Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Alyssa, I started with the cream because it is easy to adjust the dose- and started with 1.5 mg. I am so excited for you and the rest of us in NC. With Duke on board, it opens the door for the possibility that other NC physicians will consider it. You are a pioneere, and a very special young lady. PJ > > I just got back from my Duke appointment, and I LOVE my GI doctor!! My > parents and I sent her many emails saying that we REALLY wanted to try > LDN, and she said that she thinks it's reasonable to let us try it for > about 3 months before we try anything else (remicade). So, we have her > blessing for the LDN, though she doesn't feel comfortable prescribing > it. So, now all we need to do is find a doctor to prescribe it! > > What's the deal with prednisone and LDN? Do I have to be at/below a > certain dose of pred, or completely off of it before I start LDN? > Also, do you guys think I should get the capsules or cream? Dose? > Start at maybe 3 mg and at some point increase to 4.5? And what > exactly should I tell the compounding place? Any advice is > appreciated!! I'M SO EXCITED!! > > Cheers! > Alyssa 16 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Prednisone 10 mg 1x per day (trying to wean!!!!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 If I stick to this diet do you think I will be well to travel oversees in November? Alyssa,I started with the cream because it is easy to adjust the dose- and started with 1.5 mg.I am so excited for you and the rest of us in NC. With Duke on board, it opens the door for the possibility that other NC physicians will consider it.You are a pioneere, and a very special young lady. PJ>> I just got back from my Duke appointment, and I LOVE my GI doctor!! My > parents and I sent her many emails saying that we REALLY wanted to try > LDN, and she said that she thinks it's reasonable to let us try it for > about 3 months before we try anything else (remicade). So, we have her > blessing for the LDN, though she doesn't feel comfortable prescribing > it. So, now all we need to do is find a doctor to prescribe it!> > What's the deal with prednisone and LDN? Do I have to be at/below a > certain dose of pred, or completely off of it before I start LDN? > Also, do you guys think I should get the capsules or cream? Dose? > Start at maybe 3 mg and at some point increase to 4.5? And what > exactly should I tell the compounding place? Any advice is > appreciated!! I'M SO EXCITED!!> > Cheers!> Alyssa 16 yo> UC April 2008, dx Sept 2008> SCD June 2009 (restarted)> Prednisone 10 mg 1x per day (trying to wean!!!!)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 That’s great news Alyssa! I use the cream from CoastalCompounding.com They are the originators of the LDN cream made with emu oil (for fast absorption). They will give the recipe to any compounding pharmacy that asks, but I just order from them. It costs me about $60, includes shipping, for 3 months. The prescription reads: Naltrexone HCL 6 MG/ML Gel. I started with 1.5mg for a week, then increased to 3 mg, which is my dose, being about 105 lbs. Dosage = your weight in pounds x .03 = mg of LDN. If you can’t find a doc to prescribe, email Crystal at angelindisguiseldn@... and tell her your city. She keeps a list of prescribing docs. Prednisone 10 mg or less is ok with LDN (if I recall correctly). Carol CD 22 yrs SCD 5 yrs LDN 1 yr From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Alyssa Luck What's the deal with prednisone and LDN? Do I have to be at/below a certain dose of pred, or completely off of it before I start LDN? Also, do you guys think I should get the capsules or cream? Dose? Start at maybe 3 mg and at some point increase to 4.5? And what exactly should I tell the compounding place? Any advice is appreciated!! I'M SO EXCITED!