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DULOXETINE?

31 replies

Bluebell66 · 26/09/2018 15:13

I have been suffering with chronic pain and Generalised Anxiety Disorder for the last five years following the death of my husband. I am currently taking Amitriptyline which is no longer having any effect. Over the last three months my symptoms have got much worse. Does anyone have any experience of DULOXETINE as this looks like my next option.

Many thanks in advance.

OP posts:
lyrebird1 · 26/09/2018 18:01

Hi, so sorry to hear about your husband. I take duloxetine for painful nerve damage in my leg after spinal cord surgery. I didn't get on with amitriptyline either due to side effects. I also take pregabalin, which is used for anxiety and nerve pain.

I have found the duloxetine very helpful for nerve pain, and the side effects haven't been too bad. I initially had some weight loss, although it settled down after a little bit (and extra chocolate!). I have had some problems with urinary hesitancy, although I do have problems with my bladder anyway due to the damage to my spinal cord. The side effects haven't outweighed the benefits for me, although I have found that the pregabalin has been a better drug (and the combination with duloxetine better still).

Are you under a pain management team? My consultant has lots of great ideas that the GP doesn't think of - I have lidocaine infusions for pain which are brilliant. They also run courses to help with emotional aspects of pain, and provide access to health psychologists (I see one). I hope the duloxetine works for you, but there is lots to try if not - good luck.

Pandamodium · 26/09/2018 18:12

I found it really effective for anxiety I can't comment on how effective it is for pain. Was a bastard to come off but I was on it a good few years.

Bluebell66 · 27/09/2018 05:56

Many thanks to you both. I was under the pain management team when my husband became ill so I had to stop going. It's a vicious circle, I suffer with severe anxiety and the chronic daily pain makes it worse.

PANDA - Did you have any side effects from the DULOXETINE?

My anxiety is making me too nervous to try it.

OP posts:
Pandamodium · 27/09/2018 08:12

None that really stand out, I did have some broken sleep but I don't know if that was withdrawals from my old AD or the duloxetine it's self.

I've been on every AD and mood stabiliser known to man if I had to come off my amitripiline I'm on now for whatever reason I would request the duloxetine I only came off it as I was pregnant.

mypointofview · 27/09/2018 08:14

I got very very thin while taking it. Became manic when coming off it and had to do it over the course of years. Dr filed a report.

Pandamodium · 27/09/2018 08:17

Also I don't know if this is common practice but my GP has always been happy to prescribe very short term prescriptions for anti-anxiety meds, painkillers and/or sleeping pills if I have needed them the first three weeks if any side effects occur. You could ask if this is an option if your worried about the anxiety getting worse before it gets better.

Bluebell66 · 27/09/2018 11:00

PANDA - Many thanks, that's all really helpful and greatly appreciated. I will ask him about help during the initial weeks. I can't tolerate SSRIs but DULOXETINE is an SNRI so I'm hoping I may have more luck with it.

MYPOINT - Sorry you had a bad time coming off - I had the same when coming off Seroxat - it was dreadful.

OP posts:
lyrebird1 · 27/09/2018 21:05

I always feel quite anxious about starting new medications too. One short term medication that helped me in the past for anxiety is propanolol. It is a beta-blocker so it stops the physical symptoms of anxiety like the racing heart etc.

Twotabbycats · 27/09/2018 21:45

I have taken this twice, both times I came off it for side effects. The first time wasn't too bad, I was just hot and my blood pressure was going up.

The second time was awful. I felt like I had flu - hot and cold chills, nausea, dizziness, could barely get up from the sofa. And I had terrible shaking. This all went on for 6 weeks until I decided enough was enough. I am on a lot of other meds though, including pregabalin and opiates - the doctors think it was an interaction with the opiates.

When you say you can't tolerate SSRIs, what are your side effects? I actually developed the shaking on Prozac, had 6 months off, then tried the duloxetine because I wasn't doing well on nothing. Afterwards I found out that I shouldn't really have tried it as the likelihood of the shaking returning was pretty high.

I have chronic pain too, it worked really well for the pain Sad

I am only allowed Valdoxan now, no other ADs - it's moderately successful for depression and slightly less so for anxiety... does nothing for the pain.

Can I be cheeky and hijack your thread to ask @lyrebird1 how you get on with the lidocaine infusions? I have just been offered these but have read some slightly scary stories online. Glad they have helped you but did you get any side effects? Do you know how much you have and how often do you have them? Thank you Smile

lyrebird1 · 28/09/2018 00:19

Hi @Twotabbycats I have the lidocaine every 8 weeks and have 250ml (about 4ml/kg) over 90 mins. Side effects wise - fatigue and irritability for a couple of days, also stinging where the nerve damage is. Pain gets worse before it gets kicks in but definitely worth it for me.

I wouldn't worry too much about the scary stuff. My consultant was showing off to a medical student for my first one and detailed every way you could possibly die! However, the conclusion was, the warning sign for anything dangerous was a metallic taste so you could just turn off the pump.

Pandamodium · 28/09/2018 12:18

@Bluebell66 i can get the anxiety over starting them completely, the listed side effects are like something from a horror film sometimes.

I tell myself even if it's shitty starting them it's three weeks (not sure if doctors still say give it three weeks for them to settle?) of my life where I might feel a bit shit for hopefully a long term improvement.

