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Old 19-08-2015, 02:15 PM   #1
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zuclopenthixol/clopixol and flupentixol/depixol depots...NEW question post 8

Hi,

So I've been struggling hugely with my clozapine and the side effects. I've tried really hard to stick with it (ive been on it a number of years) but i can no longer do it. Saw my psych and the pharmacist today and whilst they both want me to stay on clozapine, ultimately its my choice.

I was given information on the two above depots and told to have a think which i would prefer to try. I've never been on a depot before so I have a few questions.

Does it actually hurt that much getting it done?

With regards to the two named meds in the title, has anyone had trouble with weight gain?

Or sedation/fatigue/chronic tiredness?

Y'know how when you take oral meds at night and after a while you get sleepy, with the depots, would you end up sleepy all the time?

What side effects did you experience if any?

How long did it take to actually start having an effect on your symptoms?

Any info really would be much appreciated!

Thank you =]


Last edited by Cedrus : 24-08-2015 at 07:45 PM.


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Old 19-08-2015, 03:09 PM   #2
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I know Beckie (cacoethes) is on a depot so she can hopefully answer your questions if she sees this!



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Old 19-08-2015, 03:24 PM   #3
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Cool! I hope so! Have just gone and really freaked myself out by looking at all the side effects online. Even the 'resepected' NHS site is scary! Am feeling quite overwhelmed now. And my consultant insinuated that there isn't much else to try except the above. But I seriously cannot go back onto clozapine. I know I can't say weights but mine has gone up HUGELY and i can't read due to sedation. But bloody hell, those side effect lists! Eeeek!!!!!



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Old 19-08-2015, 03:49 PM   #4
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Heya.

I'm on the zuclopenthixol depo.
I'll try and answer your questions as best as I can!

It doesn't hurt getting it done. the nurses that administer the depo do it all the time so they're pretty good at it.

I haven't experienced any weight gain on the depo. If anything it's curbed my appetite.
I don't get tired on it either. Although I do get a bit spaced out occasionally but it's not too bad at all.

I haven't noticed any side effects apart from the lack of appetite.

It took a few injections to start having an effect on my symptoms and they have to adjust the dose. Usually they'll start off with a test dose and work up from there.

Hope this helps!



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Old 19-08-2015, 08:39 PM   #5
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It does hurt a little whilst the injection is being administered (I am on clopixol depot ) it's best described as a sharp scratch. As for side effects I have a lump in the area which makes it painful sitting on hard chairs. But that goes away. I also get occasionally blurred vision but that only lasts for 48 hours.

I have some weight gain but it's only minor as I had more dramatic weight gain with risperidone and quetiapine.

I don't suffer with sedation.

It took me 4-6 injections to notice any effect. It's been so effective for me that apart from twenty mins a day I don't hear voices.

I have had depixol when I was IP, it gave me permanent pins and needles, I hated it so much that I put on my advance directive that I don't want it.


Last edited by not_so_insig : 19-08-2015 at 08:45 PM.


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Old 24-08-2015, 05:32 PM   #6
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Has any of the answers been helpful Cedrus?



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Old 24-08-2015, 07:41 PM   #7
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Hey, yeah, sorry for not replying! Have had a lot on my mind and it slipped my mind that i had made the post.

Yes, the above replies have been helpful. Thank you!

I'm getting my test dose tomorrow. Not sure which medication it will be, i just told the Dr i want the least sedating one.

Sounds like the zuclopenthixol hasn't given you guys serious side effects but i guess everyones different. ill be on clozapine at the same time so having a sedating medication added would be hell. ill be coming off the clozapine at some point (i hope!) but i dont know when they will start reducing it.

I'm too scared at the moment to reduce the clozapine further as they keep mentioning hospital and i don't want to do anything at all that could give them reason to section me.....not sure if you can get sectioned for non -compliance and im not on a CTO thankfully.

But yes, thank you for taking the time to reply and share experiences.



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Old 24-08-2015, 07:44 PM   #8
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Oh, i do have a question but not sure how to write it.

Obviously the area where they give it to you, like can you just slip your trousers down a bit if that makes sense?



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Old 24-08-2015, 08:10 PM   #9
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Yes I just slip my trousers and knickers down. Just past my bum enough for my cpn to see what's she's doing. I have my back to my cpn so she doesn't see my front part. Clopixol is one of the thickest oils according to my cpn so they can't rush it but the whole procedure takes less than 5 minutes.

The person giving it may ask you if you would like a plaster (this is to check if you're allergic to them ). Generally they apply a alcohol wipe to the area, but I am allergic to them so its not compulsory.



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Old 24-08-2015, 09:39 PM   #10
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Oh, okay. Thanks for letting me know.

I actually feel scared about the process =[



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Old 24-08-2015, 09:57 PM   #11
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You don't have to reveal much at all when you're getting the depo. Thry just need to get to the top part of your bum so the whole of you isn't exposed!

What is exactly is scaring you about it?



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Old 25-08-2015, 04:06 AM   #12
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Hey, I'm on depixol depot.
When you have it done, it helps to take some weight off the side they're injecting by leaning on the other leg. It just relaxes the muscle a bit. Good luck! X



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Old 25-08-2015, 09:16 AM   #13
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Thanks for sharing your experiences, it's much appreciated!

