Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 I thought that I might find an informational FAQ on the LDN yahoo group, but no such luck. As a result, I'd like to ask the LDN-ers in this group for some advice. I appreciate your help. I have been on SCD since May 2007, but last winter I experienced a flare that went from minor to bad -- to the point that I needed prednisone. I fear that I'm in the beginning of a minor flare once more, and want to pre-empt it. I strongly believe that not only diet but stress (and worrying about major chronic health problems, like ulcerative colitis and crohn's disease) contribute to the vicious cycle and spread panic among the nerves of the colon, causing the disease to spread and worsen. 1) I am considering using LDN for ulcerative colitis. I realize that it is not FDA approved for this use, so it will likely be extremely difficult to find a physician in my area who will prescribe it, not to mention get it covered by insurance. I've heard of Skip's Pharmacy and other pharmacists who will fill it over the phone to callers. Can anyone give me specifics on these places and contact info? How much does a typical " prescription " cost out of pocket? Has anyone had any luck in getting insurance to pay for it? 2) What are the long term side effects of taking LDN? I've read about the short term effects -- numerous sleep disturbances and " weird " dreams. Any others? More importantly, does anyone know of the consequences of taking this medication for years? 3) What is the correct dose to begin with? I recall reading that it comes in a pill and cream form. Any difference in the effectiveness of the pill vs. the cream? I am petite and wouldn't want to risk over-medicating myself -- always the fear when you do this without a physician. 4) Does it work for a while, and then stop, like so many other UC drugs? i.e. I understand that it helps your body produce endorphins. After a while, does it lose its effect? Does your body stop producing endorphins, and/or adjust to the medication so that it returns to its pre-LDN state? The studies that have been done recently on LDN were very short term (4 weeks or so). Has anyone followed up with the study patients over months/years? 5) How long does the medication take to take effect? 6) Do you start with a small dose and slowly start increasing it? If so, what dose do you begin with, and by what increments do you increase it? What is the max dose allowed before you risk over-medicating and/or over-dosing? 7) What are the warning flags that you need to reduce your dose or stop taking LDN? 8) How long do you take it before determining that it may not be working? 9) How do you take the medicine, and when? 10) Is it assumed to be a short term drug that you must wean off of in a few years? 11) What are the known drug interactions? I've heard prednisone/steroids and possibly alcohol must not be taken with LDN. What about mesalamine? (e.g. asacol, lialda, rowasa) It's scary to self-medicate without a doctor's guidance, and frankly, I'm not sure that LDN is worth it if the positive results only last for a year or so -- especially without knowing the long term side effects. Thanks for any help you can offer. Jill SCD 5/07 UC 2004 lialda -- and soon to start rowasa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 > I thought that I might find an informational FAQ on the LDN yahoo group, but no such luck. Did you join the group and read the stuff they send and ask questions at that site - all of these questions can be answered there instead of here. > 1) I am considering using LDN for ulcerative colitis. I realize that it is not FDA approved for this use, so it will likely be extremely difficult to find a physician in my area who will prescribe it, not to mention get it covered by insurance. I've heard of Skip's Pharmacy and other pharmacists who will fill it over the phone to callers. No, he'll fill it over the phone **with a prescription**. He won't even fill it over the phone w/out a prescription for my pet. > Can anyone give me specifics on these places and contact info? coastalcompounding.com is the best place to order the cream. Or Skip's Pharmacy - which you can google. > How much does a typical " prescription " cost out of pocket? about a dollar a day or less depending on how much you buy at once and where. much less from alldaychemists - the make your own variety. > Has anyone had any luck in getting insurance to pay for it? didn't ask - heard it wasn't worth it. > > 2) What are the long term side effects of taking LDN? none as far as I know. > I've read about the short term effects -- numerous sleep disturbances and " weird " dreams. Any others? More importantly, does anyone know of the consequences of taking this medication for years? better health? better immune system - perhaps less susceptibility to other big diseases. > > 3) What is the correct dose to begin with? Depends on your weight and what other symptoms/diseases you have and how cautious you want to be to begin with. The good thing about the cream is that you can easily adjust the dosage yourself to begin with. > I recall reading that it comes in a pill and cream form. Any difference in the effectiveness of the pill vs. the cream? I am petite and wouldn't want to risk over-medicating myself -- always the fear when you do this without a physician. also in a tablet you can dissolve in water and give yourself - if you order it from India from alldaychemists without a prescription. > > 4) Does it work for a while, and then stop, like so many other UC drugs? i.e. I understand that it helps your body produce endorphins. After a while, does it lose its effect? why don't you ask this on the LDN list? > Does your body stop producing endorphins, and/or adjust to the medication so that it returns to its pre-LDN state? not that I am aware of. Did you read the info available at the site? > The studies that have been done recently on LDN were very short term (4 weeks or so). Has anyone followed up with the study patients over months/years? > > 5) How long does the medication take to take effect? It starts working immediately, but for full effect, up to 6 months. > > 6) Do you start with a small dose and slowly start increasing it? some do. others don't. since you are obviously worried, it might be best to. > If so, what dose do you begin with, and by what increments do you increase it? depends on your weight - between 3.0 - 4.5 mg. > What is the max dose allowed before you risk over-medicating and/or over-dosing? overdose is such a dramatic term - as it is associated with death and that is not realistic with LDN - over medicate might