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As some of you may remember, I am tapering off entocort using LDN. I took my last Entocort pill 8 days ago, (after being on only one every 4 days for a month or more) and I am sad to report that there has been a steady deterioration in my beautiful Normans.
Also, this time taking LDN is different than when I took it last summer. It is not giving me the lovely peaceful sleep it did before. In fact quite the opposite. I am having a lot of trouble getting to sleep, and have not been able to raise the dose beyond the "entry level" 1.5 mg. (I got up to 3 mg last summer) because of the sleep disruptions. It is supposed to subside after a few days to a week, but has not this time. I may discontinue it or try taking it earlier in the evening, not just right before bed. I really don't know if it's helping or not, but I didn't take it one night about two weeks ago and had somewhat D. the next morning. Coincidence? I think not. So I have been hesitant to stop now when things are already not looking good.
I am probably eventually going to resume taking the Entocort, trying 1 every 4 days again, but am still looking at my diet to see if something in it could be triggering this. I had found that, on the Entocort, I could eat certain flours like sorghum and quinoa which I could not eat before the Entocort, and I bought some bulk Bob's Red Mills biscuit mix recently that I suspect has these in it ( no ingredients were on the label.) I am hoping this may be the problem.
I'll keep you all posted.
Fond regards,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
So sorry to hear you're having a small setback. I'm sure you'll figure it out and get back on track, and having to resume taking some entocort if need be, is certainly a good option. Hopefully, you'll quickly figure out what's in your diet that's causing it. The biscuits sound like a possible culprit.
When I'm having disappointing setbacks, I tell myself that since I went untreated for so many years, eating so many wrong things, it simply has to take time for the gut to get back to some kind of normalcy. You've come a long way in a relatively short amount of time, so don't get too discouraged. I'm sure the next report from you will be positive.
Love and ,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I agree with Kari - you may just need some more healing time before completely discontinuing the Entocort. And it's certainly possible, (maybe likely?), that some minor food sensitivity, (or two), could also be the problem.
You may find that it's necessary to increase the Entocort dose to more than you were taking just before you discontinued taking it, because you may have accrued some intestinal damage since then. At any rate, if the problem doesn't resolve immediately, it's usually best to treat it aggressively, in order to prevent the damage from escalating. At least you're not back into an all-out flare.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
That sucks. Just wanted to commiserate and to remind you that Norman will return. It's no fun at all being on the down side of the MC roller coaster. Thinking of you and sending big hugs.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Linda,
I'm so sorry to read that you've had a setback. I can certainly sympathize with you. I agree with the others that you might have to initially increase your Entocort dosage, but you should be able to reduce it quickly.
I hope you can determine what might be the problem and get back on track quickly.
Good luck!
Gloria
You never know what you can do until you have to do it.
Hi Linda, I understand your discouragement, but I know you're on the right path. I have to agree with Tex that you probably just need to be on entocort longer. The second time I was on it, I decided to throw out all time tables and just listen to my body and adjust things accordingly. It's a delicate balance to try to figure things out, but not to overly fixate on things to the point that it is emotionally detrimental. I think I put a lot of pressure on myself to get off entocort the first time around. In the beginning, I think you have to be somewhat obsessive about what's affecting you and using the right meds, but later on when you feel like you're on the right track, I think it's better to exercise a lot of patience, tweak things as you go, and get your mind off from it as much as possible. I know that's easier said than done, but I think having a more relaxed, accepting attitude contributed to my healing. You probably don't need that advice because you seem to handle mc with a very balanced, healthy attitude and you've sought out other treatments that might help. The second time around on entocort, I was much more relaxed and was able to ride out the ups and downs better. It only took 5 months and I was able to stop. It was completely different the second time I tapered off. I could tell I was much more healed. I never take this remission phase for granted-I always have entocort on hand for "in case" or if I'm going to travel. I have been inspired by what you've done and how you live your life. I know you'll have this figured out in no time, it just might take a little extra time with the entocort to get there. Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Thanks everyone for your kind and encouraging words. I am sure I'll sort it out too. I think I am going into a flare.. had D. three times today so far... after every time I ate and then some. So I will probably take the Entocort sooner than later... . like tonight. That's a good point Tex, that if I am doing damage by eating something I shouldn't, ( which obviously I am or I don't think I would be reacting) I should minimize that damage by getting the inflamation reduced as soon as possible.
I must say, I am surprised at this turn of events. When taking the Entocort, especialy as little as I was taking, it's so easy to get lulled into thinking that you've got this beat!
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Maggie, thank you so much for giving me the list of ingredients for the biscuit mix. Yes, it all looks good to me too. Hmmm...
I didn't take the entocort last night because I wanted to see if this LDN is helping at all. Appparently not as I had full blown explosive D. this morning. So , back to Entocort on its own. And maybe now I can get some sleep!!!
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Linda, it could be the garbanzo bean flour. I can eat pinto beans, but the garbanzos give me trouble. JoAnn
(I snuck in here during my lunch break-hope your day goes better )
Courage is being scared to death, but saddling up anyway. John Wayne
Thanks for reminding me about the garbanzo bean flour, JoAnn. I had stopped using Garbanzo bean (and sorghum and quinoa) flours before taking the entocort but was able to start again while on it as they didn't bother me. So now I 'hm not sure which ones bother me.. back to square one, I guess.
I am finding this a bit of a dilemma.. while on the Entocort, I don't seem react to much, and can eat pretty much anything but my most reactive foods wheat, egg whites or casein. For example, I can eat all GF flours, and fruit and veggies ( raw or cooked.) But obviously I still have undiscovered intolerances. So how do I figure them out when on Entocort??? I think that's why I was hesitant to start taking it again.. it was such a shock to find out I was still reacting to things, and I really want to know what they are so that I don't continue to damage my intestines... On the other hand, I sure don't want to go back to living with constant D. while I (IF I EVER EVEN CAN !!) figure them all out.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Linda I'm sorry to hear about your setback with the LDN. In looking at the side effects it does list sleep disturbances as one of them. I think your approach of starting at a low dose then slowly increasing it might be beneficial.
As side effects to medications are often mild allergic types of reactions, could your system be in an aggravated state right now that is exacerbating your tolerating the LDN. I would almost wonder if a small dose of something like diphenhydramine would be helpful in determining this.
Visit the Microscopic Colitis Foundation Website
,
So I will probably take the Entocort sooner than later... . like tonight. That's a good point Tex, that if I am doing damage by eating something I shouldn't, ( which obviously I am or I don't think I would be reacting) I should minimize that damage by getting the inflamation reduced as soon as possible. 
