I've been going to post for a while now about my new endeavor of using LDN to taper off Entocort but thought I should wait to see if it was an immediate failure, or not, before I did. So far so good though.
Over Christmas I gained about 9 pounds (!) , partially I 'm sure due to the delicous GF fruitcake and other goodies I made and consumed aplenty over the holidays, but also I think because my gut has healed to the point that I'm getting most of the nutrition out of the food I eat now. It could also have been due to thateffect of the Entocort for some people. Anyhow, I debated whether or not I should stay on the Entocort for six months or follow the usual GI recommendation of tapering off after three. Because my doctor knows nothing about this disease or how to treat it, I am on my own, and have to tell you it is so useful to me to read what all of you write about your doctors' recommendations. Sometimes it is all the medical advice I have!
So anyway, when I contemplated how I was going to taper off the entocort I remembered my experience with Low Dose Naltrexone and how it helped me, but not enough. I started wondering if I can go back on the LDN while tapering of the Entocort, as a kind of back up. I did a little research and emailed a pharmacist, Skip at Skip's pharmacy in the US , who is considered somewhat of an expert on LDN on the Multiple Sclerosis sites, to ask if he knew if I could use the two drugs simutaneously without an interaction. He told me to find a study done by a researcher named Jill Smith, whom he thought had had patients on both drugs. I did find her research and yes , indeed, that's eactly what she had them do, with good results. I also found other info on LDN, that I had not seen before, where a doctor stated that LDN was never meant to be a stand-alone treatment for GI issues, but was meant to be used in conjunction with other treatments.
So... I have taken a small dose ( 1.5 mg) of LDN each night since the 7th of Jan., and also started to taper the Entocort . I have only been taking 1 Entocort pill a day for the last 3 months, and so I dropped down to 1 every second day, along with the LDN. I have noticed that I am no longer as "impervious" as I was on one Entocort a day... ie if I eat an "iffy" item, previously I would not even have noticed any effect. Now things get a little wobblier ( softer) but I have only had a bit of D one morning. I think it is the well cooked vegetables (that I have so freely and gratefully been eating over the last three months) that are causing the most challenge. Still, I am loathe to give them up, if just a little softening is the only consequence because I am sure I need the nutrients, and I missed veggies so much. I have, though, been very strict about the eggs whites, gluten, and (of course) casein, my arch enemy.
Incidently, while on the Entocort I discovered that corn no longer seems to bother me, and I have been using some of the flours, like sorghum, that I had previously stopped using, without any trouble. Those little things make life so much easier, like being able to put an egg yolk in baking instead of egg replacments, and to be able to use those good flour blends instead of just basically rice and millet flour.
All in all I am doing well these days, but am just taking one day at a time. If I encounter any difficulty with this tapering off, I won't hesitate to go back to one Entocort a day for longer.
Warm regards,
Linda
Tapering off Entocort using LDN
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Linda in BC
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Tapering off Entocort using LDN
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Linda,
Thanks so much for the progress report. That kind of information is so valuable for many of us here.
And thanks for the insight on using LDN - that's very valuable information to have available.
I hope that everything continues to go as planned,
Tex
Thanks so much for the progress report. That kind of information is so valuable for many of us here.
And thanks for the insight on using LDN - that's very valuable information to have available.
I hope that everything continues to go as planned,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
It is very valuable information - thanks for sharing. I have considered trying LDN for quite awhile for fibromyalgia. I know the fibro might improve since I've made dietary changes, but LDN might be useful in the future, depending on how things go. I don't feel that I need it for LC - at least not right now, thankfully. But the time might come when I want to try it so maybe I could kill two birds with one stone.
Sure glad it's helping you!
Sure glad it's helping you!
Robbie
Linda,
What prompted you to start taking LDN in the first place? Not to pry, but I googled it and it appears to be used for those who have an alcohol or opioid dependance. I am just asking because I am contemplating trying it and trying to learn how to get it prescribed.
