duloxetine anyone ??

New diagnosis and before diagnosis
1

Hi all - sorry but it’s me again!

My GP has prescribed me duloxetine 30mg for neuro pain. This is my 5th day on it and I don’t know how I feel about it.

On the positive side It seems to have calmed me down a bit - ‘flatlined’ me to be honest - I think I like the feeling because I’ve been rather distressed over the last few weeks with everything that has been going on! I’m a bit ‘spaced out’ on it.

On the negative side It doesn’t seem to have stopped the aching/burning pain, pins & needles or stiffness or any of my other symptoms really! I’m not sure about side effects like increased fatigue as I’ve been so bad anyway I just can’t tell to be honest - certainly nausea has increased and a dull constant headache added to the mix.

I’ve been reading reviews on duloxetine it and it seems to be great for depression - high scoring but very mediocre results for pain etc.

Most of the reviews also talk about horrendous withdrawels which is worrying me.

The trouble is I’m not suffering from depression at the moment - I did suffer with it several years ago so I know what depression feels like for me.

I saw my other GP yesterday (I’m seeing two at the mo!) and she said the other one had prescribed it to help me cope with my symptoms and what I’m going through etc.

I also mentioned that the instructions say that Duloxetine should not be taken with uncontrolled glaucoma and as I have just been diagnosed & it’s uncontrolled at the moment I’m a bit concerned.

She asked if I want to stop taking it but I told her I’m so desperate I’ll try anything!!

I’m just not sure what to do to be honest! I can’t think straight about it - I want to take it if it will help me - but at the same time I’m wary of taking drugs unecessarilyand causing more problems in the long run!

I also have a gut feeling that as I’m undiagnosed wouldn’t it be better to see how this episode runs it’s course?

Any advice yet again would be more than welcome!!

xxJennyxxx

2

Hi Jenny,

I’m sorry I can’t help on the specific duloxetine point, as it’s not one I’ve tried.

However, I’d just like to say that I can’t see any virtue in leaving symptoms untreated, in the belief this will somehow assist diagnosis.

I don’t think it makes a blind bit of difference - particularly if it is MS. Treating symptoms won’t mask or destroy any of the relevant evidence.

I would be slightly concerned that you have two GPs who seem to be saying different things. The prescribing doctor has said you are not being prescribed duloxetine for depression, but the other has said you were prescribed it “to help you cope”, which does tend to imply there’s a psychological dimension to the reasons for prescribing.

Personally, I’m not in favour of people who are NOT clinically depressed being prescribed ADs to cope with adverse life events. And yes, I have found them very unpleasant to quit (not a psychological addiction, in the sense of craving them, but getting physically sick when I tried to stop or cut down). Having said that, I know ADs are prescribed with some success for the management of pain in conditions other than depression, so I think it’s important to be clear about what you’re really being prescribed them for.

If it’s genuinely to help with symptoms, then it’s worth a try - but you don’t seem to be having much luck with that.

If it’s to “calm you down”, well, only you can tell if you think that’s a valid trade-off or not. You do report feeling a little better, but offset against that is the glaucoma worry, plus the possibility of withdrawal effects when you do decide to stop. I think this one comes down to what do you really want to do about it? You could ask to come off it, and to try something more directly targeting your symptoms, rather than your state of mind?

As I understand it (checking very briefly on Wiki), duloxetine has been approved for treatment of musculo-skeletal pain, but is NOT indicated for nerve pain. If the latter is your main problem, it’s not a great surprise it doesn’t seem to do much.

Whether you still want to take it anyway, for the “mood stabilising” effects, is a decision only you can make.

Tina

x

3

I due to start this soon I hope to god it works as Im at the end of my tether

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Hi Tina - thank you!

I thnk my gut feeling is not to continue with these - I think they are preety serious drugs to be experimenting with when I don’t really know what’s wrong yet - surely there are other more straightforward painkillers that will help with the neuro pain?

I asked the doctor for something for the stiffness, spasms and the debilitating fatigue - these are the things that are keeping me either in bed or on the sofa at the moment! Everything else, whilst unpleasant, is tolerable x

I did burst out crying in front of the doctor so perhaps he thinks I am depressed even though I assured him I’m not. I have definitely been stressed and emotional though perhaps thats not surprising.

When he prescribed it I even asked my family if they would be honest and tell me if they think I’m depressed in any way & they are all reassuring me I’m not - distressed yes - depressed absolutely not!

So - with the glaucoma risk of worsening and the failure so far to make any difference other than to make me feel ‘spaced out’ I’m going to stop them before they go too far!

