[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/bbcode.php on line 488: preg_replace(): The /e modifier is no longer supported, use preg_replace_callback instead
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4780: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3898)
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4782: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3898)
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4783: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3898)
[phpBB Debug] PHP Warning: in file [ROOT]/includes/functions.php on line 4784: Cannot modify header information - headers already sent by (output started at [ROOT]/includes/functions.php:3898)
The UKFibromyalgia Forums • View topic - Are you taking LDN?



Are you taking LDN?

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

Are you taking LDN?

Postby Em c » Sun Jul 15, 2012 12:12 pm

Hi,
I've been finding out all about LDN and it sounds like a really positive med which treats the fibro, not just the symptoms.

It seems it hasn't been licensed for use on the NHS because nobody will fund the trials as it is a cheap, generic drug and no pharmaceutical company stands to make any real profit from it.

The small trials done on fibro patients have been very positive and it is proven safe as it has been licensed at much higher doses for recovering drug addicts.

Even the way it works seems to make sense to me!

I'm keen to try it but would like to hear some other people's first hand experiences if poss.

:-D

Look forward to hearing from anybody!

Em x x x
Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby denys » Sun Jul 15, 2012 12:15 pm

Sorry no havent tried it :-D
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Are you taking LDN?

Postby chrisgoneferal » Sun Jul 15, 2012 12:18 pm

Can you say more about it please so I can look it up and maybe try it....................have to say nothing has worked for me so far just pacing myself and resting between jobs...................

Good Luck with it

Chris
chrisgoneferal
UKFM Member
 
Posts: 94
Joined: Sun Dec 11, 2011 12:37 pm

Re: Are you taking LDN?

Postby Em c » Sun Jul 15, 2012 12:30 pm

Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby Em c » Sun Jul 15, 2012 5:01 pm

I'm wondering / hoping that anyone who has taken it is feeling so much better they no longer spend time looking on the fibro sites...
:-D

Em x x x
Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby TATT » Sun Jul 15, 2012 11:02 pm

Hi Em,

Don't quote me but I am waiting to go to pain clinic where my doctor says they might prescribe it. It has had good results for fm and me/cfs which I have both.

There is another woman trialling it out now on another fm forum. ( not sure if I should say which one don't know the rules). Anyway I am reading up on how she is doing and there is a link somewhere I will try find it tommorrow that you print out especially to give to your GP. It is official document that tells them what it is and how to prescribe.

Apparently so far it has hardly no side effects and does not stimulate the appetite. Increases energy and helps pain. I am hoping to start in September.

Goodluck x
TATT
UKFM Member
 
Posts: 413
Joined: Mon Jan 16, 2012 12:21 pm

Re: Are you taking LDN?

Postby crochetkid » Mon Jul 16, 2012 11:59 am

As a non-practising pharmacist with FM I would be very interested to know how you get on with LDN. It has some pretty nasty side effects at the normal dose used for addiction but hopefully they will be minimal at low-dose:

"nausea, vomiting, abdominal pain, diarrhoea, constipation, reduced appetite, increased thirst; chest pain; anxiety, sleep disorders, headache, reduced energy, increased energy, irritability, emotional lability, dizziness; chills; urinary retention; delayed ejaculation, decreased potency; arthralgia, myalgia; increased lacrimation; rash, and increased sweating; rarely hepatic dysfunction, suicidal ideation, and speech disorders; very rarely hallucinations, tremor, and idiopathic thrombocytopenia" - BNF62

In fact a lot of those side effects sound like my FM! LDN may also stop, or at least reduce the effectiveness of any opiate-based painkillers you're taking from working, but if the LDN works you won't need them I suppose!

I am usually sceptical about these treatments that claim they are a miracle cure, and in this case there really weren't enough subjects in the study to make it valid research and also the pharmacology doesn't really stack up but I will keep an open mind. Please keep us posted!

P.S. I am also trying to find a PhD post for research into FM treatments, though the difficulty is funding. If anyone knows of any contacts that might be able to help, please get in touch!
User avatar
crochetkid
UKFM Member
 
Posts: 23
Joined: Thu May 03, 2012 9:59 pm
Location: Leeds, UK

Re: Are you taking LDN?

Postby Em c » Mon Jul 16, 2012 2:05 pm

Thank you,

I'll let you know how I get on!

I believe there are very few, if any, side effects on LDN. Also many of the meds we are routinely prescribed have warnings of hideous side effects so I guess this would be no different...

I think the lack of evidence is because the pharmaceutical companies don't stand to make any real profit so large studies haven't been able to get funding. It seems ridiculous that basically what could treat the fibro, not just the symptoms (and many other illnesses) is too cheap for anyone to bother looking into!

The success seems to be about getting the dose right for individuals but you need to get it prescribed and made up correctly in order for this to happen.

I'd love to look at the link you mentioned.

:-D

Em x x x
Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby TATT » Mon Jul 16, 2012 3:35 pm

http://www.ldnresearchtrustfiles.co.uk/docs/LDN

I don't know how to post in links but I managed to copy it.

Let me know if you can find it otherwise I will get help to post it here properly x
TATT
UKFM Member
 
Posts: 413
Joined: Mon Jan 16, 2012 12:21 pm

Re: Are you taking LDN?

Postby TATT » Mon Jul 16, 2012 3:36 pm

TATT
UKFM Member
 
Posts: 413
Joined: Mon Jan 16, 2012 12:21 pm

Re: Are you taking LDN?

Postby Em c » Mon Jul 16, 2012 4:10 pm

Excellent, Thank you!

I googled the website from the link and listened to an interview. Also downloaded the GP pack to take with me next week... fingers crossed!

Are you on it Tatt?

Em x x x
Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby Em c » Mon Jul 16, 2012 4:12 pm

No you're not! Lol!

Sorry fibro fog, forgot what we wrote before so had to look back...

Good luck at the pain clinic.

:-D

Em x x x
Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby crochetkid » Mon Jul 16, 2012 4:21 pm

That's good about it having very few side effects at that dose...the last thing we need is more symptoms!

I've had a hunt around to see if any more studies have been done since the 2009 one and found a study of 28 subjects.



Yes they have to be made as "specials" as the dose is a lot lower than the existing tablet strength. Also naltrexone isn't licensed for this indication so this is maybe why GPs are reluctant to prescribe it, but specialists could. I've been referred to a CFS clinic so I might ask them if it's possible to try it.

:-)
User avatar
crochetkid
UKFM Member
 
Posts: 23
Joined: Thu May 03, 2012 9:59 pm
Location: Leeds, UK

Re: Are you taking LDN?

Postby Em c » Mon Jul 16, 2012 5:23 pm

On the link from Tatt above it gives you info to give to your GP so that they could prescribe if they are happy to.

Good luck at the clinic, it's worth an ask!

:-D

Em x x x
Em c
UKFM Member
 
Posts: 80
Joined: Mon Apr 30, 2012 6:33 pm

Re: Are you taking LDN?

Postby TATT » Mon Jul 16, 2012 6:51 pm

I love this forum and the people in it :-D
TATT
UKFM Member
 
Posts: 413
Joined: Mon Jan 16, 2012 12:21 pm

Next

Return to Treatments & Medication

Who is online

Users browsing this forum: No registered users and 3 guests

cron