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 I started with the cream, too - I think that is the best way to start, because it is the best way to adjust your dose. Also, if your weight currently is still around or below 100 - than 3 mg is your max dose. So, if you want to start lower, you should start at 1.5, IMO. You need to be at 10 or lower mg (or whatever the unit is) of prednisone and hopefully weaning. Mara > Alyssa, > I started with the cream because it is easy to adjust the dose- and started with 1.5 mg. > > I am so excited for you and the rest of us in NC. With Duke on board, it opens the door for the possibility that other NC physicians will consider it. > > You are a pioneere, and a very special young lady. > PJ > >> >> I just got back from my Duke appointment, and I LOVE my GI doctor!! My >> parents and I sent her many emails saying that we REALLY wanted to try >> LDN, and she said that she thinks it's reasonable to let us try it for >> about 3 months before we try anything else (remicade). So, we have her >> blessing for the LDN, though she doesn't feel comfortable prescribing >> it. So, now all we need to do is find a doctor to prescribe it! >> >> What's the deal with prednisone and LDN? Do I have to be at/below a >> certain dose of pred, or completely off of it before I start LDN? >> Also, do you guys think I should get the capsules or cream? Dose? >> Start at maybe 3 mg and at some point increase to 4.5? And what >> exactly should I tell the compounding place? Any advice is >> appreciated!! I'M SO EXCITED!! >> >> Cheers! >> Alyssa 16 yo >> UC April 2008, dx Sept 2008 >> SCD June 2009 (restarted) >> Prednisone 10 mg 1x per day (trying to wean!!!!) >> > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 That’s great news Alyssa! Wow Carol, thanks for all the great info! That's exactly what I needed =) Mara and PJ, thank you too! Should I just give the phone number of coastal compounding to my local compounder so they can get the recipe? Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 This is great info Carol! I am taking notes for the miraculous day when my prednisone is low enough that I can try this! I was wondering, if the LDN is mixed into a cream, how do you know how much you are getting? And what part of your body do you put the cream on? -Joanna I started with 1.5mg for a week, then increased > to 3 mg, which is my dose, being about 105 lbs. Dosage = your weight inpounds x .03 = mg of LDN. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 I would just get it from coastal - less room for error - they make it all the time.MaraThat’s great news Alyssa! Wow Carol, thanks for all the great info! That's exactly what I needed =) Mara and PJ, thank you too! Should I just give the phone number of coastal compounding to my local compounder so they can get the recipe?Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 I think they can do that, or you can let them do it. I use them too because I know they do a lot of it. If you get 3 months at a time, the shipping is not much extra. It takes about 2 days in the mail after I call them, so I do this early in the week to avoid a weekend delay. I started at 1.5 mg and then went to 3mg after a month. PJ In BTVC-SCD , Alyssa Luck wrote: > > > That's great news Alyssa! > > > Wow Carol, thanks for all the great info! That's exactly what I needed > =) Mara and PJ, thank you too! Should I just give the phone number of > coastal compounding to my local compounder so they can get the recipe? > > Cheers! > Alyssa 16 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Prednisone 10 mg 1x per day (trying to wean!!!!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 Naltrexone HCL 6 MG/ML Gel. I started with 1.5mg for a week, then increased to 3 mg, which is my dose, being about 105 lbs. Dosage = your weight in pounds x .03 = mg of LDN.Hey Carol, if it's 6 mg/ml, what do you use to measure out 1/2 and 1/4 of a ml? Does it come with something, or did you get a separate little squirt thing? Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 The LDN cream comes in (needleless) graduated syringes. Each contains 6 ml (equals 6 mg) worth of LDN cream. I use ½ ml per dose which equals 3 mg. So, ¼ ml will equal 1.5 mg LDN. The LDN cream is white so it’s easy to see in the syringe to dose. LDN cream is applied to the inner wrist or some other hairless part of your body. I usually apply it to my wrist. And yes, just have your local compounding pharmacy call Coastal Compounding for the recipe if you decide to “go local”. Carol CD 22 yrs SCD 5 yrs LDN 1 yr From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Alyssa Luck Naltrexone HCL 6 MG/ML Gel. I started with 1.5mg for a week, then increased to 3 mg, which is my dose, being about 105 lbs. Dosage = your weight in pounds x .03 = mg of LDN. Hey Carol, if it's 6 mg/ml, what do you use to measure out 1/2 and 1/4 of a ml? Does it come with something, or did you get a separate little squirt thing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 Joanna, The LDN cream is a homogeneous mixture