Thanks for the tip Bear. How long have you been on it? Are you finding it helpful? Do you take any other anti psychotic alongside it?

Beckie, you cleared up part of my fears regarding only the top part needing to be exposed. I actually had a horrible dream last night about the process and having lots of my body exposed.

I'm scared also because with tablets if you get bad side effects you just stop the tablets but the depo I assume the side effects would linger, I know they do a test dose, but what if that goes fine and when they increase it i get nasty effects?

Also, (sorry for so many questions) how often do you get the depot?

I'm going down to HTT later on today, so I'll ask them the questions if no one replies before I go.

But again, thanks for sharing your experiences :)



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Old 25-08-2015, 12:02 PM   #14
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I have mine once every three weeks but have had it once every two weeks in the past. They can put you on it once every week if necessary but that's rare according to my cpn. Generally they like to start once every 2 weeks and depending on your reaction work from there.



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Old 25-08-2015, 01:21 PM   #15
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I'm stupid. I went to see HTT, ranted a bit and I didn't realise today was just for me to confirm which medication to take after they had spoken to the pharmacist. Apparently the pharmacist said they are very similar so i just stuck to my first thought and chose flupentixol/depixol. But, I didn't ask any questions! I don't even know why.

Anyway the good thing is that they said something about once I reach a dose they are happy with and see results, they will start to reduce the clozapine. I'm also on aripiprazole at the moment (5mg) but thats going to stay as when it comes to the raised prolactin side effect i often get absent periods and have lactated on amisulpride. Considering i find that so distressing they've said to keep the aripiprazole in and that its okay as its a small dose.

I need to try and write a list of questions for tomorrow

Oh, and thanks for your help, again, it is appreciated.



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Old 25-08-2015, 02:58 PM   #16
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Sounds like quite a productive appointment even if you didn't remember to ask your questions!

Could you set a reminder to ask the questions?



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Old 26-08-2015, 02:52 AM   #17
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Hello pet.
I've only been on this med since March. I was on a rarer med called piportil which was fab but they stopped making it.
I'm slowly slowly increasing my depixol dose. The range is pretty massive!
Anyway I'd say it's not as good as piportil but better than others.
I take two oral depixol tablets a day too, and promethazine.
Really hope it helps xx



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Old 26-08-2015, 08:39 AM   #18
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Thanks guys and thanks Bear.

I'm going in today to get the test dose. I might be being admitted to hospital because of my mental state at some point. Tbh though I'm really confused, I know the HTT keep asking me if i want to go in and my two social workers suggesting it, but i had a home visit from my dual diagnosis worker and then later spoke to my sw and im really confused as to whether that 'want' me in hospital or whether im actually going on. I mean, I agreed, because she said she doesnt want things to get worse and get sectioned but im just lost and don't know whats happening.

Im really quite scared if I have to go in. I've been many times before but I hate it there and honestly thought i wouldnt end up there again. And in my mind, when you leave hospital, you have to recover from the admission, if that makes sense to anyone. And dont want to be around all the sick people. despite having 4mgs of clonazepam throughout the day yesterday, yesterday evening i ended up pacing/crying/punched the wardrobe/kick the bin and was very close to smashing a guitar. i dont want to go in there and get so agitated that i hurt myself as im trying really hard not to self harm and i dont want to trigger selfharm even though hospital is meant to be a safe place. I guess im just frightened. But i dont even know for sure yet?

I trust the HTT consultant and I do worry I will go in and the psych will never have met me and he/she messes things up. Fed up.

Also worried as the HTT have lost a lot of staff recently so sometimes people I don't know come here or when i go there and its really hard to talk as they dont know you.

I dont know. :/

I'll update this when i find out what is actually happening. Kinda feel in my head like people will read the sentence above about updating and be like 'why would she think we even give a **** as to whether she updates or not' :(



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Old 26-08-2015, 09:08 AM   #19
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If they're all recommending hospital then maybe it's not a bad idea? I know you hate it in there, after all, they aren't the best places to be!

I can't speak for everyone else but I care and of it helps you to update then I'm more than happy to read and reply :)



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Old 26-08-2015, 09:35 AM   #20
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Thank you Beckie, that really does mean a lot to me.

I'm just confused really. My social worker was trying to talk to the bed manager and i just dont know whats happening. I think if they find a bed i'll accept it because im not coping and im getting in a lot of distress regarding certaint things. Notting Hill Carnival is this weekend and I just can't deal with it, sohopefully they find me a bed and hopefully in my normal hospital.

I just keep thinking about being trapped in there. But my social worker did say she would be proud of me if i go in informal. Hopefully the HTT are familiar faces today! Sooo stressed out with whats going on and what im being subjected too :(

The plan is to start the depot and when they feel its the right time, reduce the clozapine slowly with the aim to stop it and also have aripiprazole at possibly 10mg. Thats there plan, and I'm fine with it. What if i go in and some new dr messes it up?

Sorry I'm just worried. Maybe they will turn round and say i dont need to go in?

I'm finding it helpful to have a place to ask questions and also get some stuff of my chest and the replies have been really supportive so thank you



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