After doing a fair amount of research and securing a prescription via phone appointment with Dr. Shepard of RDS Infusions in Tampa, Florida, I'm ready to try LDN.

Dr. S. is having me start at 1.5mg for the first couple weeks and 3mg for another couple weeks, going up to 4.5mg. Dr S. works with a compounding pharmacy in Boca Raton called Skip's: the tiny gelatin capsules they sent me contain naltrexone, avicel filler, and a little powdered beet juice: the filler has worked out for me before; here's hoping I don't react to the capsule or beet juice.

I'll take my first dose of LDN tonight, and will report what happens tomorrow.

I'll especially be watching my left ankle (where the arthritis has taken the form of swelling and pain ever since I had the tinest of injuries in early June) and my right forefoot (where I either have two stress fracture dating from January that STILL haven't healed, or I have arthritic inflammation and pain on the site where the stress fractures used to be.) I'll also watch the acne situation on my face (it's a marker of inflammation) and a large burn on my left foot, since LDN supposedly helps with tissue repair. If I get an increase in joint pain, the arthritis likes to flare in my right-hand fingers and shoulder, so I'll pay attention to those areas too.

The other place the arthritis loves to flare is my eyes. One person with AS claims she hasn't had a single eye flare-up since she started taking LDN. Wouldn't that be something?

My goals: well, in my fantasy, I'd be being able to walk and eat normally. I'd finally get out of this damn surgical boot and kiss my mobility scooter goodbye. I'd be bicycling, dancing, walking all over town, and eating whatever I want.

Okay, but my realistic short-term goals are more modest and open-ended: less pain, more mobility, less food sensitivity, fewer eye flare-ups. My twice-yearly dental check-ups are the only time I ingest anything outside my super-careful diet, and when I went in April, I woke up the next morning with terrible joint pain and an eye flare-up. It would be awfully nice if I didn't react so dramatically after my next trip to the dentist at the end of October.

The doc said the LDN will take two or three months to kick in, but some people with arthritis report improvement within the first few days. As for side effects, I imagine they'll crop up soonest of all.

I feel hopeful and curious, but wary, too.

I'll be following your progress with interest Ellie as I've started back on LDN a week ago myself.

I first tried it a couple of years back and noticed good results initially on the 1mg per night dosage for the first month. By the time i got up to 4.5mg, the benefits appeared to have worn off, but I dare say this could've been due to my being less vigilant with my diet after getting over confident with my initial reduction in pain levels.

Hi William! I hope you'll tell me about your own progress too.

I have read that insomnia and vivid dreams can be a side effect as people adjust to LDN, and while I'm sure I must have slept last night after taking my first dose, I was often awake.

I've also read that people can experience a transient increase in joint pain while adjusting: I have some R shoulder pain and R little finger joint pain I didn't have yesterday.

On the up side, this morning I noticed more rapid healing than usual on my burn and on an acne scab.

For now, I'll stick with it, unless the shoulder pain becomes distracting.

One health professional online (link below) has said that for patients with multiple chemical sensitivities, starting at .5mg and working up from there can work, so if the shoulder pain persists, perhaps I can stop and try again at the lower dose.

https://sites.google.com/site/dudleyslowdosenaltrexonesites/home/side-effects-and-dosing-of-ldn

LDN: day 2.

I was super-tired yesterday evening, so I may, indeed, not have slept well my first night.

Again, I had the sensation of not sleeping well last night after my second dose, but I also had vivid (though now forgotten) dreams, so I know I slept some.

My burn continues to heal more rapidly than usual, and some minor inflammation in the L corner of my mouth (I learned it's called "angular cheilitis") looks better than it has in months.

The R finger pain I mentioned yesterday is gone (yay!), but the R shoulder pain is the same or worse.

I will ask Dr. S. if he would be open to prescribing a lower dose, and I'll look into a compounding pharmacy near me that works with LDN (Irmat, in NYC) to see if they can make the medicine without beet juice powder, just in case my shoulder's reacting to that and not the LDN.