be a better term. There is some discussion about this - the correct amount to take - like for people with Lyme or MS - before other symptoms come to the fore and become problematic. have not heard of this before with UC/C. > > 7) What are the warning flags that you need to reduce your dose or stop taking LDN? no effect - or if you have chronic Lyme or MS, if you are experiencing some pains associated with those diseases. The MS people take very little. > > 8) How long do you take it before determining that it may not be working? for some people it doesn't work if they have a yeast problem, which must be dealt with first. for others a few months. > > 9) How do you take the medicine, and when? pill or cream between 9:00PM and 3:00AM. > > 10) Is it assumed to be a short term drug that you must wean off of in a few years? that depends on your illness. But there is no weaning, you just stop. > > 11) What are the known drug interactions? I've heard prednisone/steroids 10 mg and above. > and possibly alcohol must not be taken with LDN. you can drink alcohol no problemo, it just may not give you a buzz. > What about mesalamine? (e.g. asacol, lialda, rowasa) no remicade or humira (and possibly MP6) - the others are all fine since they are not immuno suppressants. it's not that the drug interaction is harmful, but ineffective as they serve opposite goals. > > It's scary to self-medicate without a doctor's guidance, and frankly, I'm not sure that LDN is worth it if the positive results only last for a year or so -- especially without knowing the long term side effects. where did you pick that number -it seems totally random. people who have taken it long term have not had side effects as far as I know. And what are the side effects of remicade or rowasa long term or lialda or any of those fun drugs. No doubt, self medicating is daunting but I think it would be less scary if you read the info on the LDN group that they send, and join in the discussion and ask questions there. And spend some time on that board. I lurked for a few months, learning stuff, before I decided to go for it. But at that point, there were far fewer people here discussing it. And part of that was just my own resistance to finding out about a doctor in NYC who would prescribe it and take my insurance - until I got around to querying my doctor only to find out he would prescribe it. I personally have found LDN to be the least scary drug I have ever taken and the one I feel the most positive about. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Excellent responses Mara – thank you! This conversation should go into the LDN file – whoever is working on that, IMO. I wish I had known about LDN years ago! Carol CD 21 yrs SCD 5 yrs B12 shots LDN cream (6 mo.) From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Mara Schiffren > I thought that I might find an informational FAQ on the LDN yahoo group, but no such luck. Did you join the group and read the stuff they send and ask questions at that site - all of these questions can be answered there instead of here. > 1) I am considering using LDN for ulcerative colitis. I realize that it is not FDA approved for this use, so it will likely be extremely difficult to find a physician in my area who will prescribe it, not to mention get it covered by insurance. I've heard of Skip's Pharmacy and other pharmacists who will fill it over the phone to callers. No, he'll fill it over the phone **with a prescription**. He won't even fill it over the phone w/out a prescription for my pet. > Can anyone give me specifics on these places and contact info? coastalcompounding.com is the best place to order the cream. Or Skip's Pharmacy - which you can google. > How much does a typical " prescription " cost out of pocket? about a dollar a day or less depending on how much you buy at once and where. much less from alldaychemists - the make your own variety. > Has anyone had any luck in getting insurance to pay for it? didn't ask - heard it wasn't worth it. > > 2) What are the long term side effects of taking LDN? none as far as I know. > I've read about the short term effects -- numerous sleep disturbances and " weird " dreams. Any others? More importantly, does anyone know of the consequences of taking this medication for years? better health? better immune system - perhaps less susceptibility to other big diseases. > > 3) What is the correct dose to begin with? Depends on your weight and what other symptoms/diseases you have and how cautious you want to be to begin with. The good thing about the cream is that you can easily adjust the dosage yourself to begin with. > I recall reading that it comes in a pill and cream form. Any difference in the effectiveness of the pill vs. the cream? I am petite and wouldn't want to risk over-medicating myself -- always the fear when you do this without a physician. also in a tablet you can dissolve in water and give yourself - if you order it from India from alldaychemists without a prescription. > > 4) Does it work for a while, and then stop, like so many other UC drugs? i.e. I understand that it helps your body produce endorphins. After a while, does it lose its effect? why don't you ask this on the LDN list? > Does your body stop producing endorphins, and/or adjust to the medication so that it returns to its pre-LDN state? not that I am aware of. Did you read the info available at the site? > The studies that have been done recently on LDN were very short term (4 weeks or so). Has anyone followed up with the study patients over months/years? > > 5) How long does the medication take to take effect? It starts working immediately, but for full effect, up to 6 months. > > 6) Do you start with a small dose and slowly start increasing it? some do. others don't. since you are obviously worried, it might be best to. > If so, what dose do you begin with, and by what increments do you increase it? depends on your weight - between 3.0 - 4.5 mg. > What is the max dose allowed before you risk over-medicating and/or over-dosing? overdose is such a dramatic term - as it is associated with death and that is not realistic with LDN - over medicate might be a better term. There is some discussion about this - the correct amount to take - like for people with Lyme or MS - before other symptoms come to the fore and become problematic. have not heard of this before with UC/C. > > 7) What are the warning flags that you need to reduce your dose or stop taking LDN? no effect - or if you have chronic Lyme or MS, if you are experiencing some pains associated with those diseases. The MS people take very little. > > 8) How long do you take it before