LDN (Low Dose Naltrexone) Questions.

[Carolina]

Dearest Sjogren's Angels,

I'm in my fourth week of LDN and several issues have recently arisen. 

I need feedback from those who are on, or have tried LDN.

Now given the complications of my 'conditions' it is always hard to know what is causing what, but these are new or worse symptoms:

1.  Nausea (I'm never nauseated)

2.  Headache (more a sick headache than my usual DDD headache)

3.  Abdominal cramping and sharp pains  (new)

4.  Fatigue (worse than usual)

5. Irritability, impatience, even anger.  This last one is really difficult, and so unlike me.

6.  Myalgia and joint pain, which came back after some time on LDN without the symptoms.

7.  Difficulty getting back to sleep at night, once awake.

Any thoughts and experience will be helpful.  There is very little written about LDN side effects, but they are fairly rare.

The positive side of LDN is that my shoulder pain is GONE, and general pain from OA is eased, as well.

Regards,  Elaine

[SjoDry]

Elaine,

I have been on LDN since Aug. 22, 2017,  Intermittent nausea is one of my symptoms. But as you suggest, it is difficult to know which symptom is caused by illness or a medication (I also had it before starting LDN). I have not had the headaches. I do have the wakefulness (both from the LDN & from pain). However, I always take something to help me sleep like Melatonin or Nyquil with my LDN. I also take Alpha Lipoic Acid as suggested by Dr. Burk Berson (and Vit. B complex). The Alpha Lipoic Acid (He advocates the European brand) is supposed to help with neuropathy and nerve regeneration. Most of the time I am able to get back to sleep. I was also having some G.I. issues (again..is it CVID, SS or medication or a combination of all?) Because of this, I am having the compounding pharmacy make my LDN in troches that go under my tongue.

I have not had any stomach pain or cramps. My mood is good, no irritability. My pain has lessened (not as much as I would have liked, but still an improvement..maybe 20-30%. My fatigue level has been helped the most. I had debilitating fatigue before (requiring a couple of brief naps on my office floor cushion daily). Now I rarely need to do that. I still get very fatigued a few days before my Hizentra infusion and a few days after my infusion..but in that small window of optimum functioning, I feel great (something I haven't felt in years until starting the LDN).

I don't recall where I read it now, but I do remember reading that it can take a long time to help some people. I guess it is like a lot of us, do we want the symptom or the side effect, it seems like it is sometimes a trade-off. I have seen some people in my LDN forum experiment with their doses. Some of their side effects will subside at a lower dosage. Or like me, they add something to help them sleep and stay on the larger dose. I have Zofran (under the tongue for nausea) it works quickly.

Overall, I am very happy with LDN. For the amount of pain relief and the lessening of my fatigue, it has been worth it to me.

Hope you feel better soon.
Take Care.
SjoDry

[Carolina]

Thanks SjoDry,

I've taken Alpha Lipoic Acid for maybe 10 years, so that's a plus.  I also take 3600 mg of Gabapentin which stops the nerve pain from PN and SFN, so my only remaining pain is Osteoarthritic pain.

I have CVID also, but normal IgA, and with IVIG every four weeks I haven't actually had an illness (except cold sores) for 4.5 years.  That is not to say I don't have flares associated with my Immune Disorder, and I also developed IBS in the past year, so that has 'unpleasantness' which can seem like an infection, but is not.

LDN helped me immediately, at 1 mg nightly, in the first week.  I increased the dose as instructed, and at 4 mg nightly the (possible) side effects began: the ones listed in my original post. 

So, I've decided to reduce my dosage from 4 mg, back to 3 mg.  I did that last night, and slept well.  I may even go back to 2 mg.   I really felt fine at 1 mg, and only increased as instructed and looking for Nirvana, I suppose!   

Another question:  How much is your LDN?  The compounding pharmacy near us charged and enormous amount (IMHO), $145, for 120 1 mg capsules.  That seems high for a generic that has been around for ages.  I'm going to check to the compounding pharmacy that I use for Estradiol. 

So I'm taking less, to see if that helps with perceived side effects.

It IS always something, and then it's something else.

Hugs,  Elaine

[SjoDry]

I paid $35.00 for 30 capsules, but I pay $55.00 for the troches. I think my doctor will begin writing the Rx for larger quantities now that he knows how well it is working for me. I have an internist friend who writes it for 50 mg capsules (covered by insurance) and she dilutes them with distilled water. It brings the cost down to a penny a day vs. a dollar a day compounded.

Glad that changing the dosage helped.
Take care.