If my shoulder calms down the way my finger did, I won't need the .5mg dose, but if not, getting it now will save me the compounding and shipping time. My bottle of 90 1.5mg capsules was $46 with shipping, so it won't break the bank to have an alternative to hand if I need it.

(Why beet juice powder, anyway? It's a dye. "If I'm combining two powders, I need them to be two different colors so I know they're mixed evenly," the compounding pharmacist explained.)

I remain hopeful.

Ellie - hope last night was a better sleep. Can take a few weeks not only for LDN to kick in, but also for the body to get used to it and not react, means, to get over vivid dreams or a rather restless sleeping pattern.

There is no real need to titatyrate up to 4.5 mg. If doing good on a lesser dose then stick to the lesser dose.

Be careful of bread and pastry foods and also cut down or cut out red meats. Red meats = inflammation. Check out inflammatory foods and also anti-inflammatory foods. So one has to be careful of starches and inflammatory foods. I know, what a bore. But LDN with diet should be the real winner for you. BTW Skips is excellent. Has a great reputation.

Take care, go well -

Molly C - Keeping on Keeping on (as we do, innit ?)

William, suggest you titrated too far up the scale. When going back on LDN, start real low and slow. When you reach say, 3.5 and if doing good at that level, then keep to that level. You are not obliged to to to 4.5 or 4.75.

I`ve been on / off LDN for about 10 yrs no. I only take 3.5 mg. When I take a break from the LDN, then I go right back down the scale, and slowly titrate back up to my usual dose.

Remember, no bread or grain starches, and no red meat. See my note just now to Ellie.

Take care -

Hi Molly

Are you saying that going too high can negate the effects of a lower dose?

Indeed, I was overjoyed when I started out on 1mg for the first month as it seemed to have an immediate positive effect.

The same thing happened when i intoduced lactoferrin and align probiotic - great effect initially then tapering off again.

Thanks
William

Yes, William. That is what has been found. Titrate up and the good effect seems to be lost on SOME people. Everyone is different.

Suggest re-start. Try for .75 and titrate to 1mg after a couple of weeks. See how you go on 1mg. If successful, stay with the 1mg. IF 1mg starts to wear off try for 1.25. Only titrate *slowly and don`t go above 3.25mg.

Keep to diet and beware inflammatory foods, especially red meat and those flippin starches -

Go well -

I have to admit that cutting out, or even down, on red meat is something I haven't really experimented with; probably due to the virtues of red meat being constantly emphasised in the paleo themed literature.

I'll reduce the LDN back down to 1ml from tonight for a while to see how I go. An added bonus shall be that my bottle of liquid shall last quite a bit longer - before I need to order more :-)

William - a bit more to help you grapple with diet problem <grin> Google up Inflammatory Foods NOW Google up Anti-inflammatory Foods. Lots of information. Also, check out the diet Forum here on KA. AND don`t forget, NO sugar... Sugars feed those Kleb blighters. And don`t substitute chemicalised / substitute sugars - aspartame, sucraloose and the rest of that toxicity. AND that includes all those granola bars... If have a sweet tooth, learn to wean off of - Yea, I know !!

Hi Molly and William! Part of why I decided to try LDN is that my diet has become so spartan and my feet STILL aren't healing: stress fractures in the R foot, tendon strain/sprain in the L. I eat chicken, salmon, sardines, cabbage, and greens. The occasional handful of berries.

Well, here's my LDN update. Day 3 (Monday): shoulder pain and light sleep. My first hot flash in a couple of years.

Day 4 (Tuesday): shoulder pain, light sleep, and 3 cold sores in my mouth. By the end of the day, my L foot pain increased from 1-2 out of 10 to 4/10.

Day 5 (yesterday): shoulder pain, a vivid nihilist dream, cold sores, and L foot pain at 5/10.

I dumped out half a capsule last night and tried .75mg.

Day 6 (today): shoulder pain, cold sores, L foot pain at 4/10. I slept deeply and I've been sleepy all morning.