determining that it may not be working? for some people it doesn't work if they have a yeast problem, which must be dealt with first. for others a few months. > > 9) How do you take the medicine, and when? pill or cream between 9:00PM and 3:00AM. > > 10) Is it assumed to be a short term drug that you must wean off of in a few years? that depends on your illness. But there is no weaning, you just stop. > > 11) What are the known drug interactions? I've heard prednisone/steroids 10 mg and above. > and possibly alcohol must not be taken with LDN. you can drink alcohol no problemo, it just may not give you a buzz. > What about mesalamine? (e.g. asacol, lialda, rowasa) no remicade or humira (and possibly MP6) - the others are all fine since they are not immuno suppressants. it's not that the drug interaction is harmful, but ineffective as they serve opposite goals. > > It's scary to self-medicate without a doctor's guidance, and frankly, I'm not sure that LDN is worth it if the positive results only last for a year or so -- especially without knowing the long term side effects. where did you pick that number -it seems totally random. people who have taken it long term have not had side effects as far as I know. And what are the side effects of remicade or rowasa long term or lialda or any of those fun drugs. No doubt, self medicating is daunting but I think it would be less scary if you read the info on the LDN group that they send, and join in the discussion and ask questions there. And spend some time on that board. I lurked for a few months, learning stuff, before I decided to go for it. But at that point, there were far fewer people here discussing it. And part of that was just my own resistance to finding out about a doctor in NYC who would prescribe it and take my insurance - until I got around to querying my doctor only to find out he would prescribe it. I personally have found LDN to be the least scary drug I have ever taken and the one I feel the most positive about. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Mara, Thanks for the detailed information. I joined the LDN group half a year to a year ago. Unfortunately, I didn't save the messages that they sent. Wish I had. I've already posted questions on the LDN group, too, but appreciate insight provided by others with digestive problems who follow the SCD. If I'm understanding correctly, if you don't have a prescription, it sounds as though the only place you can order either the cream or the capsule is from alldaychemists? What is the recommended dose for the cream? Finally, out of curiosity, did you begin taking it while you were in a flare, or did you wait until the flare had been managed? Thanks, Jill > > > I thought that I might find an informational FAQ on the LDN yahoo group, but no such luck. > > Did you join the group and read the stuff they send and ask questions at that site - all of these questions > can be answered there instead of here. > > > 1) I am considering using LDN for ulcerative colitis. I realize that it is not FDA approved for this use, so it will likely be extremely difficult to find a physician in my area who will prescribe it, not to mention get it covered by insurance. I've heard of Skip's Pharmacy and other pharmacists who will fill it over the phone to callers. > > No, he'll fill it over the phone **with a prescription**. He won't even fill it over the phone w/out a > prescription for my pet. > > > Can anyone give me specifics on these places and contact info? > > coastalcompounding.com is the best place to order the cream. Or Skip's Pharmacy - which > you can google. > > > How much does a typical " prescription " cost out of pocket? > > about a dollar a day or less depending on how much you buy > at once and where. much less from alldaychemists - the make your > own variety. > > > > Has anyone had any luck in getting insurance to pay for it? > > didn't ask - heard it wasn't worth it. > > > > > 2) What are the long term side effects of taking LDN? > > none as far as I know. > > > I've read about the short term effects -- numerous sleep disturbances and " weird " dreams. Any others? More importantly, does anyone know of the consequences of taking this medication for years? > > better health? better immune system - perhaps less susceptibility to other > big diseases. > > > > > 3) What is the correct dose to begin with? > > Depends on your weight and what other symptoms/diseases you have and how cautious you want to be > to begin with. The good thing about the cream is that you can easily adjust the dosage yourself to begin > with. What are the recommended doses with the cream? > > > I recall reading that it comes in a pill and cream form. Any difference in the effectiveness of the pill vs. the cream? I am petite and wouldn't want to risk over-medicating myself -- always the fear when you do this without a physician. > > also in a tablet you can dissolve in water and give yourself - if you order it from India from alldaychemists > without a prescription. > > > > > 4) Does it work for a while, and then stop, like so many other UC drugs? i.e. I understand that it helps your body produce endorphins. After a while, does it lose its effect? > > why don't you ask this on the LDN list? > > > Does your body stop producing endorphins, and/or adjust to the medication so that it returns to its pre-LDN state? > > not that I am aware of. Did you read the info available at the site? > > > The studies that have been done recently on LDN were very short term (4 weeks or so). Has anyone followed up with the study patients over months/years? > > > > 5) How long does the medication take to take effect? > > It starts working immediately, but for full effect, up to 6 months. > > > > > 6) Do you start with a small dose and slowly start increasing it? > > some do. others don't. since you are obviously worried, it might be best to. > > > If so, what dose do you begin with, and by what increments do you increase it? > > depends on your weight - between 3.0 - 4.5 mg. > > > > What is the max dose allowed before you risk over-medicating and/or over-dosing? > > overdose is such a dramatic term - as it is associated with death and that is not > realistic with LDN - over medicate might be a better term. There is some discussion > about this - the correct amount to take - like for people with Lyme or MS - before > other symptoms come to the fore and become problematic. have not heard of > this before with UC/C. > > > > > 7) What are the warning flags that you need to reduce your dose or stop taking LDN? > > no effect - or if you have chronic Lyme or MS, if you are experiencing some pains > associated with those diseases. The MS people take very little. > > > > > > 8) How long do you take it before determining that it may not be working? > > for some people it doesn't work if they have a yeast problem, which > must be dealt with first. for others a few months. > > > > > 9) How do you take the medicine, and when? > > pill or cream between 9:00PM and 3:00AM. > > > > > 10) Is it assumed to be a short term drug that you must wean off of in a few years? > > that depends on your illness. But there is no weaning, you just stop. > > > > > 11) What are the known drug interactions? I've heard prednisone/steroids > > > 10 mg and above. > > > > and possibly alcohol must not be taken with LDN. > > you can drink alcohol no problemo, it just may not give you a buzz. > > > > What about mesalamine? (e.g. asacol, lialda, rowasa) > > no remicade or humira (and possibly MP6) - the others are all fine > since they are not immuno suppressants. it's not that the > drug interaction is harmful, but ineffective as they serve opposite > goals. > > > > > It's scary to self-medicate without a doctor's guidance, and frankly, I'm not sure that LDN is worth it if the positive results only last for a year or so -- especially without knowing the long term side effects. > > where did you pick that number -it seems totally random. > people who have taken it long term have not had side effects > as far as I know. And what are the side effects of remicade or > rowasa long term or lialda or any of those fun drugs. > > > No doubt, self medicating is daunting but I think it would > be less scary if you read the info on the LDN group that they > send, and join in the discussion and ask questions there. And > spend some time on that board. I lurked for a few months, > learning stuff, before I decided to go for it. But at that point, > there were far fewer people here discussing it. And part of that > was just my own resistance to finding out about a doctor in NYC > who would prescribe it and take my insurance - until I > got around to querying my doctor only to find out he would > prescribe it. > > I personally have found LDN to be the least scary drug I have > ever taken and the one I feel the most positive about. > > Mara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 > Mara, > > Thanks for the detailed information. I joined the LDN group half a year to a year ago. Unfortunately, I didn't save the messages that they sent. Ask someone to resend the list of doctors who work with LDN. Maybe there will be someone in your area. > Wish I had. I've already posted questions on the LDN group, too, but appreciate insight provided by others with digestive problems who follow the SCD. > > If I'm understanding correctly, if you don't have a prescription, it sounds as though the only place you can order either the cream or the capsule is from alldaychemists? What is the recommended dose for the cream? depends on your weight and sensitivity. 105 and below 3.0. between 105 and 125 - between 3.0 and 4.5. 125 and above, 4.5. no one ever goes higher than 4.5 because it becomes less effective no matter your weight. > > Finally, out of curiosity, did you begin taking it while you were in a flare, or did you wait until the flare had been managed? well, I definitely was not in a peak - I was having issues - can't remember if I still was in a flare or was coming round but infinitesimally slowly. Here's another LDN board with informative Q and As. Mara > > Thanks, > Jill > > > > > >> >>> I thought that I might find an informational FAQ on the LDN yahoo group, but no such luck. >> >> Did you join the group and read the stuff they send and ask questions at that site - all of these questions >> can be answered there instead of here. > > > >> >>> 1) I am considering using LDN for ulcerative colitis. I realize that it is not FDA approved for this use, so it will likely be extremely difficult to find a physician in my area who will prescribe it, not to mention get it covered by insurance. I've heard of Skip's Pharmacy and other pharmacists who will fill it over the phone to callers. >> >> No, he'll fill it over the phone **with a prescription**. He won't even fill it over the phone w/out a >> prescription for my pet. >> >>> Can anyone give me specifics on these places and contact info? >> >> coastalcompounding.com is the best place to order the cream. Or Skip's Pharmacy - which >> you can google. > > > >> >>> How much does a typical " prescription " cost out of pocket? >> >> about a dollar a day or less depending on how much you buy >> at once and where. much less from alldaychemists - the make your >> own variety. >> >> >>> Has anyone had any luck in getting insurance to pay for it? >> >> didn't ask - heard it wasn't worth it. >> >>> >>> 2) What are the long term side effects of taking LDN? >> >> none as far as I know. >> >>> I've read about the short term effects -- numerous sleep disturbances and " weird " dreams. Any others? More importantly, does anyone know of the consequences of taking this medication for years? >> >> better health? better immune system - perhaps less susceptibility to other >> big diseases. >> >>> >>> 3) What is the correct dose to begin with? >> >> Depends on your weight and what other symptoms/diseases you have and how cautious you want to be >> to begin with. The good thing about the cream is that you can easily adjust the dosage yourself to begin >> with. > > What are the recommended doses with the cream? > >> >>> I recall reading that it comes in a pill and cream form. Any difference in the effectiveness of the pill vs. the cream? I am petite and wouldn't want to risk over-medicating myself -- always the fear when you do this without a physician. >> >> also in a tablet you can dissolve in water and give yourself - if you order it from India from alldaychemists >> without a prescription. >> >>> >>> 4) Does it work for a while, and then stop, like so many other UC drugs? i.e. I understand that it helps your body produce endorphins. After a while, does it lose its effect? >> >> why don't you ask this on the LDN list? >> >>> Does your body stop producing endorphins, and/or adjust to the medication so that it returns to its pre-LDN state? >> >> not that I am aware of. Did you read the info available at the site? >> >>> The studies that have been done recently on LDN were very short term (4 weeks or so). Has anyone followed up with the study patients over months/years? >>> >>> 5) How long does the medication take to take effect? >> >> It starts working immediately, but for full effect, up to 6 months. >> >>> >>> 6) Do you start with a small dose and slowly start increasing