Thinking about going back on prednisone

[Beth]

Hi everyone,

I just can't seem to get better, and it's going to be awhile before I can see anyone knowledgeable about MC. So, I talked to my GP, and she agreed to prescribe another 10-day round of prednisone. What do you all think of this? Should I continue with the 9 mg of entocort while I'm doing the prednisone again? (I'll be tapering down by ten mg every two days.)

Bob - I thought your posting about adrenal fatigue and the connection between cortisol and imflammation was really interesting. I'm going to print your post out and take it with me whenever I see a GI next. I'll also take it to my naturopath when I go see her next week. Thank you for taking the time to write about that. Fascinating. Also, I was going to go get my blood drawn today to test for thyroid, just as that website you posted suggested, but I wasn't feeling well enough to get out today. I'll try to do it on Monday.

Anyway, if anyone has any thoughts about the prednisone course, I'd love to hear them.

Thanks,
Beth

[Polly]

Hi Beth!

I think a course of prednisone is a good idea. I think some here have done the prednisone followed by the Entocort, but I can't see any major reason not to take both at the same time. Bobh and Joanna are the experts on this, so hopefully they'll weigh in.

It does sound as if you need to SOCK the old MC into submission with a big gun, IMHO.

Love,

Polly

[tex]

Beth,

Let's not forget Grannyh's unfortunate. (life threatening), experience with an unintentional corticosteroid overdose. If you're not going to withdraw from the budesonide in time for most of it to work it's way out of your body, I think it would be advisable to not only reduce the dosage rate of prednisolone, by a sufficient amount to compensate for the build-up of budesonide that's already in your body, but to also reducing the doseage rate to allow for the additional budesonide, if you continue to take it along with the prednisolone.

Remember, the corticosteroids have a residual effect, and have to be withdrawn from, gradually. Also, just because the budesonide is not controlling your symptoms, does not mean that you do not have an "adequate" level already in your body. You might be one of those individuals for whom budesonide does not control your symptoms, (due to a gene, or whatever), but that's no guarantee that an overdose cannot seriously disrupt other bodily functions. We're in uncharted waters here, and I doubt that the medical textbooks cover this particular situation.

In Grannyh's case, she stopped taking the budesonide, when she started taking the prednisolone, but apparently she still had a significant amount in her body, because things got out of hand in a hurry. Her doctor apparently didn't recognize the risk, when he prescribed the treatment.

You might be luckier than she was, but personally, I would be afraid to assume the risk. Prednisolone is a serious med, and it can be very unforgiving, when things go wrong.

Wayne

[bobh]

she agreed to prescribe another 10-day round of prednisone. What do you all think of this? Should I continue with the 9 mg of entocort while I'm doing the prednisone again? (I'll be tapering down by ten mg every two days.)

I would not "double dip". The thing that really worked for me was to INTRODUCE the Entocort when the Prednisone protocol is almost down to nothing.

Specifically, I did 60 mg of Prednisone for 2 days (no Entocort). Personally, I had formed stools upon waking up the 2nd day. Just on the Prednisone.

Then I did 50 mg of Prednisone for 2 days
Then I did 40 mg of Prednisone for 2 days
Then I did 30 mg of Prednisone for 2 days
Then I did 20 mg of Prednisone for 2 days, and introduce 2 Entocort
Then I did 10 mg of Prednisone for 2 days, and maintain 2 Entocort

Off Prednisone, maintain 2 Entocort, take them together in the morning, if you feel like you need it take a 3rd one during the day - but I rarely do.

MAINTAIN THE 2 ENTOCORT A DAY UNTIL NO INFLAMMATION FOR 3 MONTHS before tapering down, if you can taper down at all.

In a couple days it will be my 5th month aniversary without "D" and I have a formed stool every morning, occasionally another BM late morning but never "D". Yet I do sense some inflammatory process at least weekly, but it never gets out of control.

My MC was so horrific, and for 15 years, I am 100% certain it would take over if I stopped the meds. As I type this, I can feel inflamation in the descending colon / rectum area, which is typical for me. I know that it would "explode" without the cortico-steriod targeted to the bowels, and also since learned that my adrenals don't make enough cortisol, and neither do yours per the test you had done 2 months ago.

One of the functions of Cortisol is to reduce inflammation, it is produced by the Adrenal Cortex. You die if the body doesn't make it. You may feel 1/2 dead if it isn't making enough of it (but I'm not saying it is a direct cause of MC, low cortisol does not = MC, but adequate cortisol has been shown to help combat autoimmune processes).

The Prednisone should step in and HALT inflammation, everywhere (not tartgeted to the bowels). It is a synthetic cortico-steroid, and kind of like hitting the symptoms with a baseball bat. My brain fog went away. It gets into the bloodstream. But it has to be a short, fast, hard, hit. You don't want to prolong it.

