The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Naltrexone in the UK

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by wiltedflower77, Aug 25, 2017.

  1. wiltedflower77

    wiltedflower77

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    Hi does anyone in the UK take low dose naltrexone or know how to get it prescribed for CFS? Thankyou
     
  2. Cheesus

    Cheesus Senior Member

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    Clinic158 in Glasgow will prescribe it over the telephone.
     
  3. wiltedflower77

    wiltedflower77

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    Thanks @Cheesus have you tried it then?
     
  4. anniekim

    anniekim Senior Member

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    http://www.prescribe4me.co.uk/LowDoseNaltrexone/Default.aspx


    "How do I get a prescription for LDN?
    Click on the button.

    Because LDN is an unlicensed drug and is not generally available in the community, an online-only consultation is not enough.

    Once you click on the START consultation, there is a brief questionnaire to be filled in, and then one of our doctors specifically trained in LDN use will call you back.

    This telephone consultation service costs £30 and includes the first 28 days prescription for LDN. You will only be charged if the doctor decides that you are suitable for LDN treatment. Repeat prescriptions are then issued every 3 months, at a cost of £14.50 (This price does not include the LDN medication). LDN can take up to 6 months at maximum dose to reach full benefit.

    Please note, we may request other information from you - such as a confirmation of diagnosis from your GP, or a letter of comfort from your own GP - allowing us to prescribe this medication for you. You will not be charged if we decide we cannot prescribe LDN for you in your circumstances."

    Took for a year, sadly no benefit.
     
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  5. Cheesus

    Cheesus Senior Member

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    Yes I get quite a lot of benefit from LDN. It has really helped to reduce my neurological sensitivity and fatigue.

    I initially went through the website suggested by @anniekim above, which ultimately led me to Clinic158.
     
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  6. wiltedflower77

    wiltedflower77

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    Thank you @anniekim for all the info. Sorry to hear you didn't get any luck with it. I am not sure whether to try it yet just feeling a bit desperate for anything right now. I don't have fibro just cfs so have not read much anecdotal reports for naltrexone treatment for cfs only, they've mainly been people with fibro and cfs.
    Thanks for your reply @Cheesus..glad you have found benefit from it.
     
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  7. Hip

    Hip Senior Member

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    Dr Chia finds LDN helps only a small percentage of ME/CFS patients, but for those it helps, it does so very significantly. Ref: 1

    It is possible that vitamin D3 may be essential for LDN to work properly, so it may be good idea to take vitamin D3 5,000 to 10,000 IU with LDN — see here.
     
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  8. wiltedflower77

    wiltedflower77

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    Thanks @Hip. I suffer with low dopamine type depression too and I've read it's used for that too. I don't tend to tolerate much lately though because of thiol/ sensitivity so it would be my luck that it would just make me more toxic like anti depressants do to me. Will make sure I take vit d if I try it. Thank you
     
  9. charles shepherd

    charles shepherd Senior Member

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    Basic information on Low Dose Naltrexone from the MEA:

    Bottom line is that Naltrexone:

    1 …….is an unproven and highly speculative form of drug treatment for ME/CFS and for all the other conditions like MS - where it is sometimes being used in the private medical sector

    2 …...is unlikely to be prescribed by an NHS doctor for ME/CFS

    3 ……..could cause adverse effects, some of which are similar to, or the same as, ME/CFS symptoms - see below

    We receive very mixed reports about LDN regarding both efficacy and safety. So in our current state of knowledge this is not a drug that we recommend or endorse

    I would however point out that there has been one small clinical trial involving the use of naltrexone in fibromylagia, a condition that has some overlapping features with ME/CFS

    Abstract, as published on MEA website:

    From Arthritis and Rheumatism, 28 January 2013.

    Low-dose naltrexone for the treatment of fibromyalgia: Findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels†

    Jarred Younger*, Noorulain Noor, Rebecca McCue, Sean Mackey
    Department of Anesthesia, Stanford University School of Medicine, 780 Welch Road, Suite 207F, Palo Alto, CA 94304-1573

    Abstract

    OBJECTIVE

    To determine whether low dosages (4.5 mg/day) of naltrexone reduce fibromyalgia severity as compared with the nonspecific effects of placebo. In this replication and extension study of a previous clinical trial, we tested the impact of low-dose naltrexone on daily
    self-reported pain. Secondary outcomes included general satisfaction with life, positive mood, sleep quality, and fatigue.

    METHODS

    Thirty-one women with fibromyalgia participated in the randomized, double-blind, placebo-controlled, counterbalanced, crossover study. During the active drug phase, participants received 4.5 mg of oral naltrexone daily. An intensive longitudinal design was used to measure daily levels of pain.

    RESULTS

    When contrasting the condition end points, we observed a significantly greater reduction of baseline pain in those taking low-dose naltrexone than in those taking placebo (28.8% reduction versus 18.0% reduction; P = 0.016). Low-dose naltrexone was also associated with improved general satisfaction with life (P = 0.045) and with improved mood (P =
    0.039), but not improved fatigue or sleep.

    Thirty-two percent of participants met the criteria for response (defined as a significant reduction in pain plus a significant reduction in either fatigue or sleep problems) during low-dose naltrexone therapy, as contrasted with an 11% response rate during placebo therapy (P = 0.05). Low-dose naltrexone was rated equally tolerable as placebo, and no serious side effects were reported.

    CONCLUSION

    The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe, and well-tolerated. Parallel-group randomized controlled trials are needed to fully determine the efficacy of the medication.


    POTENTIAL SIDE-EFFECTS OF NALTREXONE:

    Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

    Check with your doctor immediately if any of the following side effects occur:

    Less common
    1. Skin rash
    Rare
    1. Abdominal or stomach pain (severe)
    2. blurred vision, aching, burning, or swollen eyes
    3. chest pain
    4. confusion
    5. discomfort while urinating or frequent urination
    6. fever
    7. hallucinations or seeing, hearing, or feeling things that are not there
    8. itching
    9. mental depression or other mood or mental changes
    10. ringing or buzzing in the ears
    11. shortness of breath
    12. swelling of the face, feet, or lower legs
    13. weight gain
    Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

    More common
    1. Abdominal or stomach cramping or pain (mild or moderate)
    2. anxiety, nervousness, restlessness or trouble sleeping
    3. headache
    4. joint or muscle pain
    5. nausea or vomiting
    6. unusual tiredness
    Less common
    1. Chills
    2. constipation
    3. cough, hoarseness, runny or stuffy nose, sinus problems, sneezing, or sore throat
    4. diarrhea
    5. dizziness
    6. fast or pounding heartbeat
    7. increased thirst
    8. irritability
    9. loss of appetite
    10. sexual problems in males
    Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.


    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
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  10. Hip

    Hip Senior Member

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    @wiltedflower77, in case you cannot get a prescription, naltrexone can be obtained at the reliable online pharmacies detailed in this post.


    You might be interested in this list of drugs and supplements which are dopaminergic.
     
  11. wiltedflower77

    wiltedflower77

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    Thanks @charles shepherd I know no drug is risk free. It's the last thing I wanted to do try medication for cfs but after 7 years of Dr's naturopaths, nutritionists, homeopath,etc and not feeling any improvement I am feeling like anything is worth a try right now. It's good they've done one trial on LDN. Thanks for the info. Much appreciated.
     
  12. wiltedflower77

    wiltedflower77

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    Thank you @Hip for the dopamine list. Thanks for a lot of your posts that I've read too. Very informative and relate to them all. ☺
     

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