Thinking about going back on prednisone

[harvest_table]

Beth,

Sorry your having such a hard time. I can't help but wonder if your experiencing to some degree what's called a herxheimer reaction to your current medication & diet plan as your body is detoxing?

There is info out there on it, here's a discussion from another site that explains more about it.

http://72.14.253.104/search?q=cache:Z58 ... =firefox-a

I just need to be under the care of someone who knows at least something about MC since my doctor is so totally unreliable.

Just for what it's worth, the GI that DX my CC knew very little about treating MC. Literally, everything I have learned through my journey has come from the folks here and research on the internet. I was able to make my own choices about what I hoped would be a plan to find relief but just knowing I had an open and responsible GI at least monitering my use of steriods made me feel more comfortable. I hope your search will bring you someone your more confident in, and soon!

BTW, what do you teach?

Love,
Joanna

[starfire]

Please be aware that it normally takes Entocort longer to have any effect on MC than it does for prednisone. That's why some of the G.I. Docs like to start you on pred, then introduce the Entocort.

If you are not taking enough or cut back too soon I think it makes sense that it might not work at all.

I'm really sorry you are having such a hard time, Beth. I hope you find help soon.

Love, Shirley

[tex]

Beth,

I agree that the C you were having, probably was MC-related. Some of us tend to alternate, during reactions, and some have just one or the other.

FYI, the reaction that I had from the oats that I tried during the past week was C, for about a day, followed by D, for a day or so, along with a few body aches and pains.

With Entocort alone, an overdose is not much of an issue. I think that you can safely double the normal dose, if you want to get the inflammation's attention.

Wayne

[barbaranoela]

Hi Beth------

I have to stick in my 2 cents worth---

Personally I wouldnt take entocort and Pred. together----
My Xperiences with both--
Pred. was on it(twice-at different times) and monitored by my GI----
He lowers the pred. very slowly----
30 mgs. first week
25---week 2
20 --week3
17 and 1/2 --week 4
15--week 5
12 and 1/2--week 6
10--week 7
5--week 8
then 2 for week 9
Thats his regimentation

I tried Entocort----and I had NEUROLOGICAL issues with it!!! I couldnt believe it---only on it for 2 dayz---and when I called---STOP NOW!!
Slurred speech---unable to walk straight--
The next day my GI called me to see how I was----I was normal--cus if things were the same he was going to have get to the ER room!!!

So Beth---there ya go----as we have said----*we all react so differently to meds*---
Do be careful and I will be watching the board to see what has been suggested to U--
luve Barbara

[Matthew]

Beth

I could not help but notice all the supplements you are taking

Right now I'm taking an SSRI, the occasional klonapin (1 mg) for sleeping, and about a million different supplements to help with the adrenal fatigue. (Multivitamin, fish oil, vitamin D, 5HTP, melatonin, kavinace, licorice root.)

Many of us have found that all those supplements that are supposed to do so much good really just make things worse. I tried lots of things in the first six months of my recover and each and everyone that I had such high hopes in resulted in worse D even though I was having some very good days. I was careful to check labels to make sure that their was No sugar, No starch, No Artificial color, No artificial flavors, No preservatives, No Corn, No yeast, No wheat, No grain, No eggs, and No milk products and they did me in each and every time. Even the Frieda Vitamins that are marketed as being free of all allergens resulted in D.

I have come to think of them as the supplement gremlins and still stay away from them.

I know you are concerned about the adrenal fatigue but I suspect that all the supplements you are taking for it are making the D worse which just makes the adrenal fatigue worse. I would address the D first.

Or at least that is my experience.

I hope others with the same experience will relate their similar experiences.

to Your Continued recovery.

Love

Matthew

[bobh]

... I know you are concerned about the adrenal fatigue but I suspect that all the supplements you are taking for it are making the D worse which just makes the adrenal fatigue worse.

And to add insult to injury, I took supplements for adrenal fatigue for years with no result. At 51 years of age - I finally bit the bullet, and am taking Cortef. (a prescription). I posted on that earlier, anyone interested, this Dr. Peatfield is the guru on Adrenals & Throid http://featherstone.bravehost.com/thyro ... renal.html

[bobh]

Hi Beth------
Pred. was on it(twice-at different times) and monitored by my GI----
He lowers the pred. very slowly----
30 mgs. first week ...

That is really interesting. When my doc started me on 60 for 2 days, then 50 for 2 days etc, it was like getting hit with a 2x4. I was kind of "manic", felt more energy than had for years, but pressure in the head, and kind of whacko.

It halted the flair "pronto" but I always wondered if I could have had the same result with a lesser dose. It seems someone had a post a while back where they had been put on a protocol of 20 mg Prednisone and it didn't stop the flair. Did the 30 mg halt your flair? If so, how long did it take?

