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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Desparate. WTF do I do about unavailable medication and bipolar?

35 replies

historyrocks · 07/12/2018 11:38

Sorry that this isn't really an AIBU, but I'm desperate. Sad

I have bipolar disorder and one of my medications is an antidepresant named Agomelatine (brand name is Valdoxan). This is an unusual antidepressant and one that isn't normally funded by NHS Scotland (whereas it is for people in England). There was a mess up with my medication so I only have 2 days' worth.

Apparently there's a manufacturing problem and my normal pharmacy doesn't have it in stock and doesn'tknow when it will be available again. I've rung pharmacies as far as 70 miles away, but no where has any in stock.

WTF do I do? Having to come off it cold-turkey would be absolutely disastrious. I get severe psychotic lows and it doesn't take much to throw me off course.

Please, any suggestions? I've managed 4 months stability and I'm in tears thinking that it may be lost due to this.

OP posts:
TheLittlestLightOnTheTree · 07/12/2018 11:41

back to the gp.....see if theres an alternative?

Sycamoretrees · 07/12/2018 11:41

Have you spoken to your GP? They may be able to help, or at least advise you on what you should do next. Have you tried the online pharmacies?

AnchorDownDeepBreath · 07/12/2018 11:42

Contact your GP and they'll prescribe a similar drug. There is one that is almost identical that they've prescribed when this has happened in the past; but I can't remember what it's called.

Get an emergency script for that today; and get the pharmacy to contact you as soon as they have supplies. That's all you can do. Going cold turkey would be really risky; you can't wait this out because there's no estimated stock return date yet Thanks

historyrocks · 07/12/2018 11:49

There are no alternatives. It's a unique form of antidepressant, and there's nothing that works in a similar way.

I've rung my CPN and waiting for her to get back to me, but the fact that it's not prescribed in Scotland (unless you get special permission, as I did) means that it seems no where has it in stock.

They can't tell me when it will be available. All suppliers have it as out of stock as there's a manufacturing fault. ANd I've just realised I only have 1 days' worth of tablets. I'm not going to have much choice but go cold turkey if i can't think of any other way to get hold of it.

OP posts:
NicoAndTheNiners · 07/12/2018 11:52

Do you know anyone in England you could post the prescription to and they get it and post it to you? It doesn't have to be you personally who goes to the chemist.

Dotty1970 · 07/12/2018 11:55

First of all halve it, that's what I did to lessen side effects.

Muddledupme · 07/12/2018 11:57

I've had this problem before and my local hospital pharmacy had run out. My cpn contacted the home treatment team who were able to get some from the pharmacy at my local inpatient ward. I hope you get it sorted soon as it's very scary when you know how quickly it can go wrong.

agedknees · 07/12/2018 11:58

Are under a hospital consultant? Hospital pharmacy may have it if u can get a hospital script.

EmeraldVillage · 07/12/2018 11:59

I would think about where would be easiest (or least hard) to get to know England perhaps by train and call pharmacies there. It would be an expensive solution but might work.

Alternatively there are various reputable online pharmacies that do NHS prescriptions and post that you could see if have stock?

Bombardier25966 · 07/12/2018 12:02

As above there is no medication near identical to agomelatine. There's melatonin but it's not the same at all.

Your CPN should be working out a plan for you. I doubt the GP will have any experience of agomelatine to be able to help you. I'd send you some of mine but I only have a supply up to the day I next see my CPN.

FooFighter99 · 07/12/2018 12:02

www.lloydspharmacy.com/en/valdoxan-25mg-tablets

is this any use OP? can you order it online and get it fast track delivered?

DGRossetti · 07/12/2018 12:04

Be careful using the Lloyds website for reference. They list loads of unavailable medicines.

Bombardier25966 · 07/12/2018 12:12

For the future, can you get it dispensed via your CPN? I have to get it that way, whilst it's licensed down here GPs can't prescribe it. I know the way it works here the meds are ordered a month in advance, so they know if there is a problem long ahead of the due date.

