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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To expect a consultant psychiatrist to know about new medications?

88 replies

dontrunwithscissors · 05/02/2016 13:17

Background: I have bipolar 2--98% of my problems are with low mood. I'm taking a combination of 3 meds, which generally work well. However, the antipsychotic (Quetiapine) causes awful joint pain and muscle weakness. I take 3 different painkillers, but I am still in pain every day. At its worst, I have to crawl up the stairs and struggle to walk. I've tried switching to other medications, but they all caused even worse side effects and/or weren't effective. My psychiatrist has said there aren't any other medications that are likely to work as well as the Quetiapine. So I'm stuck between being depressed or being in pain. It's because of these problems that I've been keeping an eye out for new medications. It seems like the only hope.

So, I'm aware that there's a new antipsychtoic called Latuda. It's licensed in the USA for schizophrenia and bipolar depression. It's licensed in the UK for schizophrenia. It sounds very promising in terms of relatively few side effects. I saw my pdoc last week and asked her what she thought about Latuda and if there are any plans to apply for a license for bipolar depression in this country.

She'd never heard it. She had to ask me how to spell it and then looked it up online. She's a big consultant in the Trust. AIBU to expect a consultant psychiatrist to at least be aware of new medications available? I appreciate that services are under incredible pressure, but surely there should be up-to-date information on medication?

OP posts:
UnusualPolarBear · 06/02/2016 16:11

Oh really? Its not had that effect on me at all, so weird how different people are affected. That's a shame :( I really hope you find something that helps you soon xx

dontrunwithscissors · 06/02/2016 16:15

Sad yeh. The pain was worked its way to my fingers recently. The quetiapine dose has been going up and up over the last year---I've had 3 admissions. I'm currently at 775mg. The pain gets worse with each increase & im getting desperate.

OP posts:
lougle · 06/02/2016 16:28

"LATUDA is an atypical antipsychotic for the treatment of:
• Schizophrenia (1.1, 14.1)
• Depressive episodes associated with Bipolar I Disorder (bipolar depression),
as monotherapy and as adjunctive therapy with lithium or valproate (1.2, 14.2)." LATUDA Full Prescribing Information

mamadoc · 06/02/2016 16:30

I'm a psychiatrist. I know about lurasidone but I didn't know the trade name was Latuda. I rarely know the trade names of any meds as we are not allowed to prescribe by trade name.

I have never prescribed it however because

  1. Until it gets NICE approval and gets on the trust formulary and the CCG list I need to ask for special permission on a named patient basis to do so. This is largely due to the cost.
  2. There's always a load of hype when a new medication comes out. All the initial trials are drug company sponsored. Trials are not real world situations. The real benefits and risks/ side effects will only be one known over time. Every time a new med hits the market it's the best thing since sliced bread then over time the dust settles and it finds its place.

Bipolar depression is a tough nut to crack and a big problem. Drug companies are busting a gut to get licences for this indication. A few years back lamotrigine was going to cure it then it was quetiapine and then aripiprazole. Maybe lurasidone will be it, maybe not.

lougle · 06/02/2016 16:31

That said, I do hope that any treatments that haven't already been considered can be, because you shouldn't have to trade off one set of symptoms for another.

UnusualPolarBear · 06/02/2016 16:34

Sounds awful :( I've tried lamotrigine, aripiprazole, carbamazepine , but now im on quetiapine, procyclidine and sodium valproate and touch wood seems to be ok for now. Quetiapine alone wasn't enough to hold me steady, but my main problem is the ups not the downs xx

dontrunwithscissors · 06/02/2016 16:40

I take quetiapine, lamotrigine and Agomelatine. I got special funding for the Agomelatine (not NHS funded in Scotland). It worked amazingly well---no side effects and no highs since I started it. Everything was fantastic for some time until the joint pain became too much and I tried to switch to another antipsychotic. It didn't work and completely destabilised me. It's been one episode after another since then. Theyve been betting worse each time with more psychotic symptoms. So I'm stuck on the quetiapine. I just can't afford any more time off sick.

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mamadoc · 06/02/2016 16:58

IMHO and that of many colleagues lithium is the best drug for bipolar. People are scared of it but the side effects are no worse than lots of other drugs really and is has consistently proven to be very effective in trials and in many years of clinical use.

Honestly if I had BPAD I'd take lithium, psychosis low dose haloperidol, severe depression or anxiety clomipramine. These are old school, way off patent, cheap as chips and no drug company promoting them but they work. They have side effects but all effective drugs have side effects. I am unimpressed with the hype over 2nd gen antipsychotics which is mostly drug company profiteering. Research trials such as CATIE prove that they are no more effective than 1st gen and no better tolerated.

Disclaimer: I do not in fact blanket prescribe my favourite drugs to all my patients because it's always a risk: benefit trade off and people have different preferences. It's just that for myself those are what I'd choose.

dontrunwithscissors · 06/02/2016 17:10

mamadoc lithium was the worst med I've tried. I was sick 4-5 times a day, shook so badly I couldn't hold a cup of tea, slurred my words, had poor balance (fell over a couple of times), had such unquenchable thirst I was drinking 9 or 10 pints of water a day and still felt unbearably thirsty. This was in a blood level of 0.45. Mood-wise, it turned me into an emotionless zombie. I didn't feel anythingnothing. My DD hurt herself quite badly at one point and I felt nothing Just looked at herno response. I took it for 6 weeks and it just got worse. Horrific.

