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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Appointment with Dr. Jill Smith - What should I ask?


05-20-2015, 11:05 AM   #1
LaurenB89
 
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Appointment with Dr. Jill Smith - What should I ask?

Well, I finally said enough is enough. My current doctor was very good about communicating with me (usually replying to an email within 30 minutes) when I was getting prepped for Humira and asking questions. Now that I have asked about going on LDN, I have not heard from her in 24 hours.

So.... I called and made an appointment with Dr. Smith at Georgetown University Hospital. They have three gastroenterologists there who are currently prescribing LDN treatment, according to a nurse I spoke to. I am very new to this but am so eager to try this medicine. What questions should I ask her when I go? I wonder if I am too advanced with the fistula for LDN to have a chance to work.
05-20-2015, 11:52 PM   #2
Clash
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I'm going to tag jmrogers4 as her son was on LDN. For those that have seen some efficacy with LDN they have stated it is a long slow process. I think with jmrogers4 it took 8 months or longer. That could be a concern with a fistula and something you should discuss with the GI.
05-21-2015, 08:52 AM   #3
LaurenB89
 
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That's what I was thinking too. I'm not totally against Humira; it works for a lot of people, and I am planning on monotherapy, which to me appears pretty safe. My thoughts are to go on Humira, heal this thing up, get in remission, get the okay from docs to try for baby, stop biologics in third trimester (at suggestion of Mayo Clinic), and if I am still in remission after baby go on LDN as maintenance.

Wow that was a lot.
05-21-2015, 11:25 AM   #4
Jmrogers4
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Yes it took a long time to work so it's best to start from a good spot. We started from a fairly good spot and it got worse before it got better so it would be better to have a bridge if you can to get you through the beginning (at least 3-4 months) that is when things started to improve but it was a slow process. My son had started on July 1 and it was a rough summer but about the middle of September things started to improve at about Christmas time he was really feeling well. In February he had scopes which showed healthy tissue and his weight started to improve a little and he grew an inch (we also added supplemental nutrition through pediasure peptide drinks which I think made a huge difference). He came down with C-diff in July and it through him into a bad flare which we tried to fight through and pull him out off with EEN and a prednisone burst but by December, he was still having issues and we couldn't wait any longer so moved on to remicade which has kept him in remission even through a MRSA infection and having to take the super duper antibiotics to combat that.
so I would definitely ask about bridge treatments or what you can do until LDN really starts to kick.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-30-2015, 05:57 AM   #5
LodgeLady
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I am new to LDN ( only been on it 5 weeks) and it has changed my life!! Started at 1.5mg and noticed a difference after 1 week. I just upped my dose to 2 mg and think this may be my therapeutic dose. So no it does not have to take a long time to work. Everyone is different. Keep us posted.
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