Lally - there are lots of people they have worked wonders for xx I hope they work for you x Who knows I might be begging for them in the future!!

x Jenny xxx

5

Hi Jenny…sounds like youve made a good call on that one…am sure they could prescribe something more suitable …and that wont affect your untreated glaucoma…fingers crossed they can fix you up on that…its your body hun…and you know when its not right…

I think its completely normal that you have been so distresswed with all thats been going on, the uncertainty…and I dont reckon Ads would help that…there are other and better ways of taking control and turning things into aproactive and positive mind set…ADs can just make you feel numb…or so people have told me…I appreciate a balance isnt always easy to find…and am sure youll feel happier once you know for sure what you are dealing with re a dx…its not great feeling in the dark…and trying to also cope with changes that are happenning physically…

e x

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Hi Em x Yes I think so too! Yesterday I had a horrible sickly headache all day and I felt totally ‘spaced out’ and very ‘muggy’ - my stiffness was worse and I just felt that I couldn’t function at all!

So - I didn’t take the duloxetine last night and this morning I’m feeling ‘fresher’ - I can’t think of a better word to describe it!! lol

Granted I’m still as unwell as I was before I started them last week but at least I’m back on this planet!

My GP has signed me off work for another 4 weeks - I’ve stopped protesting, kicking and screaming and I’m now resigned to leaving work to sort itself out x

I’m sure the stomach churning stress of worrying about my job has not been helping!

I’m going to use these 4 weeks to relax as best I can and ‘go with the flow’ regarding any diagnoses. I think I’ve accepted that whatever is wrong has been here for a while and will probably be here for a good while longer too!

It’s time to get positive and to get planning!!!

xxxJennyxx

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hey Jenny…glad you feel more fresher today… my gp has upped my pregabalin and am feeling spaced out and a bit woosey this morning…but I know thats the meds not me…but add that to how I already am…and its not great…but as you say coming off yours is the best option for now…

Glad GP has signed you off work…I know its a pain.but she wouldnt do it if she didnt feel it was a must.its good to see youre turning things around…putting some things on the back burner and putting yourself first…wahey…and yes whatvere is wrong…its there…and as you say adjusting to this is a good idea and making changes and accepting it is a very positve step forward…when do you go back to see neuro re tests? ooh and dont foregt to treat yourself…whatever will make you feel good…

Em

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Hi Jenny

Yes, I was prescribed Duloxetine 30mg for neuropathic pain. However, it really upset my stomach. I had the ‘runs’, plus felt really sick all day and all night, so didn’t get hardly any sleep.

I’ve tried it on 4 different occasions now, hoping to persevere, but each time was the same, so have decided not to continue. I’ll keep to the Pregabalin which is better for the pain.

Think you’ve made the right decision in discontinuing it. Each person is individual in how they react to drugs, so we just have to try it and see.

Do hope you begin to feel a bit better real soon.

Bren x

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Hi Jenny,

Love your last comment…Time to get positive and start planning.

I’ve had similar issues with my medication which I have decided to come off as well. I’ve been taking Gabapentin for nearly

3 months and I don’t think it has made any difference at all. What I found was that by changing my diet and my attitude I

have felt far more positive about the future. Just eating better has given me a lift and made me feel that I am doing

something to help myself.

I am currently waiting on a confirmed diagnosis of MS and I have an appointment next Thursday with the nero so will so

what that brings. Whatever I have decided that we just need to keep on keeping on :slight_smile:

ps Healthy eating is bloody expensive. Doesn’t seem fair.

Anyway good luck.

G

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Hi All! Thanks for your replies!!!

Em – they said the brain MRI results should be back in 2 weeks which should be next Friday – it’ll go to my GP as I still haven’t had an appointment date with the neuro! The GP has rung & sent a letter to him chasing it up. I’ve tried ringing too but his secretary is on leave until the 19th March and the voicemail only gives instructions for emergencies!!

Bren – I always react to any kind of drug with nausea, headache & rashes! It’s a worry when you need them & just can’t find anything to suit! X

Grazo – I’m in the same position re diagnoses and I also feel better when eating healthily. Unfortunately I’m a ‘comfort eater’ which means whenever I am unwell or things go wrong etc I reach for the choccies & home made chips!! Not good but totally compulsive!! Uh oh!!

XXJennyxxx

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Hey hun…good re MRi results… I think the report can take up to 10 days to get to neuro and its not common for them to write to gp until after you appt with them…but def worth chasing the neuros…get gp to fax them also… I know its a pain but being a pest is the only way sometimes…lol

keep smiling…

emx