Thanks, hopeful. I've been hearing about LDN on several websites I frequent...particularly the Sjogren's website.

So I've done some research. I was so delighted that it was my new doctor's idea because that indicates to me that he is very enlightened.

I started at one mg, and will titrate up one mg per week. I'll keep you posted, I'm very optimistic.

Oh, he asked me if I'd tried acupuncture, and I confessed that not only had I NOT tried it, but I am so very skeptical that I doubt if I would have good results.

I also am highly skeptical of chiropractic....probably one of the very few.

Regards, ElaineE

Dear PN Angels,

I began LDN three weeks ago, starting at 1 gm per night. I'm now up to 3 gm, with a max of 4 gm the following week.

I have so much less pain, it is quite amazing!

My greatest pain relief came from Cymbalta, as you know. But eventually I developed side effects so serious I had to discontinue Cymbalta.

LDN is wonderful, but not quite as wonderful as Cymbalta (before the side effects, of course).

But perhaps with one more gram I will find perfection?

Even if not perfection, this pain relief is wonderful.

Interesting thing about pain: When it is there, it is unforgettable. When it is gone: It is difficult to recall how horrible it was.

I guess this forgetfulness of pain is a blessing. And yet, I know I should be more grateful that is it gone.

Hugs, ElaineD

I have found as close to perfection as possible for my complex conditions that cause pain.

At 4 mg Low Dose Naltrexone per night, I sleep, and wake, with no pain.

I am dazed and amazed.

Hugs, ElaineD

I begin having some (possible) unpleasant side effects from 4 mg of Naltrexone.

So I cut back last night to 3 mg, and it was better today.

Tonight I am trying 2 mg. The point is to take enough to feel as much better as possible, without triggering any unpleasant side effects.

What I was (possibly) experiencing at 4 mg was:

1. Irritability, impatience and anger (so unlike me).

2. Urinary retention.

3. Sick headache.

4. Difficult getting back to sleep once wakened at night.

5. Nausea.

6. Upper GI sharp pains and loud rumbling.

7. Actual increase in some pain, which is weird.

8. Runny nose.

Now I thought I could be 'getting sick' but I've been only IVIG every 4 weeks for Immune Deficiency, and haven't had an infection (some cold sores only, that virus would survive a nuclear blast I believe) once in 4.5 years.

So, all those symptoms seem a bit better today. With LDN the dose is truly so small that there is no worry of withdrawal when changing dosage, and the improvement would be immediate, when there are changes.

So I will keep you all posted. This LDN is the latest thing, and I'm glad to be trying it.

Regards, ElaineD

Elaine,

I hope You will find the dosage that gives you the best relief and the least side effects. It had been so promising. Maybe every other day might be a possibility.

Unfortunately my taking daily opioids meds; LDN is not an option. Even at a low dose, might cause some withdrawal.

Thanks for the updates.

An Update:

I currently take 3 mg of LDN in the evening, and sleep almost free of pain.

I wake with generalized neuralgia (from my severe osteoarthritis, I guess). So am experimenting with a morning dose of 3 mg of LDN.

I'll meet next Monday with my Duke Pain Specialist and get his feedback about the daytime additional dose of LDN. It may not be a good idea, medically, but it does work!

I have occasional nausea but it isn't bad, and doesn't last all that long. Otherwise most of the side effects are gone.

Regards, ElaineD

Hi Elaine - I know this is an old post, but if you get it I was wondering if you're still on LDN and how that's working for the PN.

I've been on LDN for 4 years for other pain issues related to ME/CFS.

When I was recently diagnosed with "severe" Idiopathic Axonal Polyneuropathy my neurologist seemed surprised that I turned down his offer for pain medication because I wasn't in any significant pain. It didn't dawn on me to mention that the LDN I've been on for years could be possibly be the reason for that.

The PN has been slowly progressed for least 7 years and though I have significant problems with numbness, balance, fatigue, and autonomic nerve related problems, the pain thus far has been minimal. Just thinking the LDN may be why.

I had tried going off LDN in the past but my back pain returned with a vengence.

1 mg does the trick for me - after trying doses up to 4 mg.