Bobs Prednisone -> Entocort

[bobh]

Here's an update: the remission continued, no problems. Stayed on 2 Entocort a day, occasionally 3 if I sensed inflammation, but never had full "D" return.

At the start of the new year I found my lab test for adrenals showed very, very low Cortisol. Got a script for Cortef, which is a cortico-steroid. So is Entocort. I was doing really well, so 2 weeks ago I stopped the Entocort, and so far doing great.

Today I talked to an experienced pharmacist, he felt I could have continued the 2 without problems - I was up to about 25 mg Cortef which equates to only about 5 or 6 mg of Prednisone.

But he agreed that if I had low Cortisol levels, bringing them up to normal would provide an "anti-inflammatory" quality that I had not been enjoying previous to taking either of these meds, while I was "flaring" last year. And that alone may help extend a remission.

He added that inflammatory bowel disease type colitis can come and go, with a mind of it's own. So be prepared to use the Entocort again as needed. I have experienced that... Time will tell if it comes back while I am on the Cortef for adrenal insufficiency.

Part of my recent decision to stop the Entocort was financial, as I have no insurance and 30 Entocort pills at Costco is $137. Depending how many you need, that's $100 every 10 days. From Canada Med websites for about 1/2 that. I had a negative cash flow, and have a lot of credit card debt now.

I consider Prednisone followed by Entocort to be the only thing that would halt the terrible flare I had last year, and I would do it again if I was flaring that bad ever again. Actually, I would just try Entocort by itself, but the Pred was my Dr's idea due to the severity of my flare, and it worked.

If I had to do Pred, I would start at 40mg for 2 days, then 30 mg for 2 days, then 20 mg for 2 days while introducing 2 Entocort (3 if I was still having symptoms), then 10 mg Pred with the Entocort for 2 days, then zero Pred and just Entocort, 2 to 3 a day depending if having perceivable inflammation.

My original post and experience was to start at 60mg for 2 days, then 50 for 2 days, then 40 etc. But in hindsight, I think that was overkill. If I couldn't stop the flair with 40 mg Prednisone... Maybe I'd stay on it a few days longer rather than going to higher dose. And you HAVE TO TAPER DOWN SLOWLY so the body doesn't get deprived of Cortisol, as it will "down regulate" it's own production of Cortisol as a consequence of taking Prednisone.

If you stop Prednisone suddenly, you may not have enough Cortisol, and it is essential for life. (maybe that's why I didn't feel so great the last 20 years - my recent and only lab test for Cortisol showed barely enough, in one of the final stages of adrenal exhaustion).

For what it's worth, my MD said not to stop Entocort until there was zero inflammation for 3 consecutive months. I was following his advice, till my house was about to go into foreclosure.

But if you can afford it, continuing the Entocort for 3 months beyond symptoms is a great idea, It is otherwise too hard to stop a flare, easier to prevent it. And Entocort truly is safe. Targeted to release Cortico Steroid to the bowels, with minimal systemic absorption.

Anyone interested in my recent adrenal - Cortisol therapy can click here http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5742

[harvest_table]

Thanks for sharing

[framedame]

I'm wondering if there is a connection between post nasal drip and CD or MC or thyroid. I had the post nasal drip and gas & bloating thing 10 years ago and went on a GF diet because I believed I was gluten intolerant. On the diet, all the issues mentioned subsided (not thyroid 8 yrs ago) until this last year. I had a colonoscopy and endoscopy this Jan while still on the diet. The GI felt he might find something since my blood work done in Dec. came back positive for gluten. The report read:

“The colonoscopy revealed findings suggestive of collagenous and lymphocytic colitis. Biopsies of the duodenum showed evidence of increased intraepithelial lymphocytes sometimes seen with celiac.”

He suggested I continue a strict gluten free diet and see a dietitian. The dietitian helped with CD issues but didn’t learn anything about MC.
I’ve been very strict about my GF diet, vitamins, and personal care products. It seems like everything is out of whack. I did discover barley grass in a vitamin and stopped taking that back in October. Could that have caused the positive test for gluten in Dec or are my symptoms due to absorbing some gluten elsewhere that I'm not aware of??? I’m hungry and not sure what to avoid. I have D and then take Imodium and have constipation and gas -- definitely not my perky self. FYI I’ve been off all lactose and caffiene too. I see my GI March 16 to discuss the biopsy and a plan.