Rich
What prompted you to start taking LDN in the first place? Not to pry, but I googled it and it appears to be used for those who have an alcohol or opioid dependance. I am just asking because I am contemplating trying it and trying to learn how to get it prescribed.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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Foxnhound8
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TooManyHats
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I found this while googling LDN:hoosier1 wrote:Linda,
What prompted you to start taking LDN in the first place? Not to pry, but I googled it and it appears to be used for those who have an alcohol or opioid dependance. I am just asking because I am contemplating trying it and trying to learn how to get it prescribed.
Rich
Asperger's syndrome (AS) is a high functioning form of autism. I'm pretty sure there's nothing they won't try, but I can see why it would work in autism if it works on opioid centers of the brain. What does concern me is the compounding necessary to get the correct dosage of this medication as the FDA hasn't approved capsules less than 50 mg each. (BTW, there are LOADS of medications that work for mediating the symptoms of autism--to a degree, but have never done double blind studies and had them published. So the fact that it says there is no evidence that such low doses have any effect on AS wouldn't surprise me)Naltrexone (Revia). This medication, which is sometimes used to help alcoholics stop drinking, may help reduce some of the repetitive behaviors associated with Asperger's syndrome. However, the use of low-dose naltrexone — in doses as low as two to four mg a day — has been gaining favor recently. But, there's no good evidence that such low doses have any effect on Asperger's syndrome.
This medication has a long list of "off-label" uses, Crohn's and ulcerative colitis among them as it's believed to work on the body's immune system response.
Arlene
Progress, not perfection.
Progress, not perfection.
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Linda in BC
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Hi Everyone:
Sorry it's taken me a while to respond... I have not had time to check the board for a week or more. I am just swamped with work. In response to your question, Rich, as to why I started using this.. I found out about it on a Crohn's website, as supposedly being a treatment for many autoimmune diseases but there is also a lot of info on it on sites for people with Multiple Sclerosis. As Arlene said, LDN has a long list of "off-label" uses. Yes, it was originally developed for treating alcoholism, and was prescribed in 50 mg doses for that. (ughh!! that seems so high.. i can't imagine how those people felt on it! even a small dose makes me very sleepy) The "Low dose " part of Low Dose Naltrexone (LDN) treatment refers to the fact that it is used in much smaller doses, from 1.5 mg to 4.5 mg, to treat a number of things among which are GI conditions. The variance in the dosage is due to the fact that you should start at a very low dosage low (at 1.5 mg) and build up to the 4.5 very slowly, and many people find they never do get up to the full 4.5 mg dose. It can interfere with sleep when you first start taking it, and also every time you increase the dosage, if you go up too fast. But oddly enough, after a couple of times at a particular dose, once you are used to it, you actually sleep like a baby.. very, very well. And, something I also really like is that it alleviates restless leg syndrome and leg cramps for me.
They are not 100% sure of why it works for these diseases but they do know that it increases the production of serotonin by blocking opioid receptors for 3 hours after you take it. Once that blocking is done, the body tries to compensate for the lack of serotonin by increasing production. Supposedly that increased serotonin has a beneficial effect on our immune system, and helps to alleviate symptoms of some autoimmune disorders. Confusing I know , because one theory says autoimmune disorders are caused by an overactive immune system, and it is counter intuitive to think that a strengthened system would reduce symptoms but for some people it really does. I think it is simply that they don't actually know what is going on in the autoimmune-type diseases, nor do they actually know how LDN helps.
As far as the compounding goes, it is not really that hard. You can actually get it compounded at certain pharmacies in both the US and Canada, but it is much cheaper to do it yourself, and I do. I just bought distilled water, went to Walmart and got a little red plastic medicine bottle with millilitres marked on the side, and an eye dropper or medicine spoon with Mls. on it too. I take 25 mililitres of water, put it in the bottle, take 1/2 of a 50 mg LDN pill, add the pill to the water and shake it well until the pill is dissolved. Then, come dosage time, I measure out how much I am taking with the eye dropper. It must be kept cool and dark, so I keep it in the fridge, and they suggest you only mix 25 mgs at a time as opposed to 50 ( the whole pill) because it does lose it's potency after a while, and it would take too long to go through 50 mls at 1.5 to 2.5 ml/night. Most people take it just before going to bed.