I try and see it as an investment, that method may not work for others but I manage to talk myself into that way.

A PP has mention beta blockers, I had propropronol (sp) which really helped with the physical anxiety symptoms.

Gabepentin and Pregablin can both treat anxiety and nerve pain although I think only the pregablin is licensed for both.

Bluebell66 · 28/09/2018 12:57

Thanks PANDA. I have some pre- gabalin sitting in the cupboard but I can't bring myself to take it. I have such a history of intolerance to drugs like this, I feel bad enough as it is, I just can't face feeling worse if I get side effects.

I have got propranolol so will use them if I need to. I'm seeing doctor this afternoon, so will see what he says re trying the DULOXETINE.

OP posts:
Pandamodium · 28/09/2018 16:29

Oh poor you an intolerance must make it even more nerve racking.

(DH once grew breasts and started lactating on a new antipsychotic Confused he doesn't change meds or take anything new unless completely necessary)

I hope your appointment goes well, hopefully the doctor can put your mind at ease somewhat.

Bluebell66 · 28/09/2018 17:28

Oh dear, your poor DH PANDA! Just back from doctors and I'm really upset tbh. His attitude was "what do you expect me to do about it? There's a lot going on here". Long story short, I'm having blood tests on Tuesday and he's given me a prescription for DULOXETINE which I will start on Tuesday- very nervous about it. Re the hormonal issues, he told me I'd be better off seeing a lady doctor, so I've booked an appointment the week after my blood tests, should have the results by then.

OP posts:
Pandamodium · 28/09/2018 17:59

Could you ring and ask if any GP in your surgery specialises in MH? I have found both my previous surgery's had one GP who had worked in that specific field prior.

Bluebell66 · 28/09/2018 18:37

Good idea Panda, I hadn't thought of that. I will ask when I go for my blood tests on Tuesday. I'm still trying to get my head round his attitude. Made me so angry.

OP posts:
Pandamodium · 28/09/2018 20:31

A lot of people don't understand mental health doctors included. I think it's more ignorance then not caring.

Sorry you've had a bad time, hopefully another doctor will have a better understanding of what your going through.

lyrebird1 · 29/09/2018 02:41

Had a thought about the duloxetine and your anxiety about starting it. Is your pharmacist friendly? At my GP surgery you can have a telephone call from a community pharmacist - they are more knowledgeable than the GPs about side effects etc. Maybe it would set your mind at rest a bit.

I am sorry that you saw an unsympathetic GP. But better that he is sending you to see someone he thinks can help you that do a bad job himself. I feel like female doctors must deal with nothing but hormones and lady parts, seeing as men seem so incapable!

Pandamodium · 29/09/2018 14:45

I just have a female GP to start with, it cuts out the middle man.

I'm lucky mine is amazing, I get on well with her and trust her judgement completely. When I've been very poorly (I have bi-polar) when she said I needed inpatient treatment I went in at her request. I wouldn't of gone in for anyone else.

I think it's important when mental health is an issue to have a HCL you trust. Hopefully OP you can find someone put your mind at rest.

Bluebell66 · 29/09/2018 15:25

Thank you both so much for your support. The lady doctor I'm seeing is lovely, so I'm hoping for better luck when I see her. My pharmacist is also lovely. I told him how anxious I was to start the DULOXETINE and asked if I could cut them in half to begin with, unfortunately they're capsules and not tablets so this isn't possible. I'm starting on 30mg, the lowest dose, so will just have to man up and start them. I'm going to start them on Tuesday as I'm away Sunday and Monday. I'm just praying I can tolerate them and they ease the severe anxiety and chronic pain I've been living with for months.

OP posts:
RandomMess · 29/09/2018 15:35

They come in 20mg strength too?

I took them for many years for anxiety/depression, they didn't help and it was hell getting off them!!!

I opened the capsules tipped half out remade when coming off them so that's an option for you? I believe for pain management 30mg is the optimal dosage so no need to go higher or perhaps 20mg twice per day?

If I forgot to take mine the side affects were horrific - shakes, brain shuddering, woozy allsorts hence tough to come off and slicing them like a drug dealer- had to get special scales!

If you have exhausted other options then they are worth trying Thanks

Pandamodium · 29/09/2018 16:05

The mental health board on here is really helpful, if you need some support while starting them you will get it. There's a lot of knowledgeable posters on here.

Bluebell66 · 29/09/2018 16:14

Thanks Panda, I will keep that in mind.

Random - sorry they didn't help you and you had such a bad time coming off them, I've heard other people say that 😐

OP posts:
lyrebird1 · 29/09/2018 18:59

I recently reduced my pregabalin and that was hell! Apparently it takes the brain a while to readjust to making the correct levels of chemicals again, which is why you can have trouble coming off tablets. Tapering slowly is the way to go.

Maybe you could start with 1 capsule a day instead of 2, perhaps at night so you will be asleep whilst your body gets used to any side effects. Btw I take 20mg twice a day.

TwittleBee · 29/09/2018 19:06

Hi OP.

I take Duloxetine along with quintepine for my anxiety disorder. I find them both amazing and actually only thing that has not given me any side effects and actually helped me.

I'm on the 30mg dose for Duloxetine too btw.

I've also had to come off it when I fell pregnant with DS and had no issues what so ever coming off either.

Give it a go. Everyone is different. Good luck x