nefopam: hi everyone been given this... - Restless Legs Syn...

Restless Legs Syndrome

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nefopam

connie50 profile image
28 Replies

hi everyone been given this med in place of tramadol (tramadol gives me severe itching)so had to come of it,so I have been given nefopam instead, (on a drug holiday) has anyone ever been on this med & does it work,would love to hear from members who have taken it.

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connie50 profile image
connie50
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nightdancer profile image
nightdancer

You are on a drug holiday from what? The tramadol? If tramadol makes you that itchy, you should not be taking it anyway, signs of an allergy to pain meds is "itchiness". Not sure what you are saying here. You are going to take nefopam instead of tramadol, and what about the patches? Are you still using those? I need to look nefopam up, never heard of it, must be a "UK only" med.

connie50 profile image
connie50 in reply tonightdancer

I am still taking the patch(doesn't work on its own) I used to take 50mg tramadol about 10.0 clock along side 1 clarityn but I was waking up about 2.00 o'clock in the morning itching all over my body & I couldn't get back to sleep I was like a walking zombie the next day I was so tired, by the time the itching had stopped the RLS would kick in, so when I went to see my GP this morning & explained about the itching she told me I was allergic to opioid(not spelled that properly) so she took me of the tramadol (was also taking codeine not at the same time) & to try Nefopam (this is a none opioid drug) if I don't get on with it she said she will put me back on Tramadol I will try anything to get some sleep

hi Connie i'm on nefopam and it helps me like you i was on tramadol but interfered with some of my other medication and after 13 years they just decided that because i was on one of the medication i took could lead to a heart attack but nefopam are brill how many do you take per day look forward to your reply take care Alan

connie50 profile image
connie50 in reply to

hi bigalan yes the tramadol was making me itch really bad then put me on codeine (same family) this was the same by the time I was ready for bed I would be just lying itching all night so couldn't get no sleep (I was so tired) by the time I was falling asleep my legs would start so it was a waste of time going to bed.

in reply toconnie50

hi Connie i know what your going through even though i'm on nefopam i still have trouble with my legs because, i've three disc out also my sciatica nerves not only is it trapped but i damaged it at the same time so i know how you feel you its time for bed your soooooooooooooo tired but your legs and everywhere else that hurts starts to play up. its been nice talking to you hope you will keep in touch take care your new friend Alan x

connie50 profile image
connie50 in reply to

thanks Alan I am just trying these out for the first time today, I will take one tonight about 10ish to see how I get on the GP said I can take up to 3 a night if one is no good, I will keep in touch its not very often I come on this web site but you always meet new people

in reply toconnie50

hi Connie just to let you know i take two three times a day and have been doing now for at least two years now my memory not good but i've been o.k with them well its been nice meeting you take care just send a post when you want to speak with you again your new friend Alan x

nightdancer profile image
nightdancer

ok, I went and looked it up, the nefopam. It is a non narcotic med also used for pain, but one has to be very careful what other meds you are taking with it. If you have ever had a seizure problem or any heart issues, should think hard about this one. Also, if you are on any antidepressants, one has to watch out for Serotonin Syndrome. Too much Serotonin can be a bad thing. But, I have never heard of anyone taking it, not many studies in it at all, and from what I can see, it should not be mixed with too many other meds, can cause a lot of side effects. So, if I understand correctly, you are not taking the tramadol at all any more, and the nefopam is in place of it. The similarities I can see is that Tramadol is also a non narcotic pain med, so they may have the same kind of mechanisms and actions. Check it out by reading about it, did you get it yet? Or do you have to pick it up still? Itching is another common side effect for lots of pain meds. But, as far as how this works, I have no idea, never heard of anyone taking it, and it is not available in the US. So, you will have to do some reading, talk to your pharmacist, and read the leaflet that comes with it at the pharmacy, as well as on rxlist.com or drugs.com

connie50 profile image
connie50 in reply tonightdancer

I can only try it, if I get any bad reactions I will stop it, but I have got to get some sleep, not slept for a week (I am so very tired)what with the itching & my RLS I just didn't no which way to turn,

LynnTenn profile image
LynnTenn in reply toconnie50

Connie, have you ever spoken to your doctor about Klonopin( generic is Clonazepam).It works well for RLS and sleep.I'm a little worried about that Nefopam not being approved here. I realize that all medicines carry side effects, but how can anyone's insurance cover a medicine that hasn't even been established in the US.The article in the link I posted should be read by those taking it or thinking about taking it.