It's effect is subtle as far as the MC goes, meaning I was not able to reach remission entirely by just using the LDN, tho I think one could in conjuction with diet. At the time I was trying it last summer, I had not figured out all of my food intolerances, so although I had a couple of "norman " days with it, most were not. Now that I know what foods not to eat, I am pretty confident that as I taper off the Entocort, the LDN will "protect" me, giving my system that extra boost to ensure no huge reaction if I do goof up on my food. But I guess it remains to be seen if I am right!
It has been 3 weeks now of 1 entocort every two days, and I have seen very little degeneration in my normans. Next week I am going to drop down to 1 every third day.
wil keep you posted.
Linda
.
Sorry it's taken me a while to respond... I have not had time to check the board for a week or more. I am just swamped with work. In response to your question, Rich, as to why I started using this.. I found out about it on a Crohn's website, as supposedly being a treatment for many autoimmune diseases but there is also a lot of info on it on sites for people with Multiple Sclerosis. As Arlene said, LDN has a long list of "off-label" uses. Yes, it was originally developed for treating alcoholism, and was prescribed in 50 mg doses for that. (ughh!! that seems so high.. i can't imagine how those people felt on it! even a small dose makes me very sleepy) The "Low dose " part of Low Dose Naltrexone (LDN) treatment refers to the fact that it is used in much smaller doses, from 1.5 mg to 4.5 mg, to treat a number of things among which are GI conditions. The variance in the dosage is due to the fact that you should start at a very low dosage low (at 1.5 mg) and build up to the 4.5 very slowly, and many people find they never do get up to the full 4.5 mg dose. It can interfere with sleep when you first start taking it, and also every time you increase the dosage, if you go up too fast. But oddly enough, after a couple of times at a particular dose, once you are used to it, you actually sleep like a baby.. very, very well. And, something I also really like is that it alleviates restless leg syndrome and leg cramps for me.
They are not 100% sure of why it works for these diseases but they do know that it increases the production of serotonin by blocking opioid receptors for 3 hours after you take it. Once that blocking is done, the body tries to compensate for the lack of serotonin by increasing production. Supposedly that increased serotonin has a beneficial effect on our immune system, and helps to alleviate symptoms of some autoimmune disorders. Confusing I know , because one theory says autoimmune disorders are caused by an overactive immune system, and it is counter intuitive to think that a strengthened system would reduce symptoms but for some people it really does. I think it is simply that they don't actually know what is going on in the autoimmune-type diseases, nor do they actually know how LDN helps.
As far as the compounding goes, it is not really that hard. You can actually get it compounded at certain pharmacies in both the US and Canada, but it is much cheaper to do it yourself, and I do. I just bought distilled water, went to Walmart and got a little red plastic medicine bottle with millilitres marked on the side, and an eye dropper or medicine spoon with Mls. on it too. I take 25 mililitres of water, put it in the bottle, take 1/2 of a 50 mg LDN pill, add the pill to the water and shake it well until the pill is dissolved. Then, come dosage time, I measure out how much I am taking with the eye dropper. It must be kept cool and dark, so I keep it in the fridge, and they suggest you only mix 25 mgs at a time as opposed to 50 ( the whole pill) because it does lose it's potency after a while, and it would take too long to go through 50 mls at 1.5 to 2.5 ml/night. Most people take it just before going to bed.
It's effect is subtle as far as the MC goes, meaning I was not able to reach remission entirely by just using the LDN, tho I think one could in conjuction with diet. At the time I was trying it last summer, I had not figured out all of my food intolerances, so although I had a couple of "norman " days with it, most were not. Now that I know what foods not to eat, I am pretty confident that as I taper off the Entocort, the LDN will "protect" me, giving my system that extra boost to ensure no huge reaction if I do goof up on my food. But I guess it remains to be seen if I am right!
It has been 3 weeks now of 1 entocort every two days, and I have seen very little degeneration in my normans. Next week I am going to drop down to 1 every third day.
wil keep you posted.
Linda
.
