LDN mystery

[mazkim]

Hi. I’ve been taking LDN for a few months now and have tried doses between 1.5 and 4. I’m def finding the lower doses work better however there seems to be no rhyme or reason why some days it’s obviously making a positive difference where other days, no difference to my pain at all.

I suffer with neuropathic pain following a spinal cord injury. Any thoughts would be most appreciative. Thanks

[aredtigress Administrator]

Many patients find a lower dose works better, you're not alone in that. Everyone responds differently to LDN, in both dose and how long it takes for full benefits. Many feel the effect is cumulative, as some benefits can take up to a year. Personally, it took 4 months for the first pain relief to happen, and almost a year for others (I have multiple pain issues).

My favorite quote from another LDN group, this is a journey - not a race. Time and patience

I hope this helps,

Michelle

[milkwoman]

I’m experiencing the same thing. I started with 1.5 mg and worked my way up to 4.5 mg. I went back down to 3.0 mg because I felt the higher dose was increasing my Sjogrens symptoms. I’m a complicated case since I have SLE, Hypothyroidism, Iron Deficiency and am also on HRT for menoupausal symotons.

I don’t know if LDN is helping or not but plan on sticking with it for at least 6-8 months before deciding.

[Fybromyalgialdn in reply to milkwoman]

How are you now? Struggling with fibro pain. Taking Ldn but not sure if joint pain is from Ldn or needing Hrt which i stop.

[milkwoman in reply to Fybromyalgialdn]

Well, I did stick with LDN and have been on 4.5mg since my response to this post. Just recently I tried to increase to 6.0 (doing so in stages) but I didn’t like how I felt on that dose (it disrupted my sleep and I just felt “off”) so I’m staying on 4.5mg. It’s been a couple weeks back on 4.5mg and I’m feeling much better. It might take a bit for a consistent sleep pattern to return.

As I wrote 5 years ago, I’m a complicated case so I deal with fatigue and pain on a daily basis. But, I do believe it would be worse if I wasn’t on LDN.

[Fybromyalgialdn in reply to milkwoman]

I’m exactly the same pain and fatigue. But since on Ldn sleep is terrible. I wake every hour. But had helped with pain and inflammation. But my original question was did you have more pain from Ldn when you started at first?, like added joint pain?I felt like I did, but not sure because thought joint pain was because I needed Hrt being 50 and menopausal. Joint pain has subsided but I was in pretty bad shape at first. I’ve been through insomnia, dizziness and now nausea. Currently up to 3.5md last two days. That just started the nausea. I’m hoping all the symptoms subside at some point. Just wondered if you took Hrt with your Ldn and if you had experienced joint pain at any point?

[milkwoman in reply to Fybromyalgialdn]

I’m not sure I can answer your question. I was already on HRT when I started LDN (and I plan on staying on HRT for as long as possible).

I can have joint pain for many reasons as I have SLE, Sjogrens and Hypothyroidism. Currently, my joint pain is well controlled by the many medications I am taking, specifically, Plaquenil, Levothyroxine, Liothyronine and LDN. I suppose being hormones, my HRT plays into it all but truthfully, I attribute my pain relief more to the Plaquenil and Thyroid meds. It’s been so long that I’ve been on LDN that I can’t recall specifically if I had any of the symptoms you are experiencing but I do know for me, I had to take increases very slowly.

My LDN is compounded and actually something that might be helpful is, I was experiencing nausea early on but it was due to the filler ingredient in the compounded capsule. Turns out, I’m very sensitive to fillers, especially Avocel (microcrystalline methylcellulose). So, my compounding pharmacy now uses acidophilus as my filler.

[Fybromyalgialdn in reply to milkwoman]

Thanks for the info!!