it? >> >> some do. others don't. since you are obviously worried, it might be best to. >> >>> If so, what dose do you begin with, and by what increments do you increase it? >> >> depends on your weight - between 3.0 - 4.5 mg. >> >> >>> What is the max dose allowed before you risk over-medicating and/or over-dosing? >> >> overdose is such a dramatic term - as it is associated with death and that is not >> realistic with LDN - over medicate might be a better term. There is some discussion >> about this - the correct amount to take - like for people with Lyme or MS - before >> other symptoms come to the fore and become problematic. have not heard of >> this before with UC/C. >> >>> >>> 7) What are the warning flags that you need to reduce your dose or stop taking LDN? >> >> no effect - or if you have chronic Lyme or MS, if you are experiencing some pains >> associated with those diseases. The MS people take very little. >> >> >>> >>> 8) How long do you take it before determining that it may not be working? >> >> for some people it doesn't work if they have a yeast problem, which >> must be dealt with first. for others a few months. >> >>> >>> 9) How do you take the medicine, and when? >> >> pill or cream between 9:00PM and 3:00AM. >> >>> >>> 10) Is it assumed to be a short term drug that you must wean off of in a few years? >> >> that depends on your illness. But there is no weaning, you just stop. >> >>> >>> 11) What are the known drug interactions? I've heard prednisone/steroids >> >> >> 10 mg and above. >> >> >>> and possibly alcohol must not be taken with LDN. >> >> you can drink alcohol no problemo, it just may not give you a buzz. >> >> >>> What about mesalamine? (e.g. asacol, lialda, rowasa) >> >> no remicade or humira (and possibly MP6) - the others are all fine >> since they are not immuno suppressants. it's not that the >> drug interaction is harmful, but ineffective as they serve opposite >> goals. >> >>> >>> It's scary to self-medicate without a doctor's guidance, and frankly, I'm not sure that LDN is worth it if the positive results only last for a year or so -- especially without knowing the long term side effects. >> >> where did you pick that number -it seems totally random. >> people who have taken it long term have not had side effects >> as far as I know. And what are the side effects of remicade or >> rowasa long term or lialda or any of those fun drugs. >> >> >> No doubt, self medicating is daunting but I think it would >> be less scary if you read the info on the LDN group that they >> send, and join in the discussion and ask questions there. And >> spend some time on that board. I lurked for a few months, >> learning stuff, before I decided to go for it. But at that point, >> there were far fewer people here discussing it. And part of that >> was just my own resistance to finding out about a doctor in NYC >> who would prescribe it and take my insurance - until I >> got around to querying my doctor only to find out he would >> prescribe it. >> >> I personally have found LDN to be the least scary drug I have >> ever taken and the one I feel the most positive about. >> >> Mara >> > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Jill, I weigh about 120. I started with 1.5, then 3.0, then 4.5. At 4.5 I had difficulty sleeping. I went down to 3.6 and I'm sleeping much better. It's trial and error, but many start low and build up the dose. PJ > >> > >>> I thought that I might find an informational FAQ on the LDN yahoo group, but no such luck. > >> > >> Did you join the group and read the stuff they send and ask questions at that site - all of these questions > >> can be answered there instead of here. > > > > > > > >> > >>> 1) I am considering using LDN for ulcerative colitis. I realize that it is not FDA approved for this use, so it will likely be extremely difficult to find a physician in my area who will prescribe it, not to mention get it covered by insurance. I've heard of Skip's Pharmacy and other pharmacists who will fill it over the phone to callers. > >> > >> No, he'll fill it over the phone **with a prescription**. He won't even fill it over the phone w/out a > >> prescription for my pet. > >> > >>> Can anyone give me specifics on these places and contact info? > >> > >> coastalcompounding.com is the best place to order the cream. Or Skip's Pharmacy - which > >> you can google. > > > > > > > >> > >>> How much does a typical " prescription " cost out of pocket? > >> > >> about a dollar a day or less depending on how much you buy > >> at once and where. much less from alldaychemists - the make your > >> own variety. > >> > >> > >>> Has anyone had any luck in getting insurance to pay for it? > >> > >> didn't ask - heard it wasn't worth it. > >> > >>> > >>> 2) What are the long term side effects of taking LDN? > >> > >> none as far as I know. > >> > >>> I've read about the short term effects -- numerous sleep disturbances and " weird " dreams. Any others? More importantly, does anyone know of the consequences of taking this medication for years? > >> > >> better health? better immune system - perhaps less susceptibility to other > >> big diseases. > >> > >>> > >>> 3) What is the correct dose to begin with? > >> > >> Depends on your weight and what other symptoms/diseases you have and how cautious you want to be > >> to begin with. The good thing about the cream is that you can easily adjust the dosage yourself to begin > >> with. > > > > What are the recommended doses with the cream? > > > >> > >>> I recall reading that it comes in a pill and cream form. Any difference in the effectiveness of the pill vs. the cream? I am petite and wouldn't want to risk over-medicating myself -- always the fear when you do this without a physician. > >> > >> also in a tablet you can dissolve in water and give yourself - if you order it from India from alldaychemists > >> without a prescription. > >> > >>> > >>> 4) Does it work for a while, and then stop, like so many other UC drugs? i.e. I understand that it helps your body produce endorphins. After a while, does it lose its effect? > >> > >> why don't you ask this on the LDN list? > >> > >>> Does your body stop producing endorphins, and/or adjust to the medication so that it returns to its pre-LDN state? > >> > >> not that I am aware of. Did you read the info available at the site? > >> > >>> The studies that have been done recently on LDN were very short term (4 weeks or so). Has anyone followed up with the study patients over months/years? > >>> > >>> 5) How long does the medication take to take effect? > >> > >> It starts working immediately, but for full effect, up to 6 months. > >> > >>> > >>> 