nefopam

[MyStar86]

Hi,

I just wondered if anyone has been prescribed Nefopam by their GP? Just spoke to my GP and they said they are unable to prescribe it in primary care….does that mean it needs to come from a consultant to get a prescription?

I’m confused as it’s not an opioid, it’s not addictive and doesn’t have any special warnings yet they can dish out morphine and gabapentin which both have warnings.

i am seeing my constant on Friday thanks to private care however I very sick at the moment so I am worried if I can’t get there I won’t be able to get the nefopam prescription.

I can’t take opioids, ibuprofen style meds, serotonin meds or gabapentin, pregablin, tramadol so basically I’m left with paracetamol which doesn’t do anything.

Please let me know what experiences you have had xx

[Rjb_88]

That is usually the case if they are prescribing it for a non standard symptom / issue, so the drug is only listed for certain conditions in primary care and needs a specialist to confirm it can be prescribed for anything else or for someone with other conditions or age etc.

I’m waiting to see my consultant again as I’m peri menopausal but because of my age the docs can’t prescribe HRT without the consultant saying it’s ok 🤦🏻‍♀️

If you’re seeing your consultant just ask if they agree and request that they put it in the letter that goes to you / on your record and then they’ll be able to prescribe it

[Purple_Badgers]

I got prescribed nefopam by my GP. I have heard that it’s relatively expensive, so maybe some CCGs have barred it for that reason? I don’t get on with codeine/morphine type drugs, so when I asked for something else stronger to deal with my increasing pain, Nefopam was suggested. It makes me too drowsy to drive, but at least it helps me get to sleep! For me, it’s gentle and takes the edge off things, so I can still function without feeling “high” or sleepy and without adding to my constipation problem.

I’m in rural Northamptonshire.

[MyStar86 in reply to Purple_Badgers]

oh that’s amazing thank you!!!! So it didn’t give you any bowel issues? I have massive bowel issues had endo removed from it but still agony had hysterectomy still agony. My poor back feels like it’s breaking.

I’ve contacted my consultant to see if he can do me a private prescription so I can get it sooner and tell the gp it’s ok for me to have save me being bed bound and losing my mind from the pain. I’m in agony I’ve cried so much but that only makes it worse I’m scared about bedtime after the awful nights I’ve had I just need a break as I’m at the limit to what I can handle now.

Thank you for replying xx seems crazy how they dish out dangerous drugs but not ones that are better for patients when they need help

[Purple_Badgers]

I haven’t noticed any extra bowel issues from taking Nefopam. I do take lactulose daily to keep things moving, but can still get constipated. I also take regular paracetamol and Naproxen, with a daily omeprazole to protect my stomach. It’s not perfect, as I still get bloating, trapped wind and indigestion too, but it’s mostly under control. I only touch codeine if I’m in loads of pain and absolutely desperate for sleep, as it knocks me out, gives me horrific nightmares and terrible constipation!

I hope you at least get to try Nefopam and hope it suits you. xxx

[Purple_Badgers in reply to Purple_Badgers]

Sorry, forgot to say I’m on Mebeverine as well. Taken 20 mins before I eat a meal, to reduce cramps (like a stronger buscopan).

[MyStar86 in reply to Purple_Badgers]

thank you for being so kind I can’t take naproxen and I’ve tried mebeverine before anti spasmodic drugs don’t help me I’ve had to use diazepam for the spasms but it doesn’t work much once you have used it for a while and I’ve basically been using diazepam plus sleeping tablets as pain relief but that doesn’t actually work when the pain is too extreme for it. I have osteoporosis and I was stuck on an mri machine for multiple tests on Friday and it feels like it’s broken my back on top of all my other issues it’s very scary as I’ve broken all my ribs before and couldn’t leave the house for 8 months and I’m only 35.

My anxiety is through the roof I can’t take much more I just can’t stop crying I’m so scared and worried I just need someone to help me. I will let you know what my consultant says hopefully I will hear tomorrow and he is lovely so fingers crossed. Codeine makes me vomit and I have tried all other pain meds even the nerve ones and I react badly no serotonin meds thanks to doctors giving me serotonin poisoning in the past that’s why I can’t tolerate pain meds it’s a nightmare 😭.

Sorry very emotional and scared it’s just awful xx thank you for helping qnd beint there it means a lot

[Purple_Badgers]

No worries at all. Makes me feel a bit better being able to support someone else through all this stuff, same as I have received lots of support and advice. All here for each other!

Do let me know how you get on with the consultant . Got my fingers crossed for you.

It’s exhausting being in pain and exhausting having to fight to be taken seriously. You deserve to be as comfortable as possible and you deserve to be offered every option available to achieve that.

I feel you on the sleep issue - I’m quite a tough cookie, but without a decent kip I quickly crumble! 😂 I often take sleeping tablets along with painkillers just before bedtime. (I probably should have checked that they were safe to take together actually… something to mention to my GP!)

[MyStar86 in reply to Purple_Badgers]

I probably wouldn’t mention that to the gp as I can tell you the answer now they will always say no as I’m guessing they are otc sleeping pills and they are never advised with painkillers but it’s difficult as we need them so it’s not really a choice without sleep pills I would be 1000x worse. However I know my mix isn’t too taking 2mg of diazepam plus 4 one a night sleep pills and I’m only 43kg and 5ft 6 so it’s not good but the body builds a tolerance so if I just took 1 it wouldn’t do anything and without any actual pain relief meds all I can do is try to sedate myself to which partially works till about 2am then it’s carnage like last night unfortunately.