[tnelson]

This is really good to hear and I am glad your remission is lasting. It sounds like you had a wonderful doctor. Do you mind sharing his or her contact information?

--TNelson

[tex]

Hi,

After Bob was able to achieve remission, he eventually stopped posting, and it's been 4 or 5 years since he last posted, I believe, so he probably won't see your post.

You might try e-mailing him directly, by clicking on the e-mail button at the bottom of his post. Unless he's changed his e-mail address since he was last here, I'm pretty sure that he would be happy to help you with that information.

Tex

[tnelson]

Thanks Tex. I emailed him.

[bobh]

After Bob was able to achieve remission, he eventually stopped posting, and it's been 4 or 5 years since he last posted, I believe, so he probably won't see your post.
You might try e-mailing him directly

Hi Folks, sorry about disappearing for so long. I was working out of town most of that time (making ends meet).
I was able to correspond with TNelson, and wanted to also share an update with the group.

As noted previously, in 2006 I was having the flare from hell and my doc helped me out with a script for a few days of Prednisone to HALT the inflammation - then start Entocort (also a cortisol-type steroid which is one of the body's hormones with anti-inflammatory qualities).

My labs showed low cortisol, so I got a script for Cortef (not as strong as Prednisone, and very similar to the cortisol produced by the adrenals).
I was enjoying a REMISSION on these meds, and when I started this thread in 2006 I hoped that the Cortisol alone would maintain remission. It didn't...

Normal doses of Cortisol (Cortef or it's generic) alone won't do the job when Colitis is flaring. I went back to Entocort.
Entocort is the same type of med (cortisol) targeted to the gut. Cortisol is an anti-inflammatory. The Entocort is a sustain release and it calms the guts down. Now.

Pepto-Bismal won't help more than a few days, same with immodium. They are OK for the initial problem, then stop working. When the flare is happening (for me it is 75 percent of the time) then only Entocort will do it.

The standard script is 3 pills first thing in the morning, but I only take 2 and it handles it, always, 100 percent certain. I will take it for months and try weaning off, just to see if I can and to save money. Even at the generic (from Canada, made in india) it is kind costly.

Before resorting to meds, I tried all kinds of elimination diets and had lots of tests for intolerances. I remain strict avoidance of wheat and dairy - but that did not stop the colitis. It does help reduce the brain-fog (as the body isn't reacting to the irritant-allergin). For the last 6 years or so I have been on a standard maintenance dose of Cortef (25mg spread out through the day) and Entocort "as needed" (it usually is). I have not been aware of any bad side affects. The last 6 years would have been a daily bummer with the runs I would have experienced. It would have made my employment in the field very, very difficult. I tried "lighter" meds first, such as Asocol (did not help me - I know it can help others).


Good luck,

[tex]

Hi Bob,

It's great to see an update from you, and it's good to hear that you have a treatment program that continues to work reliably for you.

I don't know if you are aware of this, but you can buy the same generic budesonide that the Canadian pharmacies sell, direct from India for a significantly lower price, (you save the Canadian pharmacies' markup, at the very least). Ordering it at the link below, you can get a 90 day supply (270 capsules), for $121.50 plus shipping. This is where most members who order their budesonide purchase it.

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Thanks for the update, and I hope that some day you will be successful in weaning off the budesonide.

Tex

[bobh]

and I hope that some day you will be successful in weaning off the budesonide.

Not a biggie for me at this point - I am glad to have a "cork" that works. Fortunately I need less than the full prescribed dose to maintain control, so all is well.

Wow that price is great, 45 cents a pill. I had just ordered the same product (generic "Budez CR") from Canada at 68 cents a pill. I find that the generic works identical to the name-brand product.

If you had not maintained this site all these years, I would have suffered during that time. People with this condition need answers, and a 15-minute rush with the MD isn't enough time to explore the options. Thanks for being here.

[tnelson]

I totally agree about the importance of this board being here and all the people who give their time to helping. Bob, I appreciated your quick response and also the info about cheap Entocort, Tex.

