Anyone used low dose natroxen?

[HilaryWB]

Since I can't take strong painkillers like opiates , ( serious allergies)and my RA pain can be truly awful, someone suggested I try low dose natroxen, but I believe it is "off list" here in the UK, although licensed in the USA . Apparently GPs can supply on a private prescription here in the UK- just wondering if anyone has tried this?

[Crusee]

Hi

Do you mean naproxen?

If so,then yes you can have a prescription in the UK.It is an anti inflammatory drug.

My husband has a presciption each month for a problem he has with a shoulder and it is on repeat prescription.

Sorry if it is natroxen you refer to then I have no experience of this drug,not even heard of it.

Worth asking your gp about.

Crusee

XX

[helixhelix]

I think you mean naltrexone which is an opiod receptor blocker. If you put naltrexone in the search box on top right of your screen you'll see previous posts on this.

[Simba1992]

LDN (low dose naltrexone) has helped many with RA. You can get all the help you need from LDN Trust. ldnresearch.org. I have been on LDN for 4 months and have no pain. Worth a try👍🏻

[HilaryWB in reply to Simba1992]

Are you in th UK? If so how did you go about getting LDN? Did you need GP support,did your rheumatologist have to agree?

[Simba1992 in reply to HilaryWB]

The LDN Trust ldnresearch.org gives you all the support you need and the information about the med. I live in France and get my LDN sent to me. Clinic 158 has doctors that prescribe and have connection to a compounding Pharmacy that supplies you with LDN. You do not need the ok from your rheumy or GP but it's good to make them aware and have their support even though they are not prescribing it. There is an information sheet for doctors that you can print out to your GP or Rheumy. Many doctors in UK are fammiliar and prescribe it for their patients. LDN Trust can supply you with a list of doctors. LDN does not interfere with RA meds other than opiods that should not be taken with LDN.

[woodstar1]

Hi, I've not tried LDN but have read loads about it and would definitely consider using it if my current meds didn't work. You can indeed get a private prescription for it from a chemist in Glasgow i believe, obviously there is a cost for this, if you do a Google search on it you can find more about it. Also give LDN Trust UK a look at they are full of advice about it as well.

[Simba1992]

Glad you replied with all the important info😊👍🏻!

Thank you Kai__

[wishbone]

Due to complications caused by other health conditions, the number of RD meds I can take is very limited...think I was down to about 4 on the last count. I've never heard of LDN until now. Think I'll mention it to my rheumy when I next see her.

[Simba1992 in reply to wishbone]

Good idea to print out the info for doctors from the LDN site before your visit to your doc. Not all docs know enough about LDN. The good thing is that it can be taken alongside RA meds. Good luck👍🏻

[Simba1992]

The LDN Trust has a list of UK doctors who prescribe and support LDN therapy. The use of LDN a very low dose of Naltrexone that has been used in treating patients for a very long time and has been tested for its safety. There is already quite a number of studies and new scientific research on LDN use in AI diseases. Results are seen in Chrons and MS. More info on ldnscience.org.

[earthwitch]

Yes, I take low dose naltrexone, for ankylosing spondylitis. Like you, I can't take opiates or NSAIDs any more, and I'm not eligible for anti-tnf treatment, so its about my only option now. My GP prescribes it - I initially discussed my very limited options, provided a factsheet from the lowdosenaltrexone.org website and asked about LDN. They were happy enough for me to try it, as it has a very low side effect profile, is relatively cheap, and was already being used by a number of their MS patients. Not all GPs will do this, but I think where your options are extremly limited, then they may be more amenable to prescribing. You need to start low (1.5 mg at night, then slowly increase to a maximum of 4.5 mg, or lower if you feel benefit). I found I needed to do a lot of my own research about it first (when and how to take), but the website was really helpful.

What it does for me is it does seem to seriously mess with my pain responses, so while I am sure I do still have quite a lot of pain, it doesn't affect me in anywhere near the way it did, even when I was able to take maximum daily doses of codeine. It allows me to function. It is also meant to be an autoimmune modifier, so theoretically it should help with autoimmune RD, though I'm not sure I notice that much difference as I still have flares and a lot of stiffness. I suppose it must be having some effect, though its nothing like the relief I get from taking a short course of steroids (which I'm not allowed to have very often).

Dicksons Pharmacy in Glasgow is really the main compounding pharmacy (i.e. they make up the low dose formulation themselves) and in Scotland it can be supplied as a liquid (easier to manage the small doses and the initial increases) or as a capsule I think. There are some problems now with them supplying NHS England prescriptions and I think are only able to supply the capsules and not the liquid, but if you were interested you could phone them and find out the story (or check their website). If all else fails, you can get a private prescription through them, but that involves also paying for a phone consultation with a doctor.

