Naltrexone

[Humbrd]

Has anyone tried Naltrexone. Someone a family member knows has taken it for years and has really helped them. I asked my ms neurologist about it and he prescribed it for me. He said it helps with Ms symptoms for some people. I gave it a try and wow did I have nightmares. I also felt very strange during the day. After four days I was off of it. But I hear it works well for others. I suppose it's worth a try.

[Sandydemop]

hi Humbrd Naltrexone is mostly used for people withdrawing from alcohol and opiates. It might be helping you reduce pain. If you take it with opiates you will not be able to feel the effects of the opiates.

[Humbrd in reply to Sandydemop]

Thanks. I tried 3 mg once a day. The doc said he has ms patients that it helps relieve symptoms. I wish it could have worked for me.

[Frances_B]

The thread on this link contains quite a bit of discussion about Low Dose Naltrexone (LDN), including links to various sites with reasonably good resources and info, including the LDN Research Trust website.

healthunlocked.com/mymsaa/p...

If you started out with 3mg once a day and only took it for 4 days then you tackled it the wrong way, and the correct titration rates are given on the LDN Research Trust website (see below for an explanation of what "titration" means).

There are many PwMS who get benefit from LDN and there are those for whom it does nothing. You don't know which group you belong to until you try it using the appropriate titration methods. The way you started taking it was pretty well guaranteed to give you nightmares - vivid dreams are a common side effect at first, and the dose you started off with was up to 6 times bigger what it should have been - starting dose for many people is between 0.5mg and 1.5mg (and some people start at even less than that). The most usual doses that people get to over a period of quite a few weeks are between around 3mg to 4.5mg for MS - but people need to find their own "sweet spot" that works for them.

Also, while searching for the old thread I found that there is an LDN Research Trust group here on HealthUnlocked - see this link. However, it is probably full of posts and threads about lots of diseases and health problems in addition to MS, as many thousands of people around the world take it for other conditions, not just MS.

healthunlocked.com/search/c...

And while Sandydemop is correct in saying that Naltrexone is used for people with alcohol and drug addiction problems, its use for those people is a totally different prescribing regimen and dosage (e.g. 50mg a day) . For those people it is intended to block the endorphins which they get when consuming alcohol or taking whatever drug is their problem, and thus reduce the "pleasurable hit" they get from those substances. So, yes it is correct that it will block the effect of opiates, but that is what it's meant to do for people with addiction problems. The way it is used with MS and other conditions is totally different in that it only blocks endorphin production for a very short time.

You need to be very clear when you talk about it that you are referring to Low Dose Naltrexone as many people have never heard of it or are not aware of its use in auto-immune conditions. This is partly why it is so often just called LDN - not just because it's shorter to say and write, but because people are ignorant and the minute Naltrexone is mentioned they assume that it is in a alcohol/drug addiction context.

So, before you write LDN off as not doing anything for you, go and learn the about the correct usage of LDN with MS, and then consider trying it again using the appropriate and proven dosage titration. You may still find that it does nothing, but at least you will have tried it properly. And be eternally thankful you have a neuro who is "with it" enough to prescribe it for you - some people have incredible problems getting prescriptions even though there have been no problems found with the tiny little doses used for auto-immune conditions like MS.

(Note - the term "titration" means to gradually increase or decrease the dose of a drug over a period of time - e.g. people on steroids for a period of time often have to increase or lower the dose gradually over time to minimise side effects, ditto with antidepressants and quite a few other drugs)

[Sandydemop in reply to Frances_B]

Hi Frances, thanks for the clarification. I have been “symptomatic.” What MS symptoms does it treat?

[Frances_B in reply to Sandydemop]

That's a question I can't answer - because it depends on the individual. Some people say it significantly helps their fatigue levels, some say it helps with spasticity while some find that spasticity may worsen a bit - either initially or all the time they are on LDN. It is noted on the very earliest LDN website that some people who do experience increased spasticity or muscle spasms may find that 3mg is the highest dose they can take. Some people just generally feel better while taking it - possibly due to slightly increased levels of endorphins in their system - it's thought that after endorphin production is blocked for a couple of hours by the LDN that your body revs endorphin production up a bit to compensate and that this is part of how LDN works for some people. Some people say it improves their mobility, others reckon it reduces their pain levels.

When I first started on it about six years ago I was hoping for improvements in fatigue and mobility - which I didn't get. What I did get (which was totally unexpected) was the opposite of what some people experience - I found that my very disrupted sleep patterns improved within 5 days of starting on 1.5mg. I also had an improvement in bladder function, with night-time toilet visits going from 3 or 4 every night down to 1 or 2 per night. I was also experiencing major muscle spasms in my lower legs at night and first thing in the mornings, and I tried the recommendation to switch my LDN dose from around bed-time to in the mornings but it made no difference. However, when I stopped injecting Rebif (with the knowledge of my neuro), all my muscle spasms disappeared within 3 days - and I have symptom tracking graphs that confirm these time frames.

