No from NHS GP for LDN for ME/CFS

What a lot of letters. But it is (as expected) a no from my NHS GP for prescribing LDN for ME/CFS.

She was apologetic, bless her.  But her hands are tied.

One good thing came from it though (which I need to back up with some bits of paper) and that was to let her know that the official person in their practice was mistaken in saying that you can’t get low dose Naltrexone in the UK without importing it and spending a lot of money.  Because I’m assured you can get low dose LDN for a decent price if you know where to ask.

If you try to get it from a local chemist in the UK it may end up costing a fortune (like £350?! No joke!).

But there is a pharmacy in Glasgow who will provide it mail order for £15 a month for liquid or £27 for tablets (at time of writing).

I found the info for them out on this forum post and here is the actual pharmacy site

You do of course need a prescription from a doctor for it first!

But I can let my GP and her official people know about this because if anyone goes to my practice with MS and asks for LDN they stand a much better chance of getting access to it.

Meanwhile I will now have to decide whether to pursue a private prescription for LDN.  Which might involve having to travel for a consultation and certainly having to pay.  But not crazy money and all quite possible.

My best option seems to be to go through this e-med service detailed on the LDN Research Trust’s forum

The money and possible travel for consultation is one thing for me to get past but I think it’s also the idea of being scrutinised for a diagnosis that makes me wary.

But what is fab is not only do I have my Lovely GP’s blessing to go and get a private prescription but she’s very keen to find out from me if it does indeed help.

I’ll leave any decision making to another day.  But I expect I’ll be back on the internet within the hour assessing my options 😉


13 Responses to “No from NHS GP for LDN for ME/CFS”

  1. 1 ashysheela November 10, 2009 at 8:58 pm

    oh that’s interesting info about where to get it once the prescription is obtained. I am glad your doc is open to it even if her hands are tied.

    On an unrelated note – I was reading about Aquagenic Pruritis today (reckon i have it tho’ any doc i have discussed it with in past has not heard of it) and someone on a mesage board said LDN had helped them to shower again (what a dream that would be!). I am wondering if i should bring the info to the docs attention when i go on friday so that may be useful to me also eventually, thanks! Not sure if i could take it with existing meds but worth asking if the time came (and it may help with more than one thing)!

    Good luck if you pursue this further.

    • 2 rachelcreative November 10, 2009 at 10:33 pm

      Oooh I learnt about a new condition. Which I think someone in my family might have. Huh. Interesting.

      If there’s research and clinical evidence that it helps you might be successful.

      The conclusion from the official bod was that there was a lot of theory but not much evidence to back prescribing for CFS.

      A quick look suggests contraindications for opioids (like co-codomal) and thyroid hormone replacement therapy. And past organ replacement. Also those at risk of liver disease.

      Although I suppose if not many docs have heard of the condition then getting a prescription of a drug that not many docs know about its uses in low doses might be kind of tricky!

      • 3 ashysheela November 11, 2009 at 10:42 am

        yes i think it would be tricky… i am going to gather any info about the condition i can find today and then baffle them so that they give me dermatologist referral – where i might (who knows) have slightly more chance of some help. thanks for the links, you are ace at handy links 🙂

  2. 5 Sue November 10, 2009 at 10:55 pm

    So sorry to hear you weren’t able to get LDN from your GP. Hard to say whether the extra trouble and money would be worth it. LDN has helped me, but I know others with CFS who couldn’t tolerate it at all.

    Funny about the cost. Here in the US it’s extremely cheap because naltrexone has been generic for so long. Of course, you have to have it compounded to get the low-dose, but most compounding pharmacies charge between $15-$30 per month. I pay $20 and that includes shipping.

    Good luck, whatever you decide!


    • 6 rachelcreative November 11, 2009 at 9:15 am

      Yes one of the great things about LDN is that it’s cheap to produce so goodness knows how pharmacies in the UK can sometimes be charged so much. I guess because they are importing it from the US.

      The downside of it being a cheap drug is no big drug company wants to spend money on clinical trials to see if they can market it, I mean see if it’s helpful to different conditions.

      I am concious that LDN might help a little, help a lot, do nothing for me or even make me feel terrible. Which is part of the reason why I’m reluctant to do anything possible to get hold of a prescription.

      But if I can get hold of it with relative ease and minimum expense it seems worth a try because I might be one of the people it helps.

  3. 7 poeksie101 November 11, 2009 at 8:46 am

    Rachel, thanks for the links! I meet with my specialist in a month, and now have even more info for him about LDN and sourcing it in the UK! You’re a star!

  4. 9 Jozephine November 11, 2009 at 9:05 am

    This is where I am envious of the US health system. In the UK we have a bog standard treatment for CFS (or any disease for that matter). Guidelines for treatment are determined by received medical wisdom, but also by cost. Which is correct when it is publicly funded.

    So, anything a bit out of the norm and we have to jump through hoops.

    You seem to be a very determined hoop jumper! Showing the way for the rest of us, thanks.

    • 10 rachelcreative November 11, 2009 at 9:18 am

      Well as I just said in reply to another comment I’m willing to jump a few hoops but not an endless line of them!

      I wish there were more clinical evidence for ME/CFS and LDN. Then everyone (including me) could make an informed decision instead of trying to try it. Because it may not be of any use to me even if I do manage to get hold of it. But I’d like to try.

  5. 11 Rachel M November 13, 2009 at 1:11 am

    I’m very sorry to hear that your lovely doctor cannot prescribe LDN for you. 😦 I’m impressed by your positive attitude.

    Just a thought on technicality. Would it be more chance to get prescription of LDN for pain management(eg fibromyalgia) than for ME/CFS? There was clinical trial done for fibromyalgia and the result was positive, but not for ME/CFS. (I know you don’t have fibromyalgia diagnosis (yet)…)

    I agree that you never know if it works for you or not until you give it a try.

    Good luck.

    • 12 rachelcreative November 13, 2009 at 9:11 pm

      An interesting idea. I think I would need to have a FMS diagnosis to swing that and even then they might be reluctant. I think MS they would consider it for but not much else.

      Nothing ventured, nothing gained. As my mum would say.

  6. 13 StephenM March 7, 2010 at 1:56 pm

    Hey I stay in Edinburgh and have a private /me/CFS consultant in Bolton. he runs THE FATIGUE CLINIC his name is Dr Andrew Wright.
    he recommended LDN. all my consultations with him have been over the phone. he can write a private prescription and it can be dispensed from a pharmacy in Glasgow. i stay in Edinburgh. i think its £50 for 3 months supply. ive definitely improved with it.
    good luck.

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