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Rich,
Some people refer to the sequence of events that Linda described, (quoted below), as "resetting", or even "reprogramming" the immune system, on a daily basis, (during the night), though I feel that the term "reprogramming" is a bit of an overstatement. Some view it as "rebooting" the immune system each night.
Some people refer to the sequence of events that Linda described, (quoted below), as "resetting", or even "reprogramming" the immune system, on a daily basis, (during the night), though I feel that the term "reprogramming" is a bit of an overstatement. Some view it as "rebooting" the immune system each night.
TexLinda wrote:it increases the production of serotonin by blocking opioid receptors for 3 hours after you take it. Once that blocking is done, the body tries to compensate for the lack of serotonin by increasing production. Supposedly that increased serotonin has a beneficial effect on our immune system, and helps to alleviate symptoms of some autoimmune disorders.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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TooManyHats
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Is that like tricking it into behaving? LOL!tex wrote:Rich,
Some people refer to the sequence of events that Linda described, (quoted below), as "resetting", or even "reprogramming" the immune system, on a daily basis, (during the night), though I feel that the term "reprogramming" is a bit of an overstatement. Some view it as "rebooting" the immune system each night.
TexLinda wrote:it increases the production of serotonin by blocking opioid receptors for 3 hours after you take it. Once that blocking is done, the body tries to compensate for the lack of serotonin by increasing production. Supposedly that increased serotonin has a beneficial effect on our immune system, and helps to alleviate symptoms of some autoimmune disorders.
Arlene
Progress, not perfection.
Progress, not perfection.
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Linda in BC
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Linda and Tex,
Very interesting... So as to avoid introducing too many variables at once, I am going to keep this regimen on the back burner for now but will be sure to deploy it in the future if I deem it necessary.
So how do I ask my dr. to prescribe such a drug? I feel like I am pushing my welcome as it is.
Also, if LDN is increasing serotonin to some level, then why not find an anti-depresant that stimulates serotonin? Or is the trick finding an anti-depressant that doesn't cause or flare MC?
Rich
Very interesting... So as to avoid introducing too many variables at once, I am going to keep this regimen on the back burner for now but will be sure to deploy it in the future if I deem it necessary.
So how do I ask my dr. to prescribe such a drug? I feel like I am pushing my welcome as it is.
Also, if LDN is increasing serotonin to some level, then why not find an anti-depresant that stimulates serotonin? Or is the trick finding an anti-depressant that doesn't cause or flare MC?
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
I have a hunch that blocking the opioid receptors for several hours may be a vital part of the process, also. But who knows? 
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Linda in BC
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update on tapering with LDN
Rich, that is an interesting question about why not just use anti-depressants, and I agree with Tex that it might be the 3 hour blocking and subsequent natural enhancement of production of serotonin that makes it a different effect. There are entire NGO's with lots of info on how it works ( www.lowdosenaltrexone.org , or www.ldn.org,) if you want to read more about it. They are also dedicated to getting the word about LDN out as a script that has few side effects and are trying to change the fact that no drug companies will produce the low -dose version of it because there is no money in it for them.
A week ago I started taking only one Entocort every third day and so far things are still Normal. I know there is kind of an 8 week wall when the effects of reduced ( or stopping ) entocort can finally show up, so am not counting myself out of the woods yet. But I am optimistic. We are going on a trip to Coeur D'Laine, Idaho this weekend and I'm sure hoping nothing untoward shows up while I'm away!
Linda
A week ago I started taking only one Entocort every third day and so far things are still Normal. I know there is kind of an 8 week wall when the effects of reduced ( or stopping ) entocort can finally show up, so am not counting myself out of the woods yet. But I am optimistic. We are going on a trip to Coeur D'Laine, Idaho this weekend and I'm sure hoping nothing untoward shows up while I'm away!
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
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Linda in BC
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a little update on my progress with tapering
I went away for the weekend and was due to take my one Entocort on Day 3 which was Sunday, but I forgot. I was doing so well, that I thought I am just going to wait another day, and so I am now on a "one entocort every 4 days" schedule ( along with 1.75 mg of LDN nightly) and still getting perfect normans!
Linda
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
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MaggieRedwings
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