Where to get Low dose Naltrexone? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Where to get Low dose Naltrexone?

Catgirl22 profile image
7 Replies

Hi I have M.E/Fibromyalgia and i am wanting to try LDN, after reading lots of information about it and it's effects on people with Fibromyalgia. My GP is not very supportive so I am looking to get this through a private doctor online and pharmacist. Can anyone recommend where they get theirs from and costs? I have had a look on the LDN website which lists a couple of places, but it seems quite expensive as it seems you have to pay £30 everytime you want a new prescription, so that would be every month and then the cost of the medicine on top of that. I understand you can't list places on here so if anyone wants to send me a PM that would be great. Thankyou

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Catgirl22
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7 Replies
clare_hart profile image
clare_hart

I don't understand why your GP would even hesitate to have you try something that may or may not work, but not do harm. Especially if you want to do it. Certainly doctors have had plenty of patients who are noncompliant with their meds and since you are obviously committed to give it a chance then why not prescribe it? Grrr, ya gotta wonda. :-(

TheAuthor profile image
TheAuthor

LDN is the treatment (of last resort) for many MS sufferers and it is not to be taken lightly as there are many, many side effects and pitfalls with such a powerful drug. I have listed you some of the side effects below (from Drugs.Com website) and I genuinely hope that you think long and hard before trying this medication and take into account your GP's advice:

Side Effects:

Less common

Skin rash

Rare

Abdominal or stomach pain (severe)

blurred vision, aching, burning, or swollen eyes

chest pain

confusion

discomfort while urinating or frequent urination

fever

hallucinations or seeing, hearing, or feeling things that are not there

itching

mental depression or other mood or mental changes

ringing or buzzing in the ears

shortness of breath

swelling of the face, feet, or lower legs

weight gain

Some naltrexone side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:

More common

Abdominal or stomach cramping or pain (mild or moderate)

anxiety, nervousness, restlessness or trouble sleeping

headache

joint or muscle pain

nausea or vomiting

unusual tiredness

More common

Chills

constipation

cough, hoarseness, runny or stuffy nose, sinus problems, sneezing, or sore throat

diarrhea

dizziness

fast or pounding heartbeat

increased thirst

irritability

loss of appetite

sexual problems in males

I want to sincerely wish you all the best of luck

Ken

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

I have been on ldn for 3 years, so I am happy for anyone looking for more information to pm me.

oscar678 profile image
oscar678 in reply toHazel_Angelstar

Could I ask about LDN? I would like to try it and have read most of the major studies, Stanford etc, I asked the dr at my pain management clinic what he view was and dismissed it out of hand, did your g prescribe it, are their any UK studies? M x

Redhots7 profile image
Redhots7

What is LDN ? I am not comfortable ordering mess online. You have no way of knowing what you are really getting . Find a doc that is supportive, Fibro is something you will fight forever and you need doc that will work with you .

Catgirl22 profile image
Catgirl22

Oscar, I now order my Ldn from a recommended chemist online. You have to have a consultation with their GP on the phone first and then you can get a prescription for up to 3 months at a time. It took me quite a long time to get used to it, as I did have quite a few side effects to begin with and had to up my dose very slowly, as it flared up my M.E symptoms. I am still adjusting the dose, to find the right one for me. I have found it helps with my sleep and sleep much deeper now, but I still have a lot of pain, so I am considering taking something else as well.

arison profile image
arison

The side effects listed here are for Naltrexone, not low dose Naltrexone. There are no side effects with Naltrexone, only a shift in immunity which may cause a flu like feeling. It's quite irresponsible to warn people about side effects for the wrong drug. This has helped so many people I hope you look into it more deeply and review your comment.

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