I am eating almost totally paleo right now, no gluten, sugar, alcohol, etc. My body is wired such that the inflammation would simply take over. I can eat like a saint, and get punished like a sinner. But if I violated my diet, probably nothing would stop the colitis. Entocort really works for me, and I hope this works for you.

[bobh]

...Let's not forget Grannyh's unfortunate. (life threatening), experience with an unintentional corticosteroid overdose. ...Prednisolone is a serious med, and it can be very unforgiving, when things go wrong. Wayne

Yep. and here it is straight from the Granny's mouth:

I have never been able to reduce my Entocort dosage.. have stayed with 3 a day. The doc says not to worry that very little is really absorbed anyway.

I can also attest to the fact that prednisone brings a fast remission... i had that when I hurt my back in May ... unfortunately they gave me the wrong dose and darn near killed me with a stroke! The remission lasted about 3 months..then had to go back on the Entocort... grannyh

that was from her post in October 2006.

I think the key term here is "overdose". Any tool can be misused, but that doesn't mean you cannot use the tool - you just have to respect it (Mathew knows what I am talking about - fellow woodworker).

The flip side to this, is the EMPOWERMENT of taking control of this inflammatory bowel disease, and marching it right into the corner, and telling it to set it's ass down and leave you alone. Prednisone will do that. You have the bottle, you count out the pills, and you don't screw it up. My script was for 10 mg pills. You count out 6 the first day (take them all at once).

That's different than having a caretaker dose out the wrong thing to you when you are in a bed and trusting them to do the right thing.

[starfire]

Well, for what it's worth.............my G.I. had me start the Entocort while I was still on pred. I was on both maybe 2 or 3 weeks while I decreased the pred. Didn't seem to bother me any. However, my highest dose was never more than 20 mg of pred. There was no change in my MC during or after the transition.

Good Luck............. so sorry you are having such problems getting it under control.

Love, Shirley

[Beth]

Okay, so I'm a little confused. Do you think I should taper down on the entocort, then begin the prednisone, and then add the entocort back in? And if I do that, how long should I take to taper down on the entocort? If I taper off the entocort first, am I putting myself at risk for an even bigger flare?

Whatever you can advise I would very much appreciate.

Thanks,
Beth

[kate_ce1995]

I think a very direct conversation with your doctor and perhaps (maybe better) with your pharmasist. Be aware of the risks, and warning signs of a reaction/overdose so you can get treatment asap if necessary.

Katy

[tex]

Beth,

I'm not sure that we are all on the same page here concerning the mixing of steroids. Before you start a regime which includes more than one of them, please read the topics below, which give a play-by-play account of Grannyh's ordeal with her experience with mixing them.

She had been taking Entocort, and her doctor told her to stop taking it, (but without any withdrawal period), while taking the Dexpak treatment, (which was prescribed because of a back injury). Note that in various places, she mentions that the doctor prescribed an overdose. Technically, that's not exactly accurate. The doctor prescribed a 13-day Dexpak treatment. She took them as directed by the label, (except that after several days, she became concerned, and decreased the dosage by one pill). Since she was still having MC symptoms, she decided to resume taking some Entocort. She didn't even make it halfway through the 13-day course before it was obvious that she was in serious trouble.

Please read all of her posts, (and my responses), in the topics below. I think that you will see that I am not a "Johny-come-lately", when it comes to being concerned about the use of steroids - especially the risks of mixing steroid treatments:

http://www.perskyfarms.com/phpBB2/viewt ... ght=#22068

http://www.perskyfarms.com/phpBB2/viewt ... ght=#22129

http://www.perskyfarms.com/phpBB2/viewt ... ght=#22654

Note that the active ingredient in Dexpak is approximately 7 times as potent as prednisolone, which makes it much more"persistent", once it is in your system. Based on that, I would assume that your risk in the situation at hand is not nearly as great as Grannyh's risk was, but I would still be concerned about taking two steroids at the same time. The primary problem is that combinations can put you into uncharted territory.

In my opinion, the primary problem here was the fact that she already had an accumulation of budesonide in her system, when she started the Dexpak treatment. Considering that budesonide is not a systemic, (it does not activate until it reaches the ileum, which puts it out of reach of most of the nutrient absorption function of the GI track), her adverse reaction was rather surprising. It emphasizes how easily things can get out of hand, when we drift into uncharted waters.

Please don't misunderstand me - I'm not against the proper use of these meds. I'm just concerned about the risks of improper use. As you can see by what happened in Grannyh's case, the risks are serious, and the damage can be permanent. The tricky part is that they are somewhat "persistent" meds, in that they continue to affect the body for a while, after the treatment program is terminated.

Wayne

[bobh]

Tex, thank you for gathering that data! I'm sure that will help others who are researching this topic.

