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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.

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Re: Are you taking LDN?

Postby TATT » Mon Jul 16, 2012 6:59 pm

http://www.ldnnow.co.uk/

Check this link as we need to help with getting this drug more available. See if we can sign the petition
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Re: Are you taking LDN?

Postby Em c » Mon Jul 16, 2012 7:02 pm

Me too - don't know what I'd do without it...

I've learnt so much!

:-D

Em x x x
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Re: Are you taking LDN?

Postby Em c » Mon Jul 16, 2012 7:33 pm

I've just found some more testimonials from people by searching LDN and fibromyalgia on U-tube.

Interesting to hear real people with fibro talking.

Em x x x
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Re: Are you taking LDN?

Postby FluppyPuffy » Mon Jul 16, 2012 9:51 pm

LDN is something that pops up on here occasionally, and each time there are numerous comments about what a difference it can make. The drawback to it tho is that many docs are reluctant to prescribe it, even off label. There are some who are prepared to do it, but it tends to be done on a private prescription, which of course then has to be paid for :facepalm: :facepalm: :facepalm:

I'm not wanting to come across as pessimistic about it, just want to make you aware of what has happened to others who have tried to have it prescribed. Not being able to have it prescribed has made some look for and buy it online, which as we all know is not always a safe thing to do.


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Re: Are you taking LDN?

Postby denys » Mon Jul 16, 2012 11:21 pm

I also worry that if it really was as effective as is claimed surely the NHS would be desperate to prescribe it to get us all off their backs, the fact that they arent causes me to think there is possibly something else going on with it :yikes: :yikes: :yikes: :yikes: :yikes:
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Re: Are you taking LDN?

Postby MonkeyFeatures » Wed Jul 18, 2012 11:32 am

I have tried it, it upset my tummy and made my painkiller ineffective so I had to stop. However, it did make me feel much more alert and I had a lot more energy, I would like to give it a go again once i've amended my pain meds :-) its worth a try! x

p.s. I paid privately and it cost me £45 with the consultation and prescoription. After the first month though it costs £30 for 3 months worth which I think is quite reasonable if it works x


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Re: Are you taking LDN?

Postby TATT » Wed Jul 18, 2012 12:28 pm

Hi Monkey features,

I read somewhere that LDN is good for endometriosis as well. Be great if you saw an improvement in both. X
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Re: Are you taking LDN?

Postby Elspeth » Sat Jul 21, 2012 12:07 am

From what I've read so far it sounds brilliant. The only thing is- am I right in saying that you can't take tramadol and codeine with it? As in, all opiates have to be completely out of your system? Because that would obviously be a big problem...
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Re: Are you taking LDN?

Postby TATT » Sat Jul 21, 2012 6:30 pm

Hi Elspeth,

Yes your right but, a lady I am following her journey on LDN is still taking 2 tramadol of a night apparently they are not that strong an opioid and as long as you leave six hours in between doses.

I am only quoting what I have heard though x
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Re: Are you taking LDN?

Postby Elspeth » Tue Jul 24, 2012 8:33 pm

Thanks TATT, yes I've done some more research on it and I am seeing my GP on friday to try and persuade him to prescribe it. Even if I have to pay it's not took expensive. Duloxetine has looong since working for me.

Apparently you can take tramadol but have to leave it 6 hours apart from LDN.

I've read it can take up to 6 months to feel the effects on people who have had ME/FM for decades, maybe hopefully it will work faster on me...

Worth a try, nice to have some hope for once. :idea:
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Re: Are you taking LDN?

Postby Em c » Tue Jul 31, 2012 8:53 pm

Hi Everyone,

The GP didn't want to know! I handed her all the information for GPs from the LDN research trust and she handed it back saying she hadn't heard of it, wouldn't prescribe it and I would need to discuss it with my rheumy, who I'm not due to see again until April 2013.

I visited the Dove private clinic in Hampshire and they've been brilliant. He's testing my magnesium level and some other things my GP refused to test because they wouldn't offer me treatment for it on the NHS. He spent 1 and a half hours going through my medical history file with me and asking questions + listening to the answers. He's prescribed me some food supplements to try and balance my immune system. I've already had people commenting how well I look, my malar rash has faded considerably and I feel much more myself. My eyes are sparkling again and I was looking so tired and old.

I asked him about LDN and he said he could prescribe it for £25. I've decided I'm going to see how I get on with the supplements and try to get off the meds I'm currently on, then depending on how well I feel, consider beginning the LDN which will have far fewer long term side effects than my other meds.

Thanks for all your info and comments, I'll let you know how I get on if I go for it!

:-D

Em x x x
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Re: Are you taking LDN?

Postby denys » Tue Jul 31, 2012 10:45 pm

:fingerscrossed: Em will be really interested in how you get along on it :-D :-D :-D
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Re: Are you taking LDN?

Postby TATT » Thu Aug 02, 2012 1:32 pm

They say very little bit helps. So I went on www.ldnnow.co.uk and there is a place to write to your local MP to help get this drug on the NHS imsread of just private prescription.
It took me 5 minutes to email my MP they find it all for you and I have a reply in the post today stating that she is writing to the minister at the department of health on my behalf.

It's really easy to do and the more we make a fuss the sooner we will be able to try this drug for ourselves. :-)
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Re: Are you taking LDN?

Postby shazq » Thu Aug 02, 2012 3:52 pm

Keep us updated TATT
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Re: Are you taking LDN?

Postby Em c » Tue Aug 07, 2012 7:01 pm

Thank you Tatt!

I've done it! :-D

My MP is actually David Cameron so it will be very interesting to read his response... I'll let you know.

I'm going to paste your link onto 2 fibro forums I'm a member of too, hope that's OK, the more the merrier I think!!!

Em x x x
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