Over the course of the past few days, my burn has continued to heal very rapidly. The angular cheilitis (inflammatory crud in the corner of my mouth) is starting to look a little worse.

I've called Dr. S's nurse several times to try to get a lower dose without beet juice compounded at Irmat Pharmacy near me. She left me a message Monday saying she didn't think it would be a problem, but I haven't heard from her since, and neither has the pharmacy.

It's disappointing to feel worse than I did a week ago. I'm not going to give up just yet: a lower dose might work better for me. But I'm wondering if I should stop completely and let things settle for a week before I try a lower dose, or try a week at a lower dose starting now?

Well for what it's worth Ellie, I definitely had my best results on 1mg (cherry falvoured liquid, drawn from bottle in syringe then squirted into mouth).

I'm going to go back to that instead of 4.5mg to see if it works any better, so it'll be interesting to see how we both fare over the next few weeks.

@Molly - thankfully I don't have much of a sweet tooth at all, so my diet is pretty much sugar free. I think butter may have to go off the menu for a while though, as I don't seem to do well with dairy at all (even despite having given raw milk a go for the last few weeks too).

Interesting! Glad I'm not the only one. Glad too that we're starting at roughly the same time, so we can compare notes.

Still debating wether to take a half-dose tonight or take a few days off entirely (and hopefully feel a little better) before trying again.

The person who runs the LDN group on Facebook encouraged someone experiencing similar side effects to mine to take 3 days off and try again at a lower dose: https://www.facebook.com/lowdosenaltrexone/posts/1125494340800181

Mondays and Tuesdays are the longest days in my week, so unless someone on my health team recommends otherwise, I will wait until Tuesday night and try again splitting the capsules from Skip's in half (.75mg) or using .5mg capsules from Irmat if I can get a prescription between now and then.

Woke up after my first night without LDN with less L foot pain, but the other stuff (shoulder pain, cold sores, some R thumb-joint pain that developed yesterday) persists.

Day 1, Take two!

I've gotten a new prescription for .5mg capsules compounded WITHOUT powdered beet juice this time. The only contents are the gelatin capsule, the Avicel filler that has worked out for me before, and the Naltrexone.

I still have shoulder pain and cold sores from last week, but both are fading.

Last night I took .25mg, half a capsule. This is a sixth of the dose I was on last week, minus powdered beet juice. I had the sensation of sleeping a little lightly, but not a feeling of insomnia.

This morning I woke up with my right thumb joint in pain, in exactly the same way I felt it on the first day of LDN last time around. Except this time the pain went away on its own in a few hours instead of lasting all day. Fascinating.

Will keep you all posted!

Day 2, Take two-- Well, there's definitely LDN in those capsules. I had a little trouble getting to sleep last night, and then a vivid and scary-ish dream this morning: when I woke up, it was late, and I desperately needed an extra hour of sleep on top of that.

I also woke up this AM with a ghost of that weird thumb-joint pain from both the first time around and yesterday; it's since resolved.

Shoulder pain and cold sores are no worse than before.

If I'm getting side effects at this micro-dose, perhaps eventually I'll see some benefits, too. Assuming I acclimate to it okay, I plan to spend 10-14 days at this dose and then go up to .5mg.

After 1 week at .25mg of LDN:

Shoulder pain and cold sores are no worse than before, but not better.

The weird thumb-joint pain is gone on the R side, but a more intense version of it, plus swelling, appeared on the L thumb two days ago and hasn't faded.

I've had a mild sore throat ever since I started taking the LDN the first time, but it's gotten worse in the past day or so.

I had a ten-minute wave of feeling really good for no reason two mornings ago; wondered if it was the LDN.

I've read that there are 15% of people for whom LDN doesn't really help. How do you know if you're in that 15%?

Unless I get a big scary eye or foot flare-up, I plan to tough it out for another week at the same dose and see how I do.

I'm comforted by this explanation I ran across on the following site in response to someone else who was experiencing a sore throat and joint pain after 3 days on LDN: https://www.crohnsforum.com/showthread.php?t=12099

"LDN boosts your immune system. Any infection you have been harboring is now going to be addressed by the immune system. The throat phlegm thing could be coincidental, or it could be a prior infection that has not been dealt with before.