6) Do you start with a small dose and slowly start increasing it? > >> > >> some do. others don't. since you are obviously worried, it might be best to. > >> > >>> If so, what dose do you begin with, and by what increments do you increase it? > >> > >> depends on your weight - between 3.0 - 4.5 mg. > >> > >> > >>> What is the max dose allowed before you risk over-medicating and/or over-dosing? > >> > >> overdose is such a dramatic term - as it is associated with death and that is not > >> realistic with LDN - over medicate might be a better term. There is some discussion > >> about this - the correct amount to take - like for people with Lyme or MS - before > >> other symptoms come to the fore and become problematic. have not heard of > >> this before with UC/C. > >> > >>> > >>> 7) What are the warning flags that you need to reduce your dose or stop taking LDN? > >> > >> no effect - or if you have chronic Lyme or MS, if you are experiencing some pains > >> associated with those diseases. The MS people take very little. > >> > >> > >>> > >>> 8) How long do you take it before determining that it may not be working? > >> > >> for some people it doesn't work if they have a yeast problem, which > >> must be dealt with first. for others a few months. > >> > >>> > >>> 9) How do you take the medicine, and when? > >> > >> pill or cream between 9:00PM and 3:00AM. > >> > >>> > >>> 10) Is it assumed to be a short term drug that you must wean off of in a few years? > >> > >> that depends on your illness. But there is no weaning, you just stop. > >> > >>> > >>> 11) What are the known drug interactions? I've heard prednisone/steroids > >> > >> > >> 10 mg and above. > >> > >> > >>> and possibly alcohol must not be taken with LDN. > >> > >> you can drink alcohol no problemo, it just may not give you a buzz. > >> > >> > >>> What about mesalamine? (e.g. asacol, lialda, rowasa) > >> > >> no remicade or humira (and possibly MP6) - the others are all fine > >> since they are not immuno suppressants. it's not that the > >> drug interaction is harmful, but ineffective as they serve opposite > >> goals. > >> > >>> > >>> It's scary to self-medicate without a doctor's guidance, and frankly, I'm not sure that LDN is worth it if the positive results only last for a year or so -- especially without knowing the long term side effects. > >> > >> where did you pick that number -it seems totally random. > >> people who have taken it long term have not had side effects > >> as far as I know. And what are the side effects of remicade or > >> rowasa long term or lialda or any of those fun drugs. > >> > >> > >> No doubt, self medicating is daunting but I think it would > >> be less scary if you read the info on the LDN group that they > >> send, and join in the discussion and ask questions there. And > >> spend some time on that board. I lurked for a few months, > >> learning stuff, before I decided to go for it. But at that point, > >> there were far fewer people here discussing it. And part of that > >> was just my own resistance to finding out about a doctor in NYC > >> who would prescribe it and take my insurance - until I > >> got around to querying my doctor only to find out he would > >> prescribe it. > >> > >> I personally have found LDN to be the least scary drug I have > >> ever taken and the one I feel the most positive about. > >> > >> Mara > >> > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 The basic formula to figure LDN dosage: Your weight in pounds x ..03 = # mg. LDN. Btw, I do not think you can order the LDN cream from AllDayChemist.com I think they only deal in the 50 mg. Naltrexone tablets (Revia, etc.) that you then must dissolve in distilled water & keep in the fridge. Carol From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008 Jill, I weigh about 120. I started with 1.5, then 3.0, then 4.5. At 4.5 I had difficulty sleeping. I went down to 3.6 and I'm sleeping much better. _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Thanks, Carol. Do you use the cream or take the pill? Or do you make your own solution? For SCDers who take LDN (for whom it is prescribed), where do you get the pill compounded to ensure that it does not contain illegals? And what instructions do you give the pharmacist to use for fillers? Thanks, Jill > > The basic formula to figure LDN dosage: Your weight in pounds x .03 = # mg. > LDN. > > Btw, I do not think you can order the LDN cream from AllDayChemist.com I > think they only deal in the 50 mg. Naltrexone tablets (Revia, etc.) that you > then must dissolve in distilled water & keep in the fridge. > > Carol > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of smdsmom2008 > > Jill, > I weigh about 120. I started with 1.5, then 3.0, then 4.5. At 4.5 I had > difficulty sleeping. I went down to 3.6 and I'm sleeping much better. > > > > > _,_._,___ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi Jill http://www.lowdosenaltrexone.org/ Use skips pharmacy because he is the number one pharmacist for LDN. The filler you want is acidophilus. http://skipspharmacy.com/ Join this group. It is a much smaller group than the other one. Your questions will not get lost. Crystal who is the owner of the list has a list of doctors. Dr skip also comes on sometimes. http://health.groups.yahoo.com/group/LDN_Users/ People have been taking low dose naltrexone since 1980 and there has been no long term side effects. Here are some radio blogs from she talks to a range of doctors and advocates of LDN. http://www.blogtalkradio.com/mary-boyle-bradley Sky To: BTVC-SCD Sent: Fri, 15 January, 2010 12:12:57 PMSubject: Re: OT: Considering LDN Thanks, Carol.Do you use the cream or take the pill? Or do you make your own solution?For SCDers who take LDN (for whom it is prescribed), where do you get the pill compounded to ensure that it does not contain illegals? And what instructions do you give the pharmacist to use for fillers?Thanks,Jill>> The basic formula to figure LDN dosage: Your weight in pounds x .03 = # mg.> LDN. > > Btw, I do not think you can order the LDN cream from AllDayChemist. com I> think they only deal in the 50 mg. Naltrexone tablets (Revia, etc.) that you> then must dissolve in distilled water & keep in the fridge.> > Carol> > > > From: BTVC-SCD@yahoogroup s.com [mailto:BTVC-SCD@yahoogroup s.com] On Behalf> Of smdsmom2008> > Jill,> I weigh about 120. I started with 1.5, then 3.0, then 4.5. At 4.5 I had> difficulty sleeping. I went down to 3.6 and I'm sleeping much better.> > > > > _,_._,___> See what's on at the movies in your area. Find out now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 > Hi Jill>> http://www.lowdosenaltrexone.org/>> Use skips pharmacy because he is the number one pharmacist for LDN. The > filler you want is acidophilus.