As far as scientific trials are concerned, there have been proper medical studies done on the use of LDN with autoimmune inflammatory bowel disease that have been promising. I think there may be some limited research on the use of LDN with autoimmune thyroid problems and MS too, but very little if any on RA or AS. So, some scientific evidence of its use with autoimmune disorders. Just nowhere near as much evidence as there is for DMARDs (singly or in combination) or antitnfs.

[Simba1992 in reply to earthwitch]

Earthwitch,

I'm sorry if LDN didn't work for you. Just like hard meds LDN is not a miracle drug and does not claim to be one, even if many have really felt it to be just that. LDN is seldom a monotherapy but combined with other meds and therapies. And just like the toxic meds it does not work for everyone. There are no research studies on RA yet but there are numerous serveys done by doctors who have treated their patients with LDN and anecdotal evidence from patients. There is a lot of excitement among doctors and researchers concerning this med that is compared with toxic meds very much cheaper, without side effects and has proven to have possitive results in many AI diseases. The latest information about ongoing and planned research can be found on the above mentioned websites.

I got my LDN prescription from Clinic 158 that works with the compounding pharmacy in Glasgow. My LDN is sent to me promptly every month. This link was given to me through LDN Trust that can help anyone interested to learn more about the med. Yes there is a possibility of a phone consultation but in my case I sent a document with my diagnosis done by my rheumatologist and needed no consultation. If you are taking other meds for RA it may be a good idea to talk with a doctor who can help with the big picture before starting LDN. So it's neither hard or complicated or expensive.

I hope you will find a med that will help you.

Simba1992

[earthwitch in reply to Simba1992]

It does actually do quite a lot for me - just not the miracle that will keep my AS totally under control. There is no way I would be able to still keep working if I wasn't on LDN, as I really couldn't keep pain under control at all without LDN - even when I was able to take maximum codeine doses. I'd still jump at the chance to try an antitnf, as I think that would be likely to give better disease control, but that isn't being offered to me right now.

[earthwitch]

Not true that there have been no studies on low dose naltrexone: Here is one for a start ncbi.nlm.nih.gov/pubmed/245... (for Crohns)

Another one that reviews existing literature and research on LDN: ncbi.nlm.nih.gov/pmc/articl...

Here is a list of clinical trials of LDN (current as at 2013) lowdosenaltrexone.org/ldn_t...

As far as off-label uses go, remember that there are a lot of meds that people rely on that are already being used or have been used off-label - amitryptylline is a classic - in full strength as an antidepressant, but was used off-label for many many years in much lower doses as a pain modifier.

Finally, here is a factsheet on LDN produced for MS Patients, but linked from an NHS website nhs.uk/ipgmedia/national/mu...

[nomoreheels in reply to earthwitch]

I've not found or read any evidence that it's licensed for the treatment of RD, unless you've found different earthwitch? I was incorrect in saying no specific trials had been done for possible other uses though I've not been able to find any evidence of being it passed or licensed for treatment for anything other than opioid dependency. There seems to be lots of info for Crohn's, MS etc but still off-license, certainly nothing set in stone for the arthritis group or RD. Maybe there's a way round it, i.e. not prescribed for treating RD specifically but for the pain associated with uncontrolled RD or even Osteoarthritis for those unable to tolerate opioids. It would have been something to consider for my h who's not coping at all well with the pain of necrosis of the rib bone. Happy to be proved wrong & that trials have been performed for LDN in RD, as similarly my GP was able to prescribe amitriptyline as a muscle relaxant, basically the same, a special or off license.

Just as an aside, following results of trials for MS, Crohn's, AS etc has it now been licensed to treat these or is LDN still only prescribed off-license?

[Lulu66]

Hi, I've been on LDN for about two weeks now so early days, I asked my consultant about it and she was very dismissive and told me she could not prescribe it but I could get it on the Internet, so that's what I did because all she kept pushing me to do was go back on MTX despite my objections of it not working well and side affects of feeling sick all the time. It works out cheaper than prescriptions, tho I have it in tablet form and make up the solution myself, but it's easy do. I will post an update further down the line with I hope positive results.

[Simba1992 in reply to Lulu66]

Lulu16,

I hope it's ok. It is not always safe to order on internet. You might want to look at fb groups where you can get a lot of info and help from others who are in your situation and those who have used LDN for many years. LDN is a prescription med and to be on the safe side try to get through a doctor for ex through Clinic158.

[Lulu66 in reply to Simba1992]

yeah I know but I did do a lot of research for months and obtained it from what seems like a reputable seller that quite a lot of people use and recommended, so all seems good. Initially had a few very very vivid dreams which have now stopped, cant say i noticed the possible side affect of not being able to sleep because I struggle with that anyway. probably another month before on the recommended dose of 4.5, so still a good few months to go before i can be sure of any positive results

[Simba1992 in reply to Lulu66]

Having followed other LDN users experiences it seems that better and faster results are seen in combination with tha AIP diet.