Spudellen profile image
Spudellen

I have been put on medication called Sifrol....has anyone heard of it and its side effects?? I am filling the prescription tomorrow so would like to know soon. I really trust this forum.

LynnTenn profile image
LynnTenn in reply toSpudellen

Spudellen, it's a medicine for seizures and parkinson disease.I'm not familiar with it, but go online and type in Sifrol forum and maybe you can get some feedback from someone who has taken it in the past or is on it now.

Everyone reacts differently to med. Is Sifrol, pramipexole or ropinerole, i always get it mixed up. Many of us have tried it, some are still taking it, and some have stopped mostly because of augmentation. What dose are you starting on..? It should be the lowest dose, the starting dose. The leaflet should give a full account of what side effects can happen. They dont happen to everyone. You need to keep the dose a low as possible, to try to avoid augmentation. Also alot have experienced the compulsions side effects. So, keep an eye on that too.

connie50 profile image
connie50 in reply to

hi elisse this is not a dopamine drug its supposed to be a pain killer (none opioid)I was taking 50mg of tramadol + 1 all day Claritin but I was itching all the time.this drug Nefopam 30mg does nothing for me my legs last night were the worst they have ever been I was up down up down (even though I had a patch on) all night long but as soon it was coming light (this is going to sound crazy)the RLS went away,I went down to Kims (she only lives down the rd. from me)for a bit of moral support. I am going to try & get a nap now because I am so very tired speak with you later

nightdancer profile image
nightdancer in reply toconnie50

If you are itching that much when you are taking the tramadol, you COULD be allergic to it. That is the first sign of an allergy to a medication, especially pain meds. Not surprised the nefopam did not work for you. it is sort of designed to stop addiction, like the naloxone in Targinact, so it does block the pain killing action in the drug. We do not have either of these in the US. They are only available in the UK for now.

connie50 profile image
connie50 in reply tonightdancer

I didn't know you can be allergic to tramadol,the GP never said anything to me about that, the only thing he did say was all opioid drugs have some sort of reaction its the morphine in them

Pallawalla profile image
Pallawalla in reply toconnie50

Hi Connie, from what I have read people with RLS sleep the best from around 7:00 am to 10:00 am! So you aren't crazy!! Also my Dr. told me to work my legs as fast as I can and for as long as I can right before bed. It helps!!! Good luck!

nightdancer profile image
nightdancer in reply to

Sifrol is pramipexole/Mirapex

Connie, my reply was to Spudellen.. lol Are you sure you are not having augmentation from the patch Connie. sounds like it to me...

connie50 profile image
connie50 in reply to

no I don't think so the patch is working fine, sorry about the reply to spud Ellen I must be tired

Spudellen profile image
Spudellen in reply toconnie50

Aren't we all? Tired I mean!!!!!!!!

If the patch is working what is the pain med for. ? Hope you got a nap. :)

connie50 profile image
connie50 in reply to

I have been on a drug holiday I have to come of dopamine every so often because the patch stops working then I go on to repinarole for a few weeks when this stops working I have a drug holiday (that's what DR B told me to do he has some patients were he as to do that because the dopamine stops working.yes I got a good nap thanks

LynnTenn profile image
LynnTenn

fda.gov/Drugs/ResourcesForY...

I read this on FDA website-Nefopam has not been approved for use in the United States.You need to check on that.

connie50 profile image
connie50 in reply toLynnTenn

I live in England, & I have not used it I tried, but after the first night my legs were all over the place,so not took it since

flower-girl profile image
flower-girl

Oh your poor soul, that's just too miserable! I have been put on Nefopam and find them totally ineffective :-( . I have found some relief from placing large frozen ice packs around my thighs...although it's uncomfortable with the cold....but somehow better than the pain ! My thoughts are with you .

connie50 profile image
connie50 in reply toflower-girl

hi I no longer take Nefopam it wasn't doing a thing for me at all I have gone back on the Neupro patch + clonazepam

FiHut profile image
FiHut

Such a shame you couldn't continue on the Nefopam because although it needs to be increased in quantity to 3 x 3 a day but slowly it does work - I think that part of the problem people have with it is that it doesn't give the same type of feeling as an opioid drug so no spaced out feeling.

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