My pdoc now realises that I tend to have pretty extreme responses to meds. (And 'strange' responses, in her words.) After seeing her for a long time, she figures anything is possible when it comes to how I respond. That's why she (and I, TBH) are reluctant to change meds. The plan is to go for above-maximum dose use of Quetiapine if it comes down to it. But then that means more pain.

Can you tell that I'm really fucked off with this whole bipolar lark?

I'm doing well at the moment & just clinging to the hope that with a bit of stability under my belt, I can begin to drop the quetiapine dose.

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Wardrobespierre · 06/02/2016 17:30

Oh gosh op. That sounds so tough.

My Dad has BPD and is on tegretol, respiradone and something else. He's stuck in a cycle where the meds cause side effects so he takes stuff to combat that but then they cause side effects and so on. So occasionally they try a new BPD med and it doesn't work and several debilitating episodes later he's back to tegretol and respiradone and side effects a go go.

mamadoc · 06/02/2016 19:28

Ok fair enough sounds like you have tried a lot of the standard approaches. I can absolutely understand why you would want to try something new. Of course the Holy Grail is an effective drug with no side effects but I doubt it is possible it'll always be a trade off.

I hope this wouldn't cause you to lose trust in your dr. She sounds like she knows you well and has been willing to try new meds. I guess I was trying to say that newer is not necessarily better in the case of psych meds. The skill isn't just in keeping up with the latest meds it's in evaluating them against all the other choices available and selecting something likely to suit the particular person.

I would actually worry more about a dr who was too willing to go straight for the latest thing because usually it will turn out to be less effective and have more side effects than the company claim. With a new drug there are more risks because often rarer side effects are only recognised when it hits the open market. There are very good reasons not to be an early adopter.

fanks · 06/02/2016 19:48

Have a look at pregabalin

dontrunwithscissors · 06/02/2016 19:54

Pregablin is more for anxiety, I think? I was told by a previous pdoc that it's not particularly effective as a mood stabiliser--I'm not sure how that aaccurate was. Unfortunately, I think I need an antipsychotic in the mix, which limits the choices.

OP posts:
fanks · 06/02/2016 19:58

for the right people it can be a marvellous mood stabiliser with the added bonus of helping neuropathic pain (which we know is higher in people with mood disorders).
I've seen it work wonders when typical mood stabilisers failed.
Just might be worth looking at.

fanks · 06/02/2016 19:59

And it has an antidepressant effect.

dontrunwithscissors · 06/02/2016 20:06

Thanks fanks (it rhymes!) The last few epsiodes have had psychotic symptoms so the message has been I need an antipsychotic. The last epsiode was fucking awful Sad with delusions and hallucinations. I've only had bipolar for 4 years since DS was born. The psychotic stuff has just started in the last year.

OP posts:
fanks · 06/02/2016 20:12

It must be so frustrating!

Pregablin and quetiapine work well together and titrate quite nicely so in the mean time it may help with pain and allow quetiapine to be reduced abit. Just food for thought.

I really hope you get some relief soon though OP.

dontrunwithscissors · 06/02/2016 20:39

Sorry, just thinking about the suggestion of pregablin--is it an anticonvulsant? I thought you can't take two anticonvulsants? (I'm on lamotrigine and Agomelatine as well as quetiapine). If I could just get the Q dose down to the 600mg range, it would make a big difference.

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LovelyBath · 06/02/2016 21:56

I think I heard that olanzapine with fluoxetine is sometimes used for bipolar, could that be worth a try?

dontrunwithscissors · 06/02/2016 22:04

Thanks for the suggestion lovelybath, but olanzapine is one I've already tried and I already take an antidepressant (Agomelatine).

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stumblymonkey · 06/02/2016 22:07

Just to be aware...you can't take 5-HTP in conjunction with any anti-depressant...

AliceInUnderpants · 06/02/2016 22:27

Just to be aware...you can't take 5-HTP in conjunction with any anti-depressant...

That's not true. It can have major interactions and is generally avoided, but if you are aware of, and are being monitored for, symptoms of serotonin syndrome, it is possible to take with no adverse affects.

AliceInUnderpants · 06/02/2016 22:30

I take 5-htp alongside duloxetine (and tramadol, which is also contradicted) with no bad affects.

dontrunwithscissors · 06/02/2016 22:34

I would never risk taking anything like that with bipolar. Even omega 3 (noted for its antideprssnat effect) sent me high. 5 HTP could potentially make a bad situation even worse.

For those who aren't aware---antidepressants in bipolar can make things much worse by triggering mania or hypomania. That's what makes treating bipolar depression so much harder.

All the other antidepressants I tried before Agomelatine sent me high & very poorly. I'm certainly not giving up on the Agomelatine. Far too risky to be messing with any other antidepressants.

OP posts:
AliceInUnderpants · 06/02/2016 22:39

Sorry I was just responding to the comment stumblymonkey made about the two drugs together. I admit I have no experience of bipolar. Good luck and I hope you can find a treatment that works for you soon.

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