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Seaweed

LDN Question

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Seaweed

My partner has been given an NHS prescription for liquid LDN. If anyone else takes it, which pharmacies in England make up the liquid form?

Thank you in advance!

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Sluggish
Marina

Hi Seaweed and welcome!

 

Many of us use LDN, myself included. The only chemist is Dicksons, as they specialise in LDN and make it themselves: http://dicksonchemist.co.uk/

 

You might prefer to contact them first about how to go about it, as well as about starting dosage and dosage in general, as I believe the script from the GP has to be filled in in a special way: http://dicksonchemist.co.uk/new/contact-us/

 

Once your partner gets it, I hope it helps!

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Marina

(belated DX in June '05, SPMS)

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Seaweed

Hi Marina,

 

Thank you for your quick reply!

 

I should have included the full story. We took a factsheet downloaded from the LDN research council's website to the GP. It gave the instructions for how the script should be written there, and said the best pharmacy to send it to was Dicksons. So we did that, but had a call from them the next day, saying they can no longer supply English patients with the liquid form, only the capsules. If we wanted the liquid they could only do it on a private script.

 

Having googled it, it's apparently something to do with the NHS trust they are in not being refunded the cost by the NHS in England!

 

So in theory, any pharmacy should be able to make up the liquid, following the instructions on the script. But we posted to Dickson's as they were supposed to be the experts. I'll try posting on the LDN research councils Facebook group.

 

Thanks again for your help, as you take it yourself, I guess you find it works - which is great!

 

Jon

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Sluggish
Marina

I didn't know that about the liquid, as I have the capsules. I also get it via private prescription, as it can be quite difficult to get any NHS GP to prescribe it - if you managed it, that's great!

 

Dickson's do a private prescription service, as they took over from E-Med who used to do them. At least, they do mine for me, but that may be as a carry-over from E-Med. The script itself is about £5 a month, and the liquid is around £25 a month (I don't know the prices anymore for the liquid, it's cheaper than the capsules that are around £30). Dickson's are also excellent at posting it to you every month.

 

To be honest, I'm not so up-to-date with LDN these days, as I've been on it for over 10 years now.

 

If you find out from the LDN Research Trust what other chemists in the UK can make it up properly, please let us know? You might also want to try asking the LDN Research Trust directly? https://www.ldnresearchtrust.org/contact_us


Marina

(belated DX in June '05, SPMS)

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Procrastinating
Stumbler

Hi,

 

The monthly cost of liquid LDN at Dickson's is £20. The initial Private Consultation is £35. I've yet to find out the cost of a renewal 3 month script.

 

As you can tell, I've only just started on it. Having started at 1.5ml (1.5mg), as per the instructions, I'm now up to 3ml (3mg) per day. The jury's still out for meon whether I'm getting any benefit. I'll probably only find out, if and when I start tapering off again. But, I have had MS for the best part of 35 years!

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Seaweed

Thank you John, I hope that you have success on it! Not sure if you've heard of the Overcoming MS thing? My partner follows it and thinks it's done her good. It's an evidence based approach started by an Australian professor who got MS. Plenty of info available if googling it. Good luck!

 

Marina, thank you. Yes, I'll come back to update you with what I find out

 

Best wishes, Jon

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