My consultants secretary has been lovely I’ve always had a good relationship with her which helps she has been chasing him but as we couldn’t get anything back she has booked in for a telephone app on Monday with him so fingers crossed. I’ve also asked my rheumatologist sec but they are away till Monday so hopefully one of them will be able to help on Monday just the rheumatologist is nhs so it will take longer sending a letter to my gp etc so I’m hoping for the gynaecologist 🙏🏻 Just need some relief as it’s agony today has been hard after such a bad night doesn’t help after all the battering tests wise last week I’ve had a terrible flu on top so coughing is killing my back and tummy 😢. Seems life is always such a battle just wish the doctors could of prescribed it then I wouldn’t of had to suffer and gone through this week or hell but we have to roll with the sh*tty hand we have been dealt so I will just hope for next week.

What dose of nefopam do you take I saw that it’s usually 30mgx3 daily is that what you took? I might need less being so small I’m very sensitive to meds in tiny amounts but will take what I’m given and then I can see myself how I tolerate it if I ever get hold of it that is.

Massive hugs and thank you again cx

[Purple_Badgers in reply to MyStar86]

I started the Nefopam as 1 x 30mg, three times a day. When the pain increased and getting off to sleep was getting really difficult, I spoke to the GP who said I could take two when needed at night. Max dose is 3 x 30mg, three times a day. I’ve now settled at 2 x 30mg, three times a day. Or less if I am having a better day!

I’m tall and about 70kg I think, so bit of a different body type. It might have a bearing on how much they would allow you to take.

Hope your weekend is as comfortable as poss (or at least not as awful as could be!) xxx

[MyStar86 in reply to Purple_Badgers]

it wasn’t the best weekend being in loads of pain but survived it and now my rheumatologist secretary has come back and passed on my email so that’s one iron in the fire to help and waiting for my gynaecologist to call me now and hoping it will go well 🙏🏻. Last time I saw him was after my hysterectomy and he thought he had solved all my problems…..so I’m glad I’m not seeing him in person as I would cry my eyes out. I will let you know how it goes. Thank you again for your help xx

[MyStar86 in reply to MyStar86]

nope he won’t prescribe it as he doesn’t think the pain is gyne as he thinks the hysterectomy solved his side of my health battle 😭. Crazy when I’m waiting to see another endo specialist about possible endo on the diaphragm 🤬 hoping my rheumatologist can help otherwise I’m screwed I won’t touch the morphine etc so that’s just great nothing is ever simple he said he doesn’t know enough about the drug to prescribe it and would suggest a pain management specialist. Thanks for the help is all I could say and he just went on to take about my hrt and I wanted to scream but I didn’t I kept very calm and nice jusy bloody annoying and so unfair xx

[Purple_Badgers in reply to MyStar86]

Oh no, sorry to hear he’s not interested in helping. It sounds like he could do with researching both endo and Nefopam, which might make him a bit better at his job… but it’s never their fault/their problem is it? 🤬

Maybe the rheumatologist will be the one to listen. Let’s hope so! In the meanwhile, perhaps you could get an urgent referral to a pain clinic??

I hate that people are just left to suffer and pushed from pillar to post. Care for chronic conditions should be so much more comprehensive - preferably with the various specialisms actually communicating and working together!!! xxx

[MyStar86 in reply to Purple_Badgers]

I haven’t got my gp till the end of the month and getting an app with her is like gold dust so I will have to wait 😢. It’s just awful at the moment I’m fed up, I did think he wouldn’t be much use as this gyne put me on high strength oestrogen only hrt after my hysterectomy so that says it all and he didn’t understand when my pain got much worse for it. I have my gastro at the end of the week so I’m hoping he can help if the others don’t just such a nightmare they all go on about me needing pain management then when I ask for it no one can prescribe it 😡. I’m all over the place the gyne even forgot about my osteoporosis as he said oh we need to start you on dexa scans every two years…….I said I’ve already had one this year and my infusion is due next month he said oh why is that and I said because I have osteoporosis. I’m slightly fuming he could of just replied to my email saying he couldn’t help vs Charging a few hundred pounds for that pointless phone call sometimes private isn’t always better!!!

Will see what happens with the rheumatologist but I highly doubt I’m going to get any relief this week as the nhs side doesn’t move fast as he would do a letter to my gp 😢. It’s just all awful at the moment I know I’m difficult with multiple health issues as I had my gallbladder out 2010 then diagnosed with crohns 2015 and osteoporosis then endo and had lots of surgeries and then everyone thought the hysterectomy would solve all my problems but it didn’t do anything for me so it’s all a big mess I’ve very tired and weak from all the battling people consultant blames the other condition for my problems I hate it just need some relief I have no life and had to move back to my parents due to the pain I’m in and all the surgeries so all I want is for someone to help me and I was hoping for some pain relief that wasn’t a nasty opioid as I refuse to take what the gp is offering. Thank you for being kind it’s just a mess my life xx

[MyStar86 in reply to Purple_Badgers]

just to let you know I spoke to my gp and she said nefopam is a right light for gps so she can’t even prescribe it or fill prescriptions at my consultants request!!! Must be based on where in the country as she said there is no way she could prescribe it so I decided to give up as I can’t chase my private gastro for a prescription every time I need it. The gp has given me Duloxetine I’m just it very slowly only about a quarter of a capsule given how sensitive I am to serotonin but hopefully I can build up till I see a pain management specialist xx

[Purple_Badgers in reply to MyStar86]

😢 hey, so sorry you didn’t get anywhere with that. I bet it is an area/funding issue then. Terrible really, as treatment should be based on your needs, not your postcode! Hoping that things improve for you in the near future. Lots of love xxx