K
killerzoey
Guest
We've had a post going recently discussing the treatment of Low Dose Naltrexone (LDN) for Crohn's. I wanted to start a new thread now as I have just taken my first dose tonight and want to share my experience. Kind of like what Kev did with Prednisone : )
I am not sure how well I'll be able to chart progress, however, as my symptoms these last several days are at an all time low ince diagnosis. I only have:
Bloating (rare for me these days...possibly because I fasted for Pill Cam yesterday or ate too many raisins?)
Fatigue. So does my husband and toddler at the moment, however, so it's possible we're all fighting something that's "going around"
Sore throat. However, I know this is part of my illness as I've had it on and off since April. It came at the same time as my URQ pain and gnawing hunger that eventually led to my Crohn's diagnosis.
Blurry vision that comes and goes. Ophthalmologist did not find any inflammation in my eyes, however I think it's strange this came on at the same time as my GI symptoms so I am mentioning it.
My horrible right sided pain seems to have lessened to almost nothing. I had pain in my hip/lower back/lower abdomen area at first that was so radiating and hot that I could not tell if it had an intestinal component or not. It became more specific over the course of about a month until finally I felt it only in my low right buttock and hip joint. I flew to Oahu to see a rheumatologist (there is none here on Maui) who said "Quadratus Lumborum" and gave me some stretches. I don't know if it was the stretches or the mad sprint through the airport in Oahu trying to catch my flight back but nearly immediately following the visit my symptoms lessened. I nearly certainly know, however, that I will need to re-attend to the "big picture" regarding my rheumatological symptoms, as these were but the latest round in a cycle of pain.
Treating or diagnosing this stuff is like trying to hit a moving target, isn't it?
Anyway, that's where I am as of today, for what it's worth. I'll let you all know how it goes with the LDN.
By the way I'm taking the transdermal cream developed by Dr. Jaqueline McCandless for autistic kids. She suggested starting with the cream as it allows me to tinker with my own dose and find the one that works for me, plus it eliminates the variable of fillers which can cause issues with some people.
4.5 mg is the dose that is recommended for anyone over 100 lbs., so I dove in and started at that dose. If that works for me I assume I'll get pills shipped out at that dose, with the Avicel (non-digestible fiber) filler that Dr. McCandless's pharmacy uses. If I have a reaction I assume I can just continue with the transdermal cream. Heck, I may want to do that anyway.
I am not sure how well I'll be able to chart progress, however, as my symptoms these last several days are at an all time low ince diagnosis. I only have:
Bloating (rare for me these days...possibly because I fasted for Pill Cam yesterday or ate too many raisins?)
Fatigue. So does my husband and toddler at the moment, however, so it's possible we're all fighting something that's "going around"
Sore throat. However, I know this is part of my illness as I've had it on and off since April. It came at the same time as my URQ pain and gnawing hunger that eventually led to my Crohn's diagnosis.
Blurry vision that comes and goes. Ophthalmologist did not find any inflammation in my eyes, however I think it's strange this came on at the same time as my GI symptoms so I am mentioning it.
My horrible right sided pain seems to have lessened to almost nothing. I had pain in my hip/lower back/lower abdomen area at first that was so radiating and hot that I could not tell if it had an intestinal component or not. It became more specific over the course of about a month until finally I felt it only in my low right buttock and hip joint. I flew to Oahu to see a rheumatologist (there is none here on Maui) who said "Quadratus Lumborum" and gave me some stretches. I don't know if it was the stretches or the mad sprint through the airport in Oahu trying to catch my flight back but nearly immediately following the visit my symptoms lessened. I nearly certainly know, however, that I will need to re-attend to the "big picture" regarding my rheumatological symptoms, as these were but the latest round in a cycle of pain.
Treating or diagnosing this stuff is like trying to hit a moving target, isn't it?
Anyway, that's where I am as of today, for what it's worth. I'll let you all know how it goes with the LDN.
By the way I'm taking the transdermal cream developed by Dr. Jaqueline McCandless for autistic kids. She suggested starting with the cream as it allows me to tinker with my own dose and find the one that works for me, plus it eliminates the variable of fillers which can cause issues with some people.
4.5 mg is the dose that is recommended for anyone over 100 lbs., so I dove in and started at that dose. If that works for me I assume I'll get pills shipped out at that dose, with the Avicel (non-digestible fiber) filler that Dr. McCandless's pharmacy uses. If I have a reaction I assume I can just continue with the transdermal cream. Heck, I may want to do that anyway.
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