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EllieSavory #512834 10/01/15 04:59 PM
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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?


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #512837 10/01/15 06:16 PM
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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).

EllieSavory #512845 10/02/15 01:39 AM
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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.


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #512846 10/02/15 02:26 PM
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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.


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #512912 10/08/15 10:03 PM
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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!


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #512923 10/09/15 02:53 PM
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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.


I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #512991 10/15/15 10:16 PM
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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."

Last edited by EllieSavory; 10/15/15 10:17 PM.

I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #513034 10/22/15 09:31 PM
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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.

Last edited by EllieSavory; 10/22/15 09:32 PM.

I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #513159 11/06/15 03:22 AM
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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!

Last edited by EllieSavory; 11/06/15 03:37 AM.

I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
EllieSavory #513218 11/13/15 04:58 PM
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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.



Last edited by EllieSavory; 11/13/15 05:00 PM.

I have Reiter's Syndrome, an HLA-B27 disease similar to AS. Diagnosed 2008. I used Humira and methotrexate until 2012, when I was diagnosed with leiomyosarcoma and given a hysterectomy and a 26% chance of 5-year survival. Cancer-free ever since I stopped taking Humira and methotrexate; trying to trust medicine again. In a mobility scooter since 2013 with joint pain and disease-related stress fractures. Uveitis. Eyes and joints flare whenever I stray from a severely limited diet (NSD+).
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