Update (back on Entocort but ok)

[ant]

Dearest Friends,

I feel a bit guilty, since I have been away from these boards for a few weeks. I have been reading but not posting, mainly because I have been unsure what to say about my flare.

Before I get to that, to all newbie’s - welcome!!! - I am sorry I have not welcomed you individually. And to all – old and new – who continue to struggle with this D@@d disease, I continue to be in awe of the care, unbelievable flow of information and advice, and indomitable spirit of the PP family.

In case it is useful here is my update…..

I went on 9mg Entocort in July 2009 and shortly after adopted a GF, DF, EF, SF (and other legume F) diet. About November 2009 I also went Nightshade F and cut back on fructose. Gradual MB frequency and firmness resulted and I started tapering down the Entocort from Jan 2010.

I went off Entocort completely on 25 August 2010.

But, on 16th October a major flare attacked me. It could have been caused by Entocort effect wearing off after two months without the drug; a food intolerance intake (“Walls” sherbet / too much fructose – still not got a response from Unilever on this and have just sent a stinging message to their HQ); or stress (my mother -in UK - had temporarily been sent to a home for 10 days by my sister and I had not known of the decision till it was too late to intervene)....or a combination of these three possible causes.

Anyway, the flare continued to 31th October and since then I have returned to Norman, or near Norman, for the last week.

BUT….. to achieve this outcome I have gone back onto Entocort (9mg from 25th Oct down to 6mg from 1st Nov).

Also, from 25 Oct to 1st Nov I took a couple of Imodium and 6 to 9 pepto a day to “throw everything at it” to get rid of the flare…. Thank goodness that seemed to work……

But, now we are left with some questions? Would Imodium have conquered the flare without the need to resort to Entocort?? (Polly’s experience suggests it might have). Could pepto have achieved remission by itself? (I doubt it – but did not pursue a pepto only regime so cannot know for sure).

And now the big question……how fast to (again) try to taper down the Entocort??? I seem to be doing OK with 6mg a day, but what with possible skin thinning and muscle atrophy caused by the steroid (not to mention my Osteoporosis issues), I want to taper down ASAP.

Another observation is that my stiff fingers (arthritis?) have got better since going back on Entocort. Good, but maybe not so good…...since this suggests an immune suppressing effect beyond the gut? So how systemic is Entocort??

Questions, questions.….

Sorry this post is a bit self-indulgent. I hope to regroup my emotions and contribute more. I have had to internalize what this relapse means to me. The good news is I have been able to control the situation. The bad news is I needed meds.

For everyone (newbees and oldbees) who go into relapse please know I, like so many of us, have walked through the fire and then walked through it again. But we are still here..... and NOTHING WILL STOP US FIND THE POSITIVE IN LIFE. WE WILL NOT, NOT, NOT, GIVE IN!

Love, Ant

[grannyh]

I just wrote this on another thread about trying to taper off in 6 days....

"I once asked my GI doc if anyone had gone off entocort totally and then when they had a flare.. it no longer worked.. he said he did not know of any cases. He said that although CC can be controlled either with diet or medication it can't really be "cured". He said there was no reason for me to go off entocort. I could taper down to one dose a day and only take more if I had a flare. As I said above.. it took several years to get to two pills a day.. and then to get to one.. I didn't just abruptly go to one a day. I took two one day and one the next.. it took trial and error but I finally made it.
grannyh"

[Joefnh]

Hi Ant that's a great attitude about finding the positives in life. In my research into Entocort it does appear to have a reasonable systemic effect. The write ups I have seen state the following:

1.) Entocort's corticosteroid effect is 15x stronger than Prednisone
2.) About 10 - 15% of the Entocort is absorbed systemically

So at 9mg of Entocort you can absorb anywhere from .9mg to 1.35mg of Entocort (budesonide) which would have the same corticosteroid effect of roughly 14mg - 20mg of Prednisone, which is a moderate dosage to be on for a long period of time.

So yes the Entocort can and does have a moderate systemically effective dose. I noticed this as well as when I was taking the full dose it really did a great job of reducing the aches and pains from arthritis in my lower back and knees.

Currently I am transistorizing from Entocort to Imuran which has a stronger anti-inflammatory effect, and have noticed while I am tapering off of the Entocort and allowing the Imuran to work up to full strength, that I did have a 2 week period of reduced 'coverage'. During that time when I was on 3mg of Entocort the D and the aches & pains increased. In the last week the Imuran is now 'up to speed' and I feel quiet a bit better all around. I should totally be off of the Entocort by the end of this week. The reason I am transitioning to Imuran was to provide better coverage for the Crohns and to avoid the side effects of long term Entocort usage.

