Re: Thanks for the responses (re: New to the Group)

[Guest guest]

Calypso,I think you are correct about the quick taper. The body just can't adjust like that. Usually my husband does a 40 mg taper over 8 weeks! If they do a shorter taper (about 6 weeks), it is still much longer than what your son was doing. If your husband never did it, your son should stay on the steroids at full dose for 1 week, then drop by 5 mg each week thereafter. If you want a shorter taper, you drop by 5mg every 5 days instead of 7 days/week. If one takes prednisone/steroids orally, it can be done for up to 1 week without tapering, so I have been told (by my husband's doctor, and I myself did this many years ago). After that point, you are basically shutting down the body's own cortisol production. I have read that it takes just as long

after stopping oral steroids for the body to clear it out of the system and return to full functioning as one was one the oral steroids. Another thought is that you might see about taking bio-identical cortisol instead of the synthetic prednisone. It is supposedly easier to clear the system, works better, and doesn't run as big of a risk of eventually destroying the body's ability to make it itself. I'll bet a good compounding pharmacy could help you with information so you could request a script from the doctor for it.AmeliaHusband UC 9 years, SCD 19 monthsLDN 3 mgFrom: Calypso

Harmon To: BTVC-SCD Sent: Sat, February 6, 2010 1:47:47 AMSubject: Thanks for the responses (re: New to the Group)

Thanks for all the responses to my post.

I really appreciate 's advice about doctors. (Thanks for taking the time to post when you were feeling so bad.)

Amelia,

It makes more sense to me to try to taper off the steriods a second time before adding 6MP- he has only been under their care for under two months. If we hold off on the 6MP, and the tapering off of steriods doesn't work, then he would end up being on steriods longer, but I think it is worth a try. I haven't much experience, but it seemed that they tapered fast to me- he was on 9 days at 30mg, 7 days at 21mg, 4 days at 15mg, then he started having symptoms again, so they brought him back up. Currently he is taking 39 mg. I know this is a forum for discussing/support around the diet, and my questions are about medicines, but I appreciate the more wholistic perspective here.

As for LDN, it makes a lot more sense to me to support the immune system (so it can function properly), instead of trying to wipe it out. I saw there is an open clinical trial studing the effects of LDN for kids with Crohn's. http://clinicaltrials.gov/ct2/show/NCT00715117?term=LDN & rank=2

Thanks again for the responses. I've been spending a LOT of time reading the posts from this group, but it has really helped me to feel less alone. Thanks

Calypso

> It sounds like your son is responding to the medication now, which is good. Also, even though it is easier to take by opening the capsules, isn't that also basically doing away with the time release benefit of the capsule?

Inside the capsule are little grainuals that realse the medicine inside them when at a specific pH