and I assume the LDN s equally distributed throughout. It comes in graduated (needleless) syringes. It is applied to the inner wrist or other hairless part of your body, like behind the knee. I get my LDN cream from CoastalCompounding.com. They are the originators of the LDN in emu oil cream. Carol CD 22 yrs SCD 5 yrs LDN 1 yr From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Joanna This is great info Carol! I am taking notes for the miraculous day when my prednisone is low enough that I can try this! I was wondering, if the LDN is mixed into a cream, how do you know how much you are getting? And what part of your body do you put the cream on? -Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 Oh, I see now. Thanks Carol! Can't wait to try it one day. -Joanna > > Joanna, > > The LDN cream is a homogeneous mixture and I assume the LDN s equally > distributed throughout. It comes in graduated (needleless) syringes. It is > applied to the inner wrist or other hairless part of your body, like behind > the knee. I get my LDN cream from CoastalCompounding.com. They are the > originators of the LDN in emu oil cream. > > Carol > > CD 22 yrs SCD 5 yrs LDN 1 yr > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of Joanna > > This is great info Carol! I am taking notes for the miraculous day when my > prednisone is low enough that I can try this! I was wondering, if the LDN is > mixed into a cream, how do you know how much you are getting? And what part > of your body do you put the cream on? > -Joanna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 At 04:34 PM 8/17/2010, Alyssa wrote: What's the deal with prednisone and LDN? Do I have to be at/below a certain dose of pred, or completely off of it before I start LDN? Also, do you guys think I should get the capsules or cream? Dose? Start at maybe 3 mg and at some point increase to 4.5? And what exactly should I tell the compounding place? Any advice is appreciated!! I'M SO EXCITED!! I'm not sure about the prednisone levels. angelindisguiseldn@... or angelindisguise67@... is the email of the lady who keeps a list of LDN-prescribing doctors. Skip's Pharmacy is one of the best places to get LDN. http://www.skipspharmacy.com/home.php 21000 Boca Rio Rd Suite A-29 Boca Raton, Florida 33433 Fax: Skip of Skip's Pharmacy in is concerned that people will have too vivid dreams if they start out on 4.5mg and discontinue due to that. So he recommends the following RX: 1.5 mg po X 30 days, (po= by mouth) 3.0 mg po X 30 days , then 4.5 po thereafter with PRN in the refill space. The shipping is approx $5 no matter how many months supply you get. I get 3 months of 4.5mg w/ shipping for approx $60. My insurance isn't paying for this, since the prescriber in question is out of system, and it would be more hassle than it's worth to try to get the prescription approved. I did ask my PCP, but she knew nothing about LDN and was reluctant to prescribe it. The rheumatologist I saw over the pain issues basically said, " Take Tylenol. And lose weight. " Yeah, he was no skinny minnie, himself! I initially ordered one month of 1.5, one month of 3.0 and one month of 4.5. I took 1.5 mg for one week with no problem, increased to 3.0 mg for one week with no problem and then took the 1.5 with the 3.0 for the rest of the month, and then ordered an additional 3 months of 4.5 which I am currently taking. You, or your PCP. if s/he is willing to prescribe it, can fax the Rx to Skip's, include your tel. # and they will call you to discuss what and how much you want and arrange payment and shipping, etc. They are helpful and flexible ( some of the techs are not the brightest lightbulbs, but that's OK). Some people start the 4.5 cold turkey and have no problems -- everyone is different, you know your own body. And frankly, since sleep issues are a problem for me with my apnea, I decided to start low and slow -- if I'd had any trouble with the 1.5, or with either of the increases, I could have dropped back to the lower dose for a longer time. As it happened, my system really liked the LDN. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 At 05:43 PM 8/17/2010, you wrote: If I stick to this diet do you think I will be well to travel oversees in November? I started SCD in November of 2001 and in April of 2002, I traveled to the UK and Ireland. But everyone is different. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
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