Flupirtine: Hi everyone, I have been on... - Fibromyalgia Acti...

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Flupirtine

sjm81 profile image
12 Replies

Hi everyone, I have been on this drug for just over a month now and I want to say this is the best I have felt in over a year. It isn't available in the UK and you have to pay privately to have it from Europe, but it is worth every penny. 

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sjm81 profile image
sjm81
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12 Replies
Sorebones profile image
Sorebones

If it helps it must be worth every penny. Must look into it 🐸

BlueMermaid3 profile image
BlueMermaid3

Hi there

I gather this is a medication for pain?  Do you mind me asking you how much you pay for it?

Thanks

Lu x

Volunteer Administrator 

peck profile image
peck

Is it prescription or over the counter?? Glad it helps . Peck.😊

Greenpeace profile image
Greenpeace

Hi,  I have just read up on this drug and it sounds rather impressive.  It is a non opioid analgesic and as said by sjm81 is available in EU countries but not in the UK.  It has been around for about 20 yrs.

What I found very interesting in the literature was that is was on the 2nd tier trails in US for Fibromyalgia and so far it is very promising.  If it's approved by US (FDA) it usually follows that it could become available in UK.

In the meantime it can be bought privately in EU countries.  That is a bit risky as like all medications there can be interactions with the other meds that you might be on, and your GP maybe not be too happy to monitor you while taking drugs from another source.

I suppose in the end it's entirely up to you as to what we take. Personally I would love to have better pain control, but I wouldn't risk taking something that is not yet approved in the UK because if things go wrong I wouldn't get much sympathy from the NHS if I was taking drugs not yet approved in UK.

GP. 😊😊

TheAuthor profile image
TheAuthor

Hi sjm81

I am genuinely delighted that this medication works well for you. However, it does come with a warning on it's prolonged use as it can cause serious liver damage. I have pasted you a link and excerpt from the European Medicines Agency below:

*Restrictions in the use of flupirtine-containing medicines - CMDh endorses PRAC recommendation

The Coordination Group for Mutual Recognition and Decentralised Procedures – Human (CMDh) has endorsed by majority new recommendations to restrict the use of oral flupirtine medicines and suppositories. These medicines should now only be used for treating acute (short-term) pain in adults who cannot use other painkillers, such as non-steroidal anti-inflammatory drugs (NSAIDs) and weak opioids, and treatment should not last longer than two weeks.

ema.europa.eu/ema/index.jsp...

I want to genuinely and sincerely wish you all the best of luck with this medication but I would urge you to discuss it's long term use with your GP.

All my hopes and dreams for you

Ken

sjm81 profile image
sjm81

In reply to everyones posts, I will have liver function tests every 4 weeks to make sure no damage is being done. I currently pay £135 a month which works out at £4.35 a day or 73p a tablet as the dose is 6 tabs a day. As these are prescribed by a private Fibro specialist the Pharmacy he works with will call each month after my liver test is clear to re-issue the medication and they are delivered special delivery.

TheAuthor profile image
TheAuthor in reply tosjm81

Reading about this medication there is something similar (but not as strong?) in the UK on prescription called ''Nefopam'' it may be worth discussing it with your GP? Good luck :)

ritzy123 profile image
ritzy123 in reply toTheAuthor

Hi, just a word about Nefopam, it has bad side effects so be careful when trying this tablet, I tried it for 2 weeks, well supposedly 2 weeks but had to stop after just one week as gave me a severely bad cough during the night, nearly making me sick , a very dry throat and a bad stomach I was feeling ten times worse But everyone has different reactions so please be careful. I am now back on trams doll which helps but still have neck, back pain ..

TheAuthor profile image
TheAuthor in reply toritzy123

Hi ritzy123

Thank you so much for that information it is genuinely appreciated. It is always beneficial to know what could happen with a drug. I am also so sincerely sorry that you suffered as a result of taking ''Nefopam'' and I sincerely hope that your ''Tramadol'' helps. Please take care of yourself.

All my hopes and dreams for you

Ken

 

JJ100 profile image
JJ100 in reply tosjm81

Hi there. I know this is an old post but I am really trying to figure out how to get this drug. A German friend of mine had given it to me previously under brand name Ketadalon and it was amazing but I haven't been able to source it in the UK. How did you get yours? Was it mail order or did you have to fly into Europe somewhere? Thanks!

jan1022 profile image
jan1022

what is the drug your on? my doctor hasn't found anything that helps me so far. I've been suffering with fibromyalgia for years.

TheAuthor profile image
TheAuthor

Hi again, FMA UK did a feature on this drug last year and it does sounds impressive. I have pasted the link below:

fmauk.org/articles/41-medic...

Take care

Ken

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