Attempt to taper FAILED

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Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/3/2009 7:27 PM (GMT -7)   
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.
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 11/3/2009 7:40 PM (GMT -7)   
I had trouble on pred tapers probably half the time. Usually from 20 to 10mg, so I just went up to 20mg for another week or 10 days and tried it again. Usually went smoothly the second go-around.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/3/2009 7:48 PM (GMT -7)   
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
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/3/2009 9:15 PM (GMT -7)   
Carnival Huck, are you familiar with the yahoo group(s) for LDN users? If you decide to go that route, you might want to join for extra help with questions like steroids and LDN. I thought I had recently heard that a very low dosage of steroids with LDN was now thought to be okay, but do not quote me on that! Also, LDN is thought to work best when candida is first eliminated. The SCD *should* help do that for you...

Also, as PV mentioned, you might try a few weeks of an elemental or semi-elemental diet. My son did it for 10 days once and had very good success. I'm told it usually takes longer, though.

Do you take any probiotics or consume any fermented foods? I don't see it in your sig. Perhaps a good probiotic would help.
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/3/2009 9:43 PM (GMT -7)   
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.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/3/2009 10:21 PM (GMT -7)   
I am willing to try new things such as the elemental diet and LDN. I am trying to avoid 6MP or Methotrexate as long as possible. There are also some SCD-legal probiotics and vitamins. I have recently been avoiding my vitamins because of the SCD ... I don't know whether or not they might contain starch and I've been eating so healthy on the SCD ... so I'm waiting for my SCD-legal vitamins to arrive. This is probably not the smartest move on my part. Also, much to my horror, the OSCAL I was taking (the doctor recommended calcium) contains CORN SYRUP solids, which makes me feel sick just thinking about it! I mean, why on earth does calcium need to contain corn syrup??? My Vitamin D (Kirkland brand) also contains Soybean Oil which is not allowed on the SCD either. *GROAN*
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 11/3/2009 10:48 PM (GMT -7)   
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.

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 11/4/2009 12:35 AM (GMT -7)   
Could you taper more slowly?
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help, especially the youngsters.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/4/2009 8:50 AM (GMT -7)   
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).

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/4/2009 8:53 AM (GMT -7)   
Dang, sorry to hear about the relapse. Yes, it is important to read ingredients on the label for every supplement and medication. It's not easy to get rid of all the crap. 
 
In clinical trials, patients were accepted who were on Entocort ONLY if they had been stable, at a consistent dosage of not more than 3 mg, for some time. The higher the Entocort dosage, the more likely it is that it will conflict with LDN. So if you are upping the dose right now, and in transition from a flare to stability, it might not be a good time to introduce LDN. 
 
How long were you on Entocort at 9 mg? My daughter landed in the hospital, years ago, when she tried to taper off Entocort too soon. Even though she had been on 9mg for 4 weeks, 6 mg for 2 wks, 3 mg for 4 wks, she flared when she tried taking 3 mg every other day - it happened on the third of her "off" days.
 
I tend to favor the FDA-approved guideline of, at a minimum, 9 mg at up to 8 wks to induce remission, and then 6 mg for another 3 months to maintain it.
 
 

aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 11/4/2009 10:02 AM (GMT -7)   
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...
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.

Post Edited (aoccc) : 11/4/2009 10:05:14 AM (GMT-7)


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 11/4/2009 11:53 AM (GMT -7)   
Try tapering more slowly by skipping 1 capsule every now and then, then every other day, then every 2nd day, etc.
I was doing good tapering off Entocort then Imuran while starting LDN. Then 60 days later all hell broke loose and I got postier scleritis of the eye. Now 3 years later I am still paying for it by taking Imuran, Entocort, Prednisone, and Humira. I'm now pretty much blind in that eye with double vision problems. I can drive now but not well at night.
I'm not a LDN lover!
Dave D
Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/4/2009 6:14 PM (GMT -7)   
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.
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/4/2009 9:13 PM (GMT -7)   
Since you've done SCD before, then theoretically you killed off the weakest bacteria, leaving the stronger ones to reproduce when you went off SCD. Perhaps that's why you're having a harder time this round?
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/5/2009 9:46 PM (GMT -7)   
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!
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries

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