It great to hear form you Ant and I am sorry that you are dealing with a flare. You have been so patient and methodical in your approach to managing MC. I have learned quite a bit from following your posts. I hope you feel better soon


--Joe

[Polly]

ANT! Welcome back! I have missed you.

I have been wondering how you are doing. Thanks for the inspirational update on your progress. Glad to hear that Norman has returned. I think you were wise to go back on the Entocort temporarily. I really believe that it is important to nip flares in the bud (throw everything necessary at them) before they take on a life of their own. I waited too long (2 mo.) after my dog died to attack the flare, and it just got worse and worse. I should have done something immediately, I now realize in retrospect.

You certainly have reasons to be flaring. That must have been a shock about your Mom. I have only recently appreciated the major role of stress in causing a flare. Also, long term (chronic) stress has an impact, too. My Mom had dementia for 10 years before she died, and I worried about her daily, especially if I didn't see her. I know you are dealing with this, too. It is quite unsettling.

I am guessing that you did need the Entocort to get things under control quickly. Don't forget, I have been on the diet for almost 10 times the amount of time that you have. LOL! And we know that my gut had healed completely as of this past July 2 - when my biopsies were negative during colonoscopy. That is probably why my less intense regimen was able to work.

Re the tapering.....I guess it's an individual thing. I would think that you could taper more quickly now compared to initially, since your gut is partially healed. Someone recently had calculate the generalized equivalency of Entocort - was it Joe? I think he said it was the same as 17 mg., which is not a huge dose. Joe - do you have more thoughts on this? Oh, I see that Joe has already discussed this above.

I hope it's all smooth sailing from here.

Love,

Polly

[Ginny]

Ant, being thinking about you a lot recently since you had not posted; much sympathy but also stay encouraged. I think GrannyH is a good measure for all of us "hard-core" sufferers. We have to function and if that means using a drug, well so be it. I also went off Entocort about a month ago and am experiencing some difficulties as well. My gut never stops grumbling the minute food enters my mouth, eyes incredibly itchy/dry,and now certain joints are sore (which did not happen before). I am still trying my way with only Imodium, but if I can not get this under control, I will have to go back on Entocort for a little longer. The Imodium does help, and I think Polly's approach to exercise and "quiet" time is to be considered.

I guess my question would be is this another intolerance or we just have longer to go to heal?

Glad at least you are feeling better. For me, it really is important for mental stability. Ginny

[Linda in BC]

Hello Ant and thanks for letting us know how you are doing. So good to hear from you, and that you got the flare under control so quickly but I am sorry that you had to go back on Entocort. I know you were relieved to be off of it. Please know that your posting about your condition is not self-indulgent at ALL! We WANT to hear what is happening to you .. the good and the bad... but I know that hesitancy to post about it until you are sure what is is really happening... I have developed an aversion to saying "Norman!" one day and then "Ooops! Not Norman" the next... You have been such a big support and spark of sunshine for all here, of course we want a chance to return the "good stuff" to you...

I agree with Polly that you would likely have needed the Entocort to stop the flare, but also that tapering down should go faster this time around simply because you didn't let the flare go on and on, and you have already done so much healing. When I started Entocort last month I was still having D. but because I had made so much progress with diet and taking the LDN before I started the Entocort, I only needed to be on the full dose for a week, two pills for two days and was able to drop right down to one pill a day within a couple of weeks of starting it. You have likely done a lot more healing of your gut than I had, so have hope that you won't need to start back at "square one" and let your symptoms guide you in the cutting back.

Will be thinking of you and sending positive, quick-tapering thoughts your way.

Linda

[Kari]

Hi Ant,

So glad you've posted an update - have been wondering about you. It seems that even though we each have to listen to our instinct about how to handle our flares, we still question ourselves about our decisions. Don't be too hard on yourself, you've most certainly done what you thought best. I've been fortunate to be in a relatively stress free time period, so focusing on my healing pretty exclusively has been possible. I'm quite certain that the stress you've experienced with your family has added to the severity of the flare. However, you've still managed to reign it in within a short time period. Good for you!!!

Wishing you continued success in your efforts to manage your MC.

Warm regards,
Kari

[grannyh]

I was on lomotil for a couple of years before entocort came back on the market in the US. It gave me some freedom but I was exhausted all of the time.. it made me very sleepy. I could take it in the morning and could at least be out of the house for a few hours a day between about 9 am and mid afternoon. It wasn't a real solution.. but it got me through until I started entocort. I can't take pepto ... it makes me barf.. always has and I have no idea why..
grannyh

[Rosie]

Ant, good to hear from you, and I'm sorry to hear you have been dealing with a flare. It seems especially cruel to have one after you had been doing so well and had accomplished your goal of getting off Entocort. This disease is incredibly humbling!!

Rosie

[JoAnn]

Hi Ant, I have also been wondering how you have been doing. It's almost like your recovery is a year behind me in my history. It was about a year ago that I went into a flare that devastated me emotionally and physically. You've read my story, but just quickly, I went into a flare around Dec. 1, tried to battle it with diet only (had been off entocort a few months) mid-Jan went to my pcp who put me on a week's low dose of prednisone and shifted to the full-dose entocort. The prednisone stopped the flare in it's tracks and the entocort took over. Like you, I felt terrible that I had to go back on, but I needed it to function. I decided then that I would not let someone elses time-line guide me, but I would do what I needed to do no matter how long it took. I followed my instincts and I think I started tapering down in April and was completely off by the end of June. I actually stayed on it longer because of professional and family commitments that I had to deal with, but looking back I think it was a good thing. I've been off 4 months now and things are good. I really think each of our bodies needs a certain time to heal properly and it varies with each of us. I know this is easy for me to say, but I would try to accept the fact that you need it right now and your body will tell you when it's time to taper. I know my gut is so much stronger now than it was a year ago when I went off because I've been able to add things back in my diet and I react if somethings not right but recover right away. (You might have read my cough drop story) I am almost superstitious about saying I'm doing well because with this disease you never know what can happen. There truly is a thin line between remission and relapse. I know it was very hard on me emotionally to go back on, but the out of control D was worse. I am one who has walked where you are walking and am still walking never taking remission for granted. I'm bracing myself to get through the holidays without problems. I truly hope you can feel better about having to be on the entocort now and look forward to not using it later down the road.
We might be taking a trip over the holidays, and if we do I am going to go back on entocort for a safety net and then taper off again. I decided this after traveling last August and Polly seemed to think it would be OK. You'll be in my prayers and positive thoughts and just know you are not alone, JoAnn

[grannyh]

JoAnn is so right... we each have to find our own way with this illness. If there was one way that worked for everyone.. we would have all grabbed for it immediately!

Getting our life back is a tedious journey we must each forge for ourselves with helpful suggestions and support for our trip.

I don't even like to think what my life would be like had I not found this site... it gave me hope that one day something would work for me if I just was patient and diligent.
grannyh

[tex]

Ant,

Bearing in mind that researchers generally prove what they set out to prove, (one way or another), there is a range of conclusions, concerning the effects of budesonide on bone mineral density, (BMD). This first reference is from an old study, (published 16 years ago, in the New England Journal Of Medicine).

The mean morning plasma cortisol concentration was significantly lower in the prednisolone group than in the budesonide group after 4 weeks (P<0.001) and 8 weeks (P = 0.02) of therapy, but not after 10 weeks.

Conclusions

Among patients with active Crohn's disease, both controlled-release budesonide and prednisolone are effective in inducing remission. In this trial, prednisolone reduced scores on the Crohn's disease activity index more, whereas with budesonide there were fewer glucocorticoid-associated side effects and less suppression of pituitary-adrenal function.

http://www.nejm.org/doi/full/10.1056/NE ... 9293311304

Unfortunately, another study, (published 8 years ago), shows:

CONCLUSIONS:

Patients with CD receiving maintenance treatment for 2 yr with prednisone show little change in BMD, whereas treatment with budesonide may be associated with LS and FN bone loss. Budesonide does not confer an advantage over low-dose prednisone for the preservation of BMD.

http://www.sciencedirect.com/science?_o ... archtype=a

As you are probably aware, "LS" refers to Lumbar Spine, and "FN" refers to Femoral Neck. CD stands for Crohn's Disease, of course, (not Celiac Disease).

But, how in the world can one trust researchers that claim that, "Patients with CD receiving maintenance treatment for 2 yr with prednisone show little change in BMD", and in their next breath, they condemn budesonide as a BMD risk?

For some reason, I tend to have more faith in the conclusions of the following research, done 5 years ago, in the Netherlands, (probably I have more faith in it because it follows the guidelines of common sense, and logic):

Abstract

BACKGROUND & AIMS: Osteoporosis frequently occurs in Crohn's disease, often because of corticosteroids. Budesonide as controlled release capsules is a locally acting corticosteroid with low systemic bioavailability. We investigated its effects on bone compared with prednisolone.

METHODS: In 34 international centers, 272 patients with Crohn's disease involving ileum and/or colon ascendens were randomized to once daily treatment with budesonide or prednisolone for 2 years at doses adapted to disease activity. One hundred eighty-one corticosteroid-free patients had active disease (98 had never received corticosteroids, corticosteroid naive; 83 had received corticosteroids previously, corticosteroid exposed), and 90 had quiescent disease, receiving long-term low doses of corticosteroids, corticosteroid-dependent; in 1 patient, no efficacy data were obtained. Bone mineral density and fractures were assessed in a double-blinded fashion; disease activity, side effects, and quality of life were monitored.

RESULTS: Neither the corticosteroid-free nor the corticosteroid-dependent patients treated with budesonide differed significantly in bone mineral density from those receiving prednisolone. However, corticosteroid-naive patients receiving budesonide had smaller reductions in bone mineral density than those on prednisolone (mean, -1.04% vs -3.84%; P = .0084). Treatment-emergent corticosteroid side effects were less frequent with budesonide. Efficacy was similar in both groups.

CONCLUSIONS: Treatment with budesonide is associated with better preserved bone mass compared with prednisolone in only the corticosteroid-naive patients with active ileocecal Crohn's disease. In both the corticosteroid-free and corticosteroid-dependent groups, budesonide and prednisolone were equally effective for up to 2 years, but budesonide caused fewer corticosteroid side effects.

http://www.ncbi.nlm.nih.gov/pubmed/15704045

Okay, let's look at what this is saying:

Neither the corticosteroid-free nor the corticosteroid-dependent patients treated with budesonide differed significantly in bone mineral density from those receiving prednisolone.

That says that the disease is the primary cause of the BMD problem, (not the treatment). But more than that, it says that once a patient has been treated with prednisone long enough to become dependent, then subsequent treatment with budesonide, will have the same BMD effect as prednisone.

However, corticosteroid-naive patients receiving budesonide had smaller reductions in bone mineral density than those on prednisolone

That means that patients treated with budesonide who had never been treated with a corticosteroid, previously, had lower BMD reductions, when compared with those being treated with prednisone. That's an important distinction. It says that that budesonide is a safer treatment.

I don't know how you feel about Winston Churchill, but he was always one of my inspirations, and your comments about not giving in, reminded me of his famous lines, used in one of his speeches, back during WWII:

http://www.youtube.com/watch?v=vzh-xq65rMs

Personally, while I don't consider budesonide to be a drug without risk, I agree with GrannyH, that many misinformed doctors give it a bum rap, simply because it is in the corticosteroid class. That said, the sooner you can get to 3mg per day, the better off you will surely be, but I see no need to rush decreasing the dosage from there. When confronted by conflicting information, we have to put things into perspective, and make our decisions based on sound judgment and logic. After all, your BMD issues are not due to the use of budesonide - they are due to the malabsorption problem caused by gluten-sensitivity. That has probably been going on for decades. Using budesonide for a few years, in order to resolve that malabsorption problem, has to be a positive step, not a negative one.

Remember, though, like you, I'm just a student of this disease, and not a medical professional. Personally, I feel that one is likely to have much better success tapering off budesonide, when their prevailing stress level is at a low to moderate level. Trying to eliminate such a safety net during times of high stress, IMO, greatly lowers the odds of success. At least that's how I see it.

Best of luck with however you decide to proceed,
Tex

[hoosier1]

Welcome back Ant,

I have had some issues too, where I simply lurked or posted privately to others. So I understand your "laying low" for a while.

I see no problem reaching for the big guns when you need to. If only our doctors understood this. They would if they had our symptoms.

I was tapering for a week but have gone back to the standard dosage per the recommendation of this board. I don't think I have truly found this elusive remission. But I tend to think I more like a UC patient as opposed to an LC patient (at least by my symptoms). So I tend to think I may be more difficult to treat.

Anways.... good to have you back!

Rich

[mbeezie]

Welcome back Ant! Was wondering where you were. Glad you are getting things under control, even with the Entocort. I know your diet is limited but I am hoping you can still enjoy a glass of wine without trouble I recently read an article about how alcohol suppresses the immune system and may benefit people with autoimune disorders. I am hoping that is true

Take care and keep us posted on your progress.

Hugs,

Mary Beth

[Gloria]

Hi Ant,

I, too have been wondering how you've been doing. I suspected that you were having problems and needed to pull it together before you posted. I've been there, too, as you well know. I know how disappointing it is.

You really don't have much choice but to return to Entocort when you're having a flare that won't resolve by diet alone. I don't think there are enough of us with experience at reducing Entocort, then flaring again, to say with surety that one method works over another. We're still learning and experimenting, and each of us is different. In my case, each flare I've had following Entocort reduction/elimination has been different. The one consistency is that I've always had to eliminate additional foods.

I'll begin tapering Entocort once I return home. I'm not sure if I'll try to get off of it completely. I have osteoporosis like you and would like nothing better than to be off of it completely, but that may not be in the cards for me. I'll be sure to post how I'm doing as I taper. I do feel like my gut is doing much better than the other times.

Good luck - I hope you'll do fine as you continue to reduce your dosage.

Gloria