"Arthritis is often a bacterial infection. There are several possible pathogens that can cause it. Your immune system is now trying to rid you of this infection also. Inflammation is a natural part of the immune system working, but before LDN you would become inflamed without the benefit of removal of the pathogen. With LDN your immune system becomes more effective. Once this part is over with, you should be much better. It takes months for this process to run its course.

"It is hard to differentiate healing and sickness, but if you look at it in the context of what the drug is doing, it makes more sense. LDN cannot give you a bacterial or viral infection, but it will make your body kill infections you already have. This is likely what you are experiencing now."

Today l hit the two-week mark at .25mg/day. For the past week I've had a painful/swollen flare growing in my L thumb. I really don't want to go down the steroid route with this, but the last time I had an inflamed joint like this, it lasted five months and I wound up with bone erosion.

When I woke up this morning, not only did I have the flare in the L thumb (and the cold sores and shoulder pain that began right after I started LDN the first time), I also had new pain in my other thumb and in my R big toe, the one that flared for five months. I don't like the direction this is going.

But I'm not sure I'm ready to give up on LDN completely. I'm getting my prescription reformulated in distilled water, in case fillers are the problem, and I was thinking maybe I should take a week off and then try again at .25mg every other day.

It's been two weeks since my last post, and I think I've turned a corner with the LDN. I was really upset about my thumb two weeks ago. I consulted the head of the LDN group on Facebook, Phyllis Seals, an RN who is a big advocate for LDN, Dudley Delany, and an LDN expert who's a pharmacist, Skip Lenz.

What I figured out, based on talking with all of them and doing more research on my own, is this: I was taking too much LDN too frequently.

Remember, all LDN does is block your opioid receptors, tricking your body into making more endorphins. But you don't RECEIVE those endorphins until your opioid receptors are exposed again, once the LDN leaves your body. The drug isn't what makes you feel better, your extra endorphins are. The drug doesn't help until it's gone, or mostly gone.

I also learned that while LDN does most of the heavy lifting of blocking your opioid receptors and has a half-life of four hours, an intermediary product of LDN, its metabolite, also helps block your opioid receptors and has a half-life of thirteen hours. So if you're super-sensitive to drugs like me (I got cancer from Humira, duh), and you're dosing every 24 hours with a drug that doesn't leave your body until 26 hours have passed… well, basically, I blocked my opioid receptors-- starving myself of my own endorphins-- for weeks. And THAT'S why so many joints started to feel worse, and in the case of my thumb, even flare.

Most useful advice I've found online, from the doctor who first came up with the LDN idea:

"… and we’re also finding out that some people… they’re actually taking too much low-dose naltrexone. In fact what they will do is they are going to feel that they are having a very positive effect but maybe 6 months to a year down the road they’re going to say I’m losing that effect. And I’ve already had to help about a dozen people so far about that… they reach me… and it’s not working anymore… what’s happening? Well the reason why it’s not working is because there building up too much naltrexone so their effects are not going to be as great. So what was the result of that… they had to take the naltrexone every other day and in some cases some of them are taking it every third day now… and the first thing that comes back is… oh it’s working beautifully again.” (Dr. Zagon)

I now take pure LDN in distilled water using a liquid syringe, which lets me experiment with taking tiny amounts. First I tried .25mg every three or four days. I felt an extra wave of energy, not the morning after I took it, but the NEXT morning. I caught myself singing-- singing!--as I drove my mobility scooter home two nights after my second every-third-day dose! But I still hurt like hell the morning after my .25 mg dose.

So then six days ago, I started taking .05mg/dose (that's right, 3% of my original 1.5mg dose), and it DIDN'T hurt the next morning, but I still got the vivid dreams and the extra burst of energy and optimism two mornings later. This tiny amount shouldn't make a bit of difference, but suddenly I have more energy, less pain, and less swelling. My scary thumb flare is starting to go down!