Also there's no mention of a shortage on the SPS site, which lists all shortages. I wonder if this is more an issue of conventional pharmacies not being able to get it, but the specialist services still can. If so, your CPN should be contacting their pharmacy.

historyrocks · 07/12/2018 12:13

@foofighter, that would be great, but it's only available in England.

I think I can use my Scottish prescription in England, though, and just pay the charge. It would be possible to send DH on a drive south to the Newcastle area if there's any in stock down there. DH is currently ringing around pharmacies.

I'm hoping my CPN gets back to me quickly. I'm doubtful whether the hospital pharmacy will have any. I've had to bring my own supply whenever I've been admitted.

I'll certainly halve the dose tonight. I know how quickly my mood destabilises with just the tiniest changes in medication. Agomelatine was a bit of a lifesaver (literally) for me.

OP posts:
historyrocks · 07/12/2018 12:17

@bombardier, I usually put a repeat prescription request into my GP and it comes from our local Boots. They've always had it in stock.

What happened is that i put my request in when i had 7 days' left (GP won't issue a repeat prescription any ealrier than this). The system messed up and didn't register the request. I didn't find this out until 4 days later.

I gave my prescription to Boots yesterday and emphasised that I needed the Agomelatine urgently. It was only when DH went to collect everything this morning that they said there's a manufacturing problem. I've spoke to tons of Scottish pharmacies and they're all saying the same thing.

OP posts:
redsummershoes · 07/12/2018 12:19

contact the company that makes valdoxan directly?

www.ema.europa.eu/medicines/human/EPAR/valdoxan

Desparate. WTF do I do about unavailable medication and bipolar?
historyrocks · 07/12/2018 12:25

Thank you for the suggestions. DH has managed to find a local pharmacy that can send some stock up from Warrington, but it won't get here until mid-day on Monday.

All I can do it take a half dose tonight and tomorrow, and nothing on Sunday night.

I'll still try and speak to my CPN today. I'm ufalready on the edge of a low so really hope I don't suffer any consequences.

OP posts:
citiesofbismuth · 07/12/2018 13:57

Could the cpn help you get a couple of tablets from a hospital pharmacy?

historyrocks · 07/12/2018 14:17

I’m still waiting for my CPN to return my call (just rang to emphasise it’s quite urgent). I don’t think the hopsital pharmacy will have any as I’ve always had to take my own when I’ve been admitted. My CPN is usually very good about returning calls so it may be that she’s out seeing people and won’t be due back in today.

I’m feeling bloody frustrated with myself that this is making me very tearful and stressed. I hate being so dependent on medication Sad

OP posts:
historyrocks · 07/12/2018 14:20

Here’s my plan if anyone sees it and cares to comment on if it seems the best way

  • take zero Agomelatine tonight, add in 50mg PRN Quetiapine
  • take 25mg for tomorrow and Sunday nights (which is half the normal dose). Keep with the extra Q.
  • Hope that the pharmacy gets the stock in as promised on Monday.
OP posts:
NerrSnerr · 07/12/2018 14:23

Can you call the CMHT back and ask to speak to the duty worker?

Kikithewitch · 07/12/2018 14:28

I’ve just checked my pharmaceuticals wholesaler AAH and they have stock available to order. My pharmacy is in England

Chouetted · 07/12/2018 14:31

I've been in this situation (different antidepressant) , and the only thing that got me out of it was contacting everyone and anyone I knew, and asking them to ring their local pharmacies for me. I even had a few European people checking on the continent! In the end I got hold of some three hours away.

À half dose is not a bad option. Sleeping through the weekend is something to consider.

Chouetted · 07/12/2018 14:35

Also, if you're not at risk of overdosing, speak to your GP about having an extra box at home to avoid this happening again. I still feel anxious every time I go to pick up a prescription.

historyrocks · 07/12/2018 14:38

@kiki, it’s very strange as every pharmacy I rang (spread all across Scotland) said the same thing to me that they’d checked their suppliers and none of them had any to order. Perhaps it’s a regional thing.

It’s possible my CPN is going to be out of the building all day or even on annual leave. The reception doesn’t seem to know such things and will only take a message Hmm If she doesn’t ring soon, I will try to pull myself together enough to speak to the duty worker.

OP posts: