I'll check the site out. I did get your reply about the Reishi. Not to threadjack, but I find it so interesting what's gone on with your son. I'm glad to hear that by you being proactive, has got him to the point he's at now. I'm so worried about Imuran. Im worried that if she takes it and gets any of the numerous side effects, or not take it and end up with the disease getting out of control.
The latest from the LDN website:
Abstract of an article from the American Journal of Gastroenterology about LDN for Crohn's:
OBJECTIVES: Endogenous opioids and opioid antagonists have been shown to play a role in healing and repair of tissues. In an open-labeled pilot prospective trial, the safety and efficacy of low-dose naltrexone (LDN), an opioid antagonist, were tested in patients with active Crohn's disease. METHODS: Eligible subjects with histologically and endoscopically confirmed active Crohn's disease activity index (CDAI) score of 220-450 were enrolled in a study using 4.5 mg naltrexone/day. Infliximab was not allowed for a minimum of 8 wk prior to study initiation. Other therapy for Crohn's disease that was at a stable dose for 4 wk prior to enrollment was continued at the same doses. Patients completed the inflammatory bowel disease questionnaire (IBDQ) and the short-form (SF-36) quality of life surveys and CDAI scores were assessed pretreatment, every 4 wk on therapy and 4 wk after completion of the study drug. Drug was administered by mouth each evening for a 12-wk period. RESULTS: Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline 4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P < 0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients. CONCLUSIONS: LDN therapy appears effective and safe in subjects with active Crohn's disease. Further studies are needed to explore the use of this compound.
Answers the question of how LDN can be acquired:
Hi ya all,
I have been on LDN, Low Dose Naltrexone, for 1.5 years. LDN is made in small 4.5 mg or 3.0 mg pills from the medicine Naltrexone or Revia (Re Via). In big doses, from 50 mg and more, it has been used as an opioid receptor blocker for more than 30 years. Under brand names like Revia or Naltrexone Vitaflo or other names). Without any known severe side effects. When using only up to the optimal dose 4.5 mg per night it's giving you far less side effects than an aspirin during the first 7 - 10 days. Then NO side effects. The known side effects are often sleep disturbances. Some can't sleep and often use melatonin or a mild sleep aid during the first week. After 10 days it's most likely you have no sleep problems. Sleep disturbances happens to 20 % of those just started using LDN. The rest have no side effects at all.
As Emom writes, there is a yahoo group where people can register to learn more by asking other Crohnies questions about LDN.
Canada: Yes, it's possible to get LDN also in Canada. Just ask when you are visiting the yahoo group. Crystal, one of those with MS is a fantastic advocate for LDN, and she keeps a list with doctors that is willing to prescribe LDN if your own doctors refuses.
Crohns kids are also doing well on LDN! Some of them have stopped using remicade or prednisone.
Being on LDN is easy since we'll get a super immune system just within weeks. Trying LDN require being patience and it's often helping avoiding your food triggers and stress. You are able to combine asacol and LDN. If you're getting a flare while on LDN taking prednisone for just a few weeks will calm the flare down. You often don't need more than 10 mg prednisone as an initial dose. According to the doctors and the pharmacists active in the group - it's no problem mixing prednisone and LDN for a short period of time. Take care!
Post Edited (BeeSting) : 2/21/2009 9:54:32 AM (GMT-7)
I am quite sure you're right, stopping a flare by using LDN is not easy. As you write, it may give you another outcome to start when things have calmed down. If you are able to use Asacol, it's ok to use it with LDN. You can also start using LDN while tapering off of prednisone. The most people I have been posting with have been adviced to start with LDN as soon as you are down on 10 mg prednisone. You could later on use a lower dose of prednisone for a longer range of time, just for the maintanance, and then in combination with LDN.
By the way, here's a link to a database that I've found, where there's a lot of LDN users filling in their experiences with LDN, and it's not only Crohns patients, but a lot of other diseases as well.
What gets me so pumped about the prospect of LDN is that it is an immune BOOSTER, not a suppressant. I understand the need for steriods in some situations, but again, they shut off the immune system like a light switch (poor analogy, but you get me). So does 6mp, Remicade, Imuran, Humira, all the new stuff. I don't want to shut down my immune system so I can worry about cancer and liver disease later.
Post Edited (ExJohnson) : 2/27/2009 4:42:11 PM (GMT-7)
In all my research on Crohn's it seems there are two schools of thought as to how to treat it, although they all follow the same two step program. 1. Manipulate the immune system, and 2. limit damaged lining. Traditional medications like 6mp and Remicade and steroids, and even your sulfasalazines are immuno-suppressants, meaning they weaken the immune system enough so that it doesn't have the energy any more to attack you. Once syptoms are restored than the lining of the intestines can be healed, but not all the time, and so sometimes surgery is seen as an option to limit damaged lining. The other school of thought is the immuno-booster manipulation, give people asian mushrooms, probiotics, chlorella, organic foods, aloe vera juice, and other like foods and this slow process boosts the immune sysem (some would say 'corrects it') and you then take glutamine powder or soothing foods to heal the lining. This natural approach takes a long time, needing fasting to prep the body, a detox to clarify the immune system, and generally a 100% slow down on every aspect of your life except concentrating on healing.
What is so great about LDN is that it is an immuno-booster that works faster than the 100% natural approach, and it has none of the side effects of all those immuno-suppressants. I want the future of my crohn's control to be a strong immune system, not a weak one. I don't want to add cancer to my list of worries, and you need a strong immune system to fight cancer. SO I'm definitely trying to control my eating habits and envrionment, but I think LDN might be that extra boost we all need.