SjoDry

[WhatYouSjo]

Hi Carolina. 4 mg is at the high end of what most experienced LDN users would recommend. I started using LDN nearly two years ago, and increased my dosage gradually to about 3.5 mg. Then, I started experiencing intermittent waves of vertigo. I stopped taking LDN, and they gradually went away. I started using LDN at around 2 mg, and the vertigo gradually came back, though less frequently or seriously. I dropped back to about 1 mg, and I've basically been side-effect free since. I agree that the dosage is likely to be the issue, and I recommend dropping your dosage, perhaps even back to 1 mg, since you saw benefits there.

Like SjoDry, I get my Naltrexone in 50 mg pills. I dissolved them in 50 ml of distilled water for a few hours. Then I shake the bottle and use a medicine dropper to dose 1 ml each day. It is much cheaper than using a compounding pharmacy.

[warmwaters]

I like the advice of dropping the dose. When I was using LDN I maxed at 3 mg, 4 was too much.  Timing matters too. I use to take LDN about 1 - 1/2 hrs before I planned to go to sleep, so that I went to bed just as I was hitting a drowsy period that I had with it.

Don't have my notes here, but don't remember much in the way of side effects after the first couple of weeks. Obviously there was some, as I went from 4 back to 3. Wish my memory was working this morning!

[Deb 27]

Carolina, LDN 3 mg made me feel worse. My pain was way worse, everything hurt. It's been a while so I can't remember the other symptoms. Maybe if you lowered the dose, it would work? I think I paid $36 for 30 of them.  I was so hoping it was going to help my auto immune diseases. However, I do feel I've gotten some help from the supplements that I take, more energy, less pain and my thyroid is finally straight after 10 years of bouncing up and down. I take L glutathione and quercetin with bromelin. Good luck with the LDN, I hope you can make it work for you.

[Carolina]

Thanks for your response, Deb 27.

We are all do different, so it is hard to know what our own experience will be like, with any medication or supplement.

The case with LDN is that there aren't large population studies (yet) that will provide a base-line for what to expect.

I found that below 3 mg LDN, my shoulder pain returned, making sleep very difficult.  My shoulders needs joint replacement, and I simply cannot contemplate that surgery.

At 3 mg LDN I am very sleepy during the day (I take it at night).  So I feel a bit zombie like right now.   I'm hoping this sleepiness resolves over time.

The other side effects listed in my first post here were those I experienced at 4 mg LDN, and they seem to be gone at  3 mg.

This is all so difficult, isn't it?   

I take a large variety of supplements, some for over 20 years.  One day we should all compare supplements.  That would be interesting, don't you think?

Regards,  Elaine

[Nymph]

Elaine, I only took 1.5 mg of LDN or I would have side effects. Hopefully reducing the dose you will find your happy place.

[Maria3667]

Hi Elaine,

I never managed to go beyond 1.5 mg. The nausea passed after the first week.

But LDN made dry mouth so much worse! On the positive side it did increase eye moisture. Initially I seemed more socially involved, until anxiety set in after a few weeks.

Weird side effects: zits on my face. LDN and I are no longer friends...

Take care,
Maria

[Carolina]

Dearest Angels,

Here is my update on LDN.  I have only been on LDN since the 18th of December, so it is still 'early days' I think.

Dosage:  I have settled (for now) on 3 mg/night.  I still have some pain, but many of the side effects are manageable at this level. 

Nausea:  I sometimes have nausea in the morning, but it seems to be gone by afternoon.

General Sleepiness and Fatigue:  Still noticeable.  I know how hard it is for many of us to 'tease out' side effects from the general malaise of our (often many) conditions.  But I find myself nodding off in the afternoon, which is very new for me.

I am re-reading How to Be Sick, by Toni Bernhard.  I need to be reminded that struggling against my conditions only increases my general misery.  Struggling against my reality is not the same thing as doing everything in my power to help myself cope with my conditions.   It is the sorrow and anger I feel from my 'losses' that is so natural, and yet they cause me even more misery.  Of course my feelings will 'come and go' and Toni Bernhard helps me remember that I don't need to take any one set of feelings as the permanent measure of my life.

Helplessness:  Because I can now only walk with a walker (or a grocery cart on the few occasions I am out and about for more than doctors' appointments) I often feel very helpless.   I miss cooking and cleaning, buzzing from room to room, going up and down stairs, jumping in the car to run an errand (I no longer drive).  I miss feeling useful to others most of all. 

I am having Physical Therapy to strengthen my back and my 'core'.  The exercises exhaust me, which can set off that cycle of sadness and anger that I mentioned above.   I find it hard to accept that my Immune Disorder has not stopped giving me 'new gifts'.  And that no one treatment or set of exercises will be my 'salvation' at this point.

I want to be useful and kind, especially in these forums.  This hasn't been so easy for me, lately. 

Hugs,  Elaine