Attempt to taper FAILED

My doctor and I attempted to taper my steroids (entocort) from 9mg to 6mg.  I felt fine for the first few days and then the pain came roaring back and kept me up all night last night! Today I went immediately back up to 9mg and had nothing but the SCD introductory homemade chicken broth to eat + water and weak tea with honey to drink so now the pain has subsided.  What do you think makes sense as a good next move?  I was thinking LDN, however, I am concerned because I thought that LDN requires that you stop all steroids 1 month prior to ramping up on it.  I'm not sure how I would make it through the 1-month transition period in lieu of my failed taper.  My weight is still pretty healthy (5'10", 170 lbs) but I don't want it to go much lower if possible.  I have tried imuran, pentasa, and asacol in the past without much luck.  Remicade worked, but my doctor warned that rapid healing could cause my stricture to close up.

What about 6-mp or methotrexate? I know 6-mp is very similar to Imuran, so maybe you're better off giving methotrexate a chance. Maybe you can try the taper again after giving methotrexate some time to take effect.

What about an elemental diet? I've heard it can be as effective as steroids in inducing remission (moreso in children, but I think it does work in adults too). Perhaps you can read Jini Patel's book and see if it is something you want to try. I do think that her formulation of Absorb Plus is better than some of the others out there.

I'm sorry SCD alone isn't doing enough to wean you off the steroids. I'd give methotrexate a try and then in a few months try to wean off the entocort again. Also, I've read some animal studies (not clinical studies, and certainly not proven) that Bee Propolis can help with healing inflammation, almost as well as Asacol. Give it a read and see if you think that's something that can help. My husband is now taking it because I read about it and thought it couldn't hurt with it's anti-parasitic, anti-viral, anti-inflammatory and antibiotic properties.

PV

Foodwise, I'd stay away from all raw foods and nut flour baked goods. Maybe if you eat soft easy to digest foods for a month or two, it will give your guts a chance to heal enough for another taper.

LDNwise, I believe you can be taking 10mg of prednisone when you start it.

The question is what does the LDN do to get back to normal homeostasis. If the endorphins (out of control immune) and somehow opioid problem(a result of a specific abnormal amino acid digestion? Genetic recognition etc. result in high cytokines) are in high(er) levels in crohns…. We have that LDN will, at least, be a placeholder in the opioid receptor spot and perhaps not initiate any biological response (as a sort of silent antagonist) and in doing so, we hope to give the body some time to lower the endorphins on its own. Taken at night, a site suggests then, that beta endorphins increase in production, so since the beta endorphins are ‘good’, this would have a secondary benefit: the newly generated beta endorphins during rest could then substitute the spot where the LDN has occupied for the short time…this eludes to also correcting the problem.

We have this point of reference as where the crohns problem area is located i.e. flawed or extensive TLR9 signaling for pro-inflammatory and cytokines increase. Such response of TLR9 suggests the intracellar space has been exposed to “pathogen” for it to react. Continued cytokine increase suggests continuing exposure but it is not clear if the trigger is an actual pathogen or if is this is a flaw in NOD2, the short name for the area of binding.

The possible correction requires a look at why A2A has been slow to counteract the inflammation, that correction involves adenosine.

I'd suggest enteral nutrition (elemental diet is one form of enteral nutrition, there are also semi-elemental and polymeric diets, and all these forms of enteral nutrition work equally well). There are studies showing that people who are steroid-dependent (can't get off steroids without flaring) can use enteral nutrition (full liquid diet) to stay in full remission while they are tapering off the steroids. Generally you would stick with the enteral nutrition for another week or two after you were totally off steroids to make sure you were in full remission. Then you could continue enteral nutrition as a dietary supplement to help maintain remission or choose a different maintenance drug.

You'll find that enteral nutrition formulas contain ingredients that are not approved on the specific carbohydrate diet, but since they are highly effective at inducing remission, as shown by randomized, controlled clinical studies (remission rates generally range from 50% to 80%), I'd say that it is not meaningful to apply the SCD rules to them. Just make sure if you are using an enteral nutrition product for exclusive use (full liquid diet) that you choose a product that supplies complete nutrition (Absorb Plus, for instance, does not contain iron, an essential nutrient, and doesn't contain fat, also essential, so that has to be added).

Don't play around with SCD when you are tapering or moving around meds. When you get stable again, then try. The intro diet usually makes things look worse before better so if you are weaning at the same time can't be fun...

Dave -- I'm really sorry to hear what happened with your eye :-( Have you tried SCD? It is another hit or miss type of thing, but you can do it in such a way (low residue foods to start out) that you don't put yourself in danger.

aoccc -- I have had a difficult time with flare ups this time around. I was on the SCD before and it immediately controlled my flares -- even when I did not follow it 100%. This time around I am doing strict, finatical SCD and still need the full dose (9mg) of Entocort to keep from flaring.

njmom -- I've been at 9mg for 8 weeks. I am going to try again when things settle down. I've found from past experience that if I can get down to 6mg, that going to 3 and then completely off it is easy. It's the 9-to-6 step that gets me every time!

Writer -- I will reserve enteral nutrition if nothing can get me off the steroids and onto LDN. I don't want to give up on the SCD because it has worked so well for me in the past.

Yes, I have done SCD on many occasions. Each time I screw it up and then go back on it, it takes a bit longer for it to work the next time around. Last time, it took 3 weeks for my symptoms to disappear and for me to get off all steroids. This time, I am at the 3 month mark and still having occasional symptoms and obviously not able to get off the steroids. I think part of the problem is also stress. Way too much going on with work and I am taking classes on evenings and weekends. Still, this time I am determined to maintain my illegal food "sobriety" for 5-10 years from the time my symptoms disappear!