> http://skipspharmacy.com/Skip's is very reputable but doesn't offer acidophilus as a filler. That's what they told me on two different occasions. Irmat Pharmacy is a good source for LDN using acidophilus as a filler (in NYC, but they mail everywhere at good prices).Also, Skip's does use a red dye in their LDN/filler. It's a vegetable dye so not a problem for most people, but a minority of people may react to it. M.> Join this group. It is a much smaller group than the other one. Your > questions will not get lost. Crystal who is the owner of the list has a > list of doctors. Dr skip also comes on sometimes.> http://health.groups.yahoo.com/group/LDN_Users/>> People have been taking low dose naltrexone since 1980 and there has > been no long term side effects.>> Here are some radio blogs from she talks to a range of doctors and > advocates of LDN. > http://www.blogtalkradio.com/mary-boyle-bradley>> Sky>>>>> ________________________________> > To: BTVC-SCD > Sent: Fri, 15 January, 2010 12:12:57 PM> Subject: Re: OT: Considering LDN>> > Thanks, Carol.>> Do you use the cream or take the pill? Or do you make your own solution?>> For SCDers who take LDN (for whom it is prescribed), where do you get > the pill compounded to ensure that it does not contain illegals? And > what instructions do you give the pharmacist to use for fillers?>> Thanks,> Jill>> >>>> The basic formula to figure LDN dosage: Your weight in pounds x .03 = # >> mg.>> LDN.>>>> Btw, I do not think you can order the LDN cream from AllDayChemist. com >> I>> think they only deal in the 50 mg. Naltrexone tablets (Revia, etc.) >> that you>> then must dissolve in distilled water & keep in the fridge.>>>> Carol>>>>>>>> From: BTVC-SCD@yahoogroup s.com [mailto:BTVC-SCD@yahoogroup s.com] On >> Behalf>> Of smdsmom2008>>>> Jill,>> I weigh about 120. I started with 1.5, then 3.0, then 4.5. At 4.5 I had>> difficulty sleeping. I went down to 3.6 and I'm sleeping much better.>>>>>>>>>> _,_._,___>>>>>>>> __________________________________________________________________________________> See what's on at the movies in your area. Find out now: > http://au.movies.yahoo.com/session-times/-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 I use the cream (gel) that I order from CoastalCompounding.com It costs about $25.00/month, if you order 3 months at a time. My script reads Naltrexone HCL 6MG/ML Gel and comes in pre-filled syringes. I chose the cream because of absorption issues that I may still have. The transdermal cream of course bypasses the gut. Fillers for LDN capsules can be anything like Avicel (microcrystalline cellulose), acidophilus (not needing refrigeration) or calcium carbonate (not recommended). I know that SkipsPharmacy has been recommended as a source. I believe he gives out the formula to any pharmacist who requests it – I know Coastal Compounding does. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of jillhcaugherty Do you use the cream or take the pill? Or do you make your own solution? For SCDers who take LDN (for whom it is prescribed), where do you get the pill compounded to ensure that it does not contain illegals? And what instructions do you give the pharmacist to use for fillers? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Skip's is very reputable but doesn't offer acidophilus as a filler. That's what they told me on two different occasions. Irmat Pharmacy is a good source for LDN using acidophilus as a filler (in NYC, but they mail everywhere at good prices). Also, Skip's does use a red dye in their LDN/filler. It's a vegetable dye so not a problem for most people, but a minority of people may react to it. I got my 1.0mg LDN from my local compounding pharmacy, but they won't make 0.5 so I got it from Skip's. They do have a red dye in it, but it's cranberry. I think that's OK, but these also came in gel caps that have a red-dye half! They did give me the phone number for the company that makes the colored gel caps, but they never answered the phone and after a few days I gave up trying to find out just which red dye it is. I am using them because I cannot seem to transfer reliably to a clear capsule, even doing it over waxed paper to catch spills, but I think it is giving me a mild rash on my hands from that red-whatever. If I reorder that size I think I will be able to get them in clear capsules, and they do offer fish gelatin for people who can't handle regular gelatin. The filler I have is Avicel, the cellulose type, but that's what I want anyway. Skip's are very very helpful but do make your requirements known up front. I guess I am so used to my two local compounding pharmacies having my allergies and quirks on file that I just forgot to check. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Thanks, . At one point I had thought that cellulose (e.g. Avacel) was considered an illegal? I must have been mistaken. Is there any reason why you use the pill instead of the cream? I'm trying to understand the benefits of each. It sounds as though the cream would avoid any potential gut issues. On the other hand, I don't know whether it's as effective as the pill. Thanks, Jill > > > Skip's is very reputable but doesn't offer acidophilus as a filler. That's > what they told me on two different occasions. Irmat Pharmacy is a good > source for LDN using acidophilus as a filler (in NYC, but they mail > everywhere at good prices). > Also, Skip's does use a red dye in their LDN/filler. It's a vegetable dye > so not a problem for most people, but a minority of people may react to it. > > I got my 1.0mg LDN from my local compounding pharmacy, but they won't > make 0.5 so I got it from Skip's. They do have a red dye in it, but > it's cranberry. I think that's OK, but these also came in gel caps > that have a red-dye half! They did give me the phone number for the > company that makes the colored gel caps, but they never answered the > phone and after a few days I gave up trying to find out just which > red dye it is. I am using them because I cannot seem to transfer > reliably to a clear capsule, even doing it over waxed paper to catch > spills, but I think it is giving me a mild rash on my hands from that > red-whatever. If I reorder that size I think I will be able to get > them in clear capsules, and they do offer fish gelatin for people who > can't handle regular gelatin. The filler I have is Avicel, the > cellulose type, but that's what I want anyway. Skip's are very very > helpful but do make your requirements known up front. I guess I am so > used to my two local compounding pharmacies having my allergies and > quirks on file that I just forgot to check. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Thanks, Sky! > > > > The basic formula to figure LDN dosage: Your weight in pounds x .03 = # mg. > > LDN. > > > > Btw, I do not think you can order the LDN cream from AllDayChemist. com I > > think they only deal in the 50 mg. Naltrexone tablets (Revia, etc.) that you > > then must dissolve in distilled water & keep in the fridge. > > > > Carol > > > > > > > > From: BTVC-SCD@yahoogroup s.com [mailto:BTVC-SCD@yahoogroup s.com] On Behalf > > Of smdsmom2008 > > > > Jill, > > I weigh about 120. I started with 1.5, then 3.0, then 4.5. At 4.5 I had > > difficulty sleeping. I went down to 3.6 and I'm sleeping much better. > > > > > > > > > > _,_._,___ > > > > > > > > ________________________________________________________________________________\ __ > See what's on at the movies in your area. Find out now: http://au.movies.yahoo.com/session-times/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Hi Jill and everyone, I thought I would take this opportunity of introducing myself. I suffer from Ulcerative Colitis and have done for 23 years. I live in the UK and take LDN in liquid form from Dicksons Chemist in Glasgow. I know this is different to the liquid LDN people are taking in the USA. I started out in pill form (from Irmat’s pharmacy) through Dr Bob Lawrence here in the UK who introduced LDN into the UK in the year 2000. At one time it was thought there were going to be difficulties importing capsules into the UK so I switched to liquid form and at first I found I did have those wonderful vivid dreams back from switching but they didn’t last for long (sadly). I have been taking LDN for 14 months and thought I’d share my experience with you. I started off on 3mg and after 2 weeks was advised to go to 4.5mg but as I have some neurological problems, I found this difficult to cope with so reduced my dose to 3mg and I find this works wonderfully for me. The blood and embarrassing moments you have with UC disappeared within 4 weeks of my taking LDN and it took about 3 months in total for the bloatedness and pain to disappear. Not an overnight success but then nothing ever is, especially with this condition. I’ve noticed there’s lots of discussions on the SCD – Dr Bob Lawrence is my LDN Guru and his business is Dietary Research Ltd and strongly believes that our poor diets are the reasons for various autoimmune illnesses and follows this quite strongly. Both Dr Skip in the USA and Dickson from Dicksons Chemist has offered their support to LDNNow. We are in the process of updating our website but if anyone has any questions re LDN, you can contact Dr Skip from Skips pharmacy by emailing him at askdoctorskip@... (he supplies LDN for about 25,000 LDN users). Dickson’s Chemist is the recommended pharmacist in the UK and if you email at homedeliverypharmacy@... and please ensure your put FAO in the subject line. I’ve just seen something on acidophilus and strongly recommend everyone suffering from any IBD issues take this probiotic. It restores the natural gut flora which can be overrun by candida if you have taken too many antibiotics in your life time. Just thought I’d throw that in there. Lastly, can I ask for any support to our petition for LDN to be made available which is being presented to the European Parliament? Anyone in the world can sign as it is a human rights issue. This has been up for over a week now and already got over 800 signatures so any help you can give in supporting this petition would be greatly appreciated. The link is http://www.ipetitions.com/petition/ldnnow/ .. After signing you will be taken to a donate page, please ignore this as we do not want your money/funding, just your support and signature. Also, if you have 5 mins, please do watch Dr Steele MBE (UK’s TV Celebrity Dr) talk support LDN – link below my signature. Many thanks and good to be here. Best, Jayne Crocker www.LDNNow.com Important! Please support our LDN petition to the European Parliament by signing here http://www.ipetitions.com/petition/ldnnow/ tel: +44 (0) 7877 492 669 Dr Steele MBE, UK's Celebrity TV Dr supporting LDN LDNNow, a patient and friend led organisation (so not a charity) with no funding and no affiliation to any company or organisation, but rather a group of concerned individuals focussed on improving the health of those who suffer from the many diseases and conditions that LDN treats. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of jillhcaugherty Sent: 16 January 2010 18:46 To: BTVC-SCD Subject: Re: OT: Considering LDN Thanks, . At one point I had thought that cellulose (e.g. Avacel) was considered an illegal? I must have been mistaken. Is there any reason why you use the pill instead of the cream? I'm trying to understand the benefits of each. It sounds as though the cream would avoid any potential gut issues. On the other hand, I don't know whether it's as effective as the pill. Thanks, Jill > > > Skip's is very reputable but doesn't offer acidophilus as a filler. That's > what they told me on two different occasions. Irmat Pharmacy is a good > source for LDN using acidophilus as a filler (in NYC, but they mail > everywhere at good prices). > Also, Skip's does use a red dye in their LDN/filler. It's a vegetable dye > so not a problem for most people, but a minority of people may react to it. > > I got my 1.0mg LDN from my local compounding pharmacy, but they won't > make 0.5 so I got it from Skip's. They do have a red dye in it, but > it's cranberry. I think that's OK, but these also came in gel caps > that have a red-dye half! They did give me the phone number for the > company that makes the colored gel caps, but they never answered the > phone and after a few days I gave up trying to find out just which > red dye it is. I am using them because I cannot seem to transfer > reliably to a clear capsule, even doing it over waxed paper to catch > spills, but I think it is giving me a mild rash on my hands from that > red-whatever. If I reorder that size I think I will be able to get > them in clear capsules, and they do offer fish gelatin for people who > can't handle regular gelatin. The filler I have is Avicel, the > cellulose type, but that's what I want anyway. Skip's are very very > helpful but do make your requirements known up front. I guess I am so > used to my two local compounding pharmacies having my allergies and > quirks on file that I just forgot to check. > > > Quote Link to comment Share on other sites More sharing options...
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