So - I can't tell you what it will do for you, if anything. The only way to find out is to try it and see what happens. At this stage it appears fine to take it with all of the conventional MS drugs as it doesn't interfere with their modes of action. There are some websites which are exceptionally cautious and say that LDN shouldn't be taken with some conventional MS drugs because it "stimulates the immune system" i.e. they are effectively saying that it theoretically "clashes" with immune-suppressing drugs used in MS. However, as far as I can find out, this is a pretty common misinterpretation of the way LDN "works" as it is not an immune system stimulating drug - it's not known exactly how and why it works, just that many thousands of people find that it does help them, and some find that it doesn't. Go and do some homework on the websites that are on the links in that other thread.

One final word - don't get sucked into some of the BS that some self-appointed but ill-informed LDN "experts" are posting on some sites (e.g. Facebook et al) that LDN could be a treatment for COVID-19 - at the moment the number of crack-pot claims going around about things that might be a cure for COVID-19 is growing almost faster than the virus's infection rate in the USA ( the suggestions made by a certain person with an orange face regarding injecting disinfectant come to mind - aaarrrgghhh!!!).

[Ruadh in reply to Frances_B]

Francis_B - You know your LDN. Excellent. Right on. lowdoseresearchtrust.org is the main LDN 'go-to' information site. It is a registered charity in the UK. Several doctors who are involved in the research projects and they form a very helpful background. The whole site is well monitored. It does cover many health problems, but, there are areas that deal with specific health problems.

Of interest, is that for some patients, taking LDN in the morning deals with the nightmare / dreams situation.

Correct. For some patients, LDN does not always work that well, whilst for others it gives amazing results.

For myself, I have taken LDN for several years - was not for MS. Worked very well indeed. Now awaiting my appointment to consult with the neuro for MS. Following that, it will be back to LDN - hopefully with a prescription on the health system.

Hope this helps members by clarifying a few points.

[kdali]

I have not but I get asked if I have tried it 😂 I don’t think you should stop taking a any med without discussion with your MD. Perhaps they will adjust your dosage, frequency or time you take the med, but at least give your provider the chance to help you with it. I wouldn’t want to have nightmares either, but your doctor has probably already heard this complaint before and knows what to do about it. I hope you can get it sorted. GL!

[Frances_B in reply to kdali]

The problem is that if Humbrd's neuro prescribed 3mg as a starting dose and did not advise that a titration process should be used with LDN, or give Humbrd any info about the most common side effect when starting LDN (vivid dreams) then even though that neuro is "with it" in prescribing it they are clearly not experienced in its use. Although lacking knowledge about how it should be taken, there are some doctors quite happy to prescribe it because they are OK with the reports from patients about potential benefits, plus there are no significant side effects at the doses used in auto-immune conditions like MS (only irritating ones - like vivid dreams initially). The best thing Humbrd can do is to spend some solid time on the LDN Research Trust website getting to understand how LDN is meant to be taken, and print off some of the prescribing info etc to take to their neuro. And some people need to take it more slowly in building up to whatever might be their optimum dose, and need to start at a very very low dose first up.

[Humbrd in reply to Frances_B]

Thank you for all of this great info. I wish I would have started it on a very low dose. Since I still have the prescription ( insurance doesn't cover) I may think about asking my Dr if I should maybe start with 1/8 of a pill or less. But I can say that I'm a little bit afraid of having those nightmares again.

[kdali in reply to Humbrd]

That sounds like a solid plan! One issue may be cutting the pills, and I would ask the pharmacy tech to do this if you have any vision issues or hand numbness.

I have zero advice to give about how to take another dose and not have anxiety about more nightmares 😵 Please let us know what happens!

[Sandydemop in reply to Frances_B]

Hi Frances, thanks for the info. I will do some research and talk to my neurologist. I’m having trouble walking and don’t want to do Cortizone or the iv

Medications if I don’t have to. Thanks again,

[Sandydemop in reply to Sandydemop]

I don’t want to take Cortizone again I took it three times and it worked for a little while in terms of strength and stability but I gained about 30 pounds and then lost the Gains I made.

[IFwczs]

Please see my Naltrexone post here and 23 replies:

healthunlocked.com/mymsaa/p...

What I found out was any MS patient on any DMT (and I am on Ocrevus) may not take Naltrexone.

[Sandydemop in reply to IFwczs]

Hi, what was your experience?

[IFwczs in reply to Sandydemop]

Once I found out that MS patients on DMTs (and I was on Ocrevus) should not take it, this was out of the question. It was actually the information that Frances_B sent to me where I read it - you are welcome to read it on my post.

Also, I believe that particular doctor who recommended it to me has questionable ethics. I have decided to take a different route.

[Wizardsmom]

Hi, I took LDN for MS and pain. It helped quite a bit! I started small at 2.5 mg for 2 weeks then went to the recommended 4 mg a day. My neurologist was all for it. The reason I am no longer on it is because I had major knee surgery and needed to take opioids for the pain. When I started the LDN again, it didn't seem to help as much so I discontinued it. As with any medication, clear it with your neurologist. I am also on Ocrevus too, by the way.

Good luck!

Krissy