are and have been a "challenging" patient as well. I have probably run through at least 15-20 different meds over the past 5 years or so. Hope this helps.

Taygeta

Posted By : kellyinCali - 8/28/2017 3:50 AM
Thank you for responding Taygeta. I appreciate your feedback. I'm started to panic that I won't find a med to help me out of this whole. It's unbearable at times and I feel like I'm just existing for my fur-kids. I'm bummed I got the rash but it was quite painful and scarring too. I got it w/i the first week so if you haven't gotten it, you are fortunate. Have you ever tried Lithium? I do not even consider myself Bipolar (maybe hypomanic) but it looks like I'm SSRI resistant at this point in my life. sad

Posted By : Taygeta - 9/1/2017 7:14 PM
Hi KellyinCali,

I am sorry you are experiencing this. I am quite familiar with the "unbearable." Had too much of it myself over the years. They say the rash from lamotrigine will happen pretty quickly. My Pdoc told me any rash at all that appeared, I should let her know. I was fortunate it did not happen as I don't know what I would do without lamotrigine. I have tried lithium - worked except I was on the toilet constantly, so I had to stop it within a few weeks. If you are not hit with major side-effects, lithium might be worth a try. I am a hypomanic bipolar, so the ups are not irrational highs. The depression part though destroys me. You may be SSRI resistant - I have a genotype that does not process anything with SSRI ADs. That is why I get few positive results, and I am mainly hit with the side-effects. I will never go on an SSRI again. How many different meds have you tried so far? Have you gone toward those that are not ADs, but are antipsychotics, anti-epileptics, etc? There are a number of them used for off-label purposes. I think lamotrigine is one of those. I would seriously suggest having the genesight tests done. You will learn a lot from that. You do not have to pay the 6K or so they charge because they have plans to assist with payment. I only paid about 360.00 for the test, and it was about the best 300 I have ever spent. I believe some people can get it for free or under 100.00. You need to have a PDOC that believes in it though to have it work successfully. Some doctors think it is rubbish, but since it matched my meds so closely with how I reacted to them - it immediately made me and my PDOC believers. Look up GeneSight on google. The test showed me that lamotrigine was in a favorable column for me and it also showed I was unlikely to experience the lamotrigine rash. It was dead on accurate with both of those results. Wish I could help you more than just telling you my experiences. Always open to discussion with you. Do you have a lot of anxiety? I also have that - part of the whole bipolar thing - and we have pretty much put that in its place with clonazepam. Works much better than xanax, and stays in your system for a longer period of time. Only drawback - you are likely to get hooked on it - I know I am - and if I ever get off of it, I will have to do it in an incremental system. I am able to vary the dose per day though. Some days I need 4 of them. Other days only a couple. Some days only 1. It really is tied into how much anxiety I have. I would rather deal with the clonazepam "addiction" than the horrible anxiety I used to experience - including panic attacks. My best to you! Taygeta

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