Bob, one more question: do you have to use the Prednisone each time you restart Entocort? I had the impression you just went straight back to Entocort, but I want to be sure. It's so true that the doctors are just too rushed to be able to explore everything.

I have come to the conclusion that going with Pepto is just a waste of time and it seems less safe than Entocort. I'm moving straight to the "big gun" Entocort if I give up on the diet-only option (I won't go back to eating unsafe food, however). I wonder if I should try colozol first (I think that's the name of the anti-inflammatory)? These are options I am exploring. Any opinions are welcome. I'll also read the treatment section.

Thanks everybody.

[bobh]

Bob, one more question: do you have to use the Prednisone each time you restart Entocort? I had the impression you just went straight back to Entocort...

I haven't taken Prednisone after the little 3 day course my doc prescribed in 2006. If I am feeling really good and have had normal BM for a couple months, I simply stop the Entocort. When things get loose again (could be days, or months later) I start back on the Entocort.

I suspect I could have done OK without ever taking the Prednisone, but my doc wanted to make SURE that the horrific flare from hell that I was in the middle of was HALTED and to give the Entocort the very best opportunity it could have of working. Entocort was introduced after a 3 day course of Prednisone which is a very strong anti-inflammatory.

I have almost been killed several times by various accidents and feel every day is a gift - am not as cautious as most people. If I was giving advice to someone else, I would say to avoid Prednisone and try the Entocort by itself, with the full normal dose of 3 pills at wake. Prednisone is very strong stuff and some people have had issues with it.

[tex]

Bob,

That's great advice, and your input is much appreciated.

Many members have come to the conclusion that if an Entocort treatment regimen is tapered not just slowly, but extremely slowly (as 3 to 6 months), the risks of a relapse are significantly reduced. This makes sense because corticosteroids actually retard healing (inflammation is a necessary part of the healing process), so the more gradual change allows the healing process to return to normal without the abrupt changes in the immune system that discontinuing a corticosteroid brings. Corticosteroids work by suppressing the number of mast cells in the lamina propria of the mucosa.

My theory is that if a corticosteroid is discontinued abruptly, the shock of a sudden (relatively speaking) increase in mast cell numbers tends to cause inflammation, and this is probably what initiates an eventual relapse. While T cells are claimed to be the primary mode of inflammation in MC, IMO, that is incorrect -- mast cells are the actual primary source of inflammation with MC. T cells received the credit early on, when they were discovered in association with the disease, so they were officially declared to be a marker of the disease. Recent research suggests that mast cells are the primary source of inflammation, however. MC is not a one-issue disease.

As Polly correctly points out, MC is the syndrome that results from inflammation caused by various complex immune system reactions. The medical community still has a long way to go before they will be able to actually understand the disease.

Tex

[bobh]

That is some news I can use. I will taper more slowly.
And as noted elsewhere, I don't need the full dose of 3 pills a day to maintain remission. I can get by on 2.
I am reading that some people on this board maintain remission on much less (one Entocort a day, or 1 every other day). I will try that. Always learning something here.

[Gloria]

Hi Bob,

I remember reading your posts when I joined the board five years ago and I wondered how you were doing.

I'm impressed that you are able to go on and off Entocort at will and it still is effective for you. I, too, went off Entocort several times, but had to go back on it each time after a couple of months. The last time I went back on it, it wasn't very effective. It reduced the urgency and frequency, but I still didn't have normal BMs. After seeing no improvement after 6 months of taking 3 pills a day, I decided to reduce to 2 pills a day and take 1/2 Imodium in place of the one pill. That has helped return normal BMs. I don't think I will be going off Entorcort anymore for fear it won't have any impact.

Gloria

[bobh]

I decided to reduce to 2 pills a day and take 1/2 Imodium in place of the one pill. That has helped return normal BMs.

What a great idea, never thought of that. Imodium (by itself) helps me for a couple days but over the long haul seemed to stop working. Never thought of using it in combination with Entocort. Aside from being really cheap if you get the imodium generic from Costco, I am sure it would help me to reduce the amount of Entocort I need to maintain normal BM. Thanks for sharing.