... If I taper off the entocort first, am I putting myself at risk for an even bigger flare?

We have different circumstances - so I can only speak for what I would do.

A. If I was concerned about a "bigger flare", then I would have to believe that the current "smaller flare" was being somewhat controlled by Entocort. With that scenario, I would increase the Entocort (within the pharmacist guidelines) and give it more time. I wouldn't do the Prednisone at all.

B. If I was currenly miserable, experiencing explosive "D", then I would have to assume that the inflammatory process was raging out of control. The current protocol was not effective, and time to shift gears. Based on what Tex just said, I would err on the side of caution and take a short break from the Entocort before introducing the Pred. Ask the pharmacist how long it stays in your system.

There are shades of grey in life, maybe it isn't a simple A or B choice. Part of your guidance may be looking back at how things went when you tried a short-hard dose of Prednisone in December. If it halted the flare, didn't make you feel to "Manic" (I had some of that but it was OK), then at least you have some prediction on what to expect with that choice.

[tex]

Beth,

I agree with Bob's suggesions. We are all different, and we follow individualized programs, and we have to weigh all the facts, relative to our own specific situation, when making a decision of this type.

To further clarify to what I wrote about the Dexpak not being an overdose - it's true, that it affected her as if it were an overdose, and as far as her body is concened, it was indeed an overdose, but I believe that wouldn't have been the case if she had not already built up a "working" resorvoir of another steroid before she started the 13-day program. Her doctor overlooked the existing supply that was already in her body, (probably because that's uncharted terrigtory - IOW, it's probably not spelled out in the textbooks).

If safe limits are exceeded, once you cross a threshold, and body systems start running into trouble, it can be very difficult to get things back under control, because residual levels of steroids continue to add fuel to the fire, until the levels gradually wear down. As bad as MC is, it's not normally life-threatening, the way that heart problems often are.

We all want to see you achieve remission as quickly as possible, but not at the expense of damage to other vital organs. I think that Katy's suggestion to discuss this with your pharmacist, is an excellent idea. Pharmacists often know a lot more about meds, than the average doctor, because meds are what their work is all about, whereas meds are only a relatively small part of a doctors daily routine. Doctors know how to use meds, but I suspect that pharmacists are more likely to understand how they work, and more importantly, how they work together. And last, but certainly not least, pharmacists are almost always willing to give you expert advice, free of charge, and that's nothing to sneeze at.

Wayne

[Beth]

Hi Wayne,

Thanks very much for cautioning me about this. I was out all day today teaching and then my husband and I went to a very poorly performed Winter's Tale (what a disappointment!) - so I'm just getting a chance to respond now. I completely agree with you - I want to be better, but not at the risk of causing much more significant problems. I did call the pharmacist today, but she didn't know anything, and my GP knows absolutely nothing about all of this. So, I didn't start the prednisone. I think I'll hold on to it until I can see a GI about this. And I'll also see if the pharmacist knows about increasing the entocort. Maybe that would help get me through until I can figure out how to reduce the imflammation safely.

Thanks so much for all of your help and advice, everyone. I wouldn't be able to get through this withour your incredible store of knowledge!

Best,
Beth

[bobh]

I did call the pharmacist today, but she didn't know anything, and my GP knows absolutely nothing about all of this.

Wow. Every day it becomes more apparant to me how important it is for the patient to do research (like you are doing) because competent help is so rare.

[tex]

I have to second Bob's "Wow". The term "frustrating" doesn't seem adequate to describe the situation, does it. <sigh>

Wayne

[Polly]

Mornin' Beth!

I would think that your GP should be able to monitor you on the prednisone dosepack - it is used quite frequently in general practice for a variety of reasons. I guess she's unfamilar with MC and Entocort specifically.

It would only take a day or two at the most for the Entocort to leave your body after stopping it. Only about 10% of it is absorbed systemically anyway - and 80-90% of the absorbed amount is immediately metabolized (deactivated) - within hours. That is why is has far fewer systemic effects than prednisone. The bulk of each dose (90%) remains in the colon and does not affect the rest of the body.

Entocort is recommended for mild to moderate colitis (it was developed and tested on Crohn's patients), so if you are experiencing severe colitis, it may not work until you have had a course of prednisone first. Also, it was developed primarily for inflammation occuring in the last part of the small intestine (ileum) and the first part of the large intestine (ascending colon). So if your inflammation is affecting the other 2/3rds of your colon (the transverse and descending colon), Entocort may not be as effective.

Of course, if your doc does not want to treat you, then perhaps it's best not to insist. Do you have any ideas about how to find a good GI doc? Where do you live? Perhaps others here will have some suggestions.

I hope you can get the appropriate treament as soon as possible. It is miserable living with active MC, as we all well know.

Hugz,

Polly