When my thumb was so bad I was thinking I might have to get a cortisone shot, I spoke with Skip Lenz of Skip's Pharmacy, a big LDN advocate. He told me he'd had juvenile onset arthritis, so bad he was going through a bottle of 100 Advil (ibuprofen) a week, just from taking them whenever he was in pain. He went on LDN, and two or three months later, he was going through the Advil slower and slower, until he didn't even use them at all. I felt a little teary-eyed hearing that story, because I wanted so badly for LDN to work for me. "Do you think I should try taking it every other day?" I asked.
"No," he said.
"I'm taking .25mg/day. Do you think I should try taking less?"
"That's a subclinical dose. If anything, I think you should try taking more."

Skip may be an expert on LDN, but for better or worse, my disease has made me an expert on my own body. I'm glad I took his advice with a grain of salt and tried skipping days, because it's such a blessing to experience the good feeling that everyone's carrying on about. I'm glad I found Dr. Zagon's advice about skipping days, above. On reflection, I have to remember, Skip's advice was coming from a guy who was physically capable of taking 100 Advil a week! (If I took that much ibuprofen, my stomach would be in shreds.) Everyone's body is different, and some people are more sensitive than others.

Right now I'm still fiddling around with the frequency of dosing, but it seems like every four days might work best for me. Again, I don't see how this could work-- it's like if someone told you to LOOK at a bottle of LDN and you'd feel better. But everyone needs to find the dose that works best for him or her. Don't let the "no pain, no gain" mindset make you stop listening to your body. Maybe this isn't supposed to hurt!

It's been a week since my last post. This past week, it seemed like .05mg LDN every four days was giving me a burst of energy that would begin 18 hours after I took it.

Last night I tried taking EVEN LESS naltrexone: I cut my dose in half to .0125 mg. I had the tell-tale burst of energy this morning, instead of waiting 18h! Great news. I'll try it again tomorrow night and see what happens.

What sucks is that my thumb is still really bad. I tried a diclofenac cream compounded in Versabase last night and my thumb was even puffier and more painful when I woke up this morning. Because I'm so drug-sensitive and Versabase was new for me, I'm guessing that it was a problem. (Unless it's the LDN itself.)

Although long-term oral NSAID use has given me GI bleeding in the past, I still keep some around in case of emergencies. I took one this morning because my thumb was really scaring me. Will report back in a week.

I last posted Friday, and it's only Monday, but I want to sum up my experiments so far:

Because I am so drug sensitive, I started using liquid LDN in order to get a lower dose. I'm still finding my way: I keep diluting my dose more and more. With each dilution I learn more about how this drug affects my body, and how my endorphins do too. At 1.5mg (every day for 6 days) I was out of my mind with rage and my arthritis symptoms increased dramatically.
At .25 mg (every day for 2 weeks), my arthritis symptoms increased slowly.
At .025 mg every four days, I felt worse for the first day, a burst of energy while exercising the second morning, followed by ecstasy for 24 hours culminating in a half-hour burst of libido, followed by a subtle boost of energy for another day. (The fourth day was just to see what would happen.) The arthritis symptoms continued to increase.
At .0125 mg every other day, I woke up briefly at 6am, felt a burst of energy while exercising the very next morning, followed by 8 hours of heart-pounding ecstasy culminating with a ten-minute burst of libido, then an hour-long increase of arthritis symptoms that faded.
At .0625 mg, I woke up briefly at 4am, woke up later feeling alert but in slightly more arthritic pain, had a burst of energy when I began exercising, and then exercise brought on about 10 minutes of heart-pounding ecstasy and a moment of increased libido, followed by a gentle feeling of serenity all day.
At .03125 mg, I woke up briefly at 2am. Woke up later in just a whisper less arthritic pain! A very painful cramp in one of the arthritic flare areas for about 30-45 seconds before exercising. No burst of energy while exercising, but a subtle willingness to go a little longer, followed by a gentle feeling of serenity after exercise.

It's all so interesting! The mood stuff is fun, but ultimately, my goal is to help with the arthritis.