[starfire]

Bob,

I'm not the person you are thinking of (about the 20 mg of pred not stopping a flare) but when I was originally diagnosed with MC my GI prescribed 20 mg of pred and a slow taper off (can't remember now what the schedule was but I was supposed to be on it for about a month, (I think). I had a little trouble (body aches, fever - no D) when I'd try to taper off so I ended up being on it about 3 months in all and before I went off he had me start the 9 mg daily of Entocort. I was on both for maybe 2 weeks. Smooth transition with no noticable side effects. I was then on the Entocort for about 3 months, but since I was also taking Asacol from the beginning (and still am), I don't know if 3 months would be long enough on Entocort alone. I doubt it.

We all react so differently to meds and everything else, it seems. It's almost impossible to know what will work for whom.

Beth, I pretty much agree with what Matthew said about all the supplements.

Love, Shirley

[Beth]

Hi again,

Matthew, that's interesting what you said about the supplements. So, do you not even take a multivitamin? I would be hesitant to stop taking this one simply because my diet is so limited right now and my body eliminating so quickly that I'm sure I'm not absorbing very many nutrients. Also, my naturopath said that the fish oil should help with the inflammation - thoughts on that? You're right, though - I really need to get the D under control before I do anything else. And Bob, I'm going to look into Cortef after I'm more stable in terms of my GI tract. I really appreciate your telling me about this.

Most of all, I need to get a better doctor. I'm simply amazed at how terrible my GP is. I talked to her yesterday, and she was angry at me for not taking the prednisone. When I explained that I could have overdosed from the steroids, she had nothing to say. I asked her to help me try to get in to see a GI at Mass General and she said that she had no connections with that particular hospital and that she couldn't promise anything - all in the snippiest of tones. So frustrating. As soon as I can switch on the 1st of the month, I'm getting a new doctor.

Joanna - you asked what I teach. I teach writing and the SAT privately, and I love it. Wonderful way to make my own schedule, help the kids in my area, and make enough money to have time to write.

Thanks, everyone, so much for your input. I so appreciate it.

Best,
Beth

[harvest_table]

Most of all, I need to get a better doctor. I'm simply amazed at how terrible my GP is. I talked to her yesterday, and she was angry at me for not taking the prednisone. When I explained that I could have overdosed from the steroids, she had nothing to say.

Beth,

I think you need to give that Doc a little more credit- wasn't she the one that you twisted her arm over the phone to give you a pred & entocort script, and she did against her better judgement but was open to you? If you just spoke to her and told her you could have overdosed from the steroids she must have been dumbfounded. I'm not surprised she had nothing to say. Why is it, that you think you may have overdosed?

There are alot of folks here with very differant experiences with medications good and bad and also other valuable research on the net about the may facets of MC.

Try contacting your local Chrons and Colitis group, or a Celiac group to find a GI experienced with gluten intolerance.

Hang in there.

Love,
Joanna

[MaggieRedwings]

Morning Beth,

I am in late on this but do have some input on the supplements. Being a vegan and intolerant to soy, I took a LOT of supplements. They absolutely did me more harm than good. Also, the binders in them need to be looked at long and hard. It is quite difficult to find ones that are totally GF. The Vitamin Shoppe Brand is one of the few I know. It seems that naturopaths (and I have used a couple for a long time - no longer do) can load them on. They do interact with each other and one I would definitely not take is Licorice Rooot. It is very fickle with one's system and any one of the ones you are taking could be causing the problem. I looked at your list and am wondering why so many for adrenal fatigue. It just sounds like you need to limit them but continue with the multivitamin. Just my 2 cents worth.

Love & Better Health, Maggie

[Beth]

Sorry, Joanna, but I'm having a hard time swallowing your advice that I need to give my doctor more credit. Yes, she did give me a script for the initial entocort and pred, but I strongly believe that she should have checked to see if there would be a problem to be on both at the same time. You asked why I thought I would have overdosed - well, I asked for advice here, and a number of people told me that GrannyH had nearly overdosed by doing the same thing. And it's not just the entocort/pred issue that has me troubled - there are a number of other interactions I've had with my doctor that have made me extremely uneasy and certain that I need to find a different doctor. I'm in a very vulnerable place right now physically, so I would ask that you refrain from judgment about my interactions with my doctor.

Thanks.

[Polly]

Hi Beth,

I know how frustrated and upset you are, and you have every reason to feel that way. MC is a rotten disease and the medical profession is often of little help.

Let me try to shed a little light here if I may. You will note that I was the first to respond to your original post, and that I (as a physician) said I thought it would be OK to take both prednisone and Entocort at the same time. It is often done. Usually the other way around, when someone has been on high doses of prednisone (even for long periods of time) and Entocort is added while the prednisone is tapered. You can check this out at:

www.astrazeneca.ca

On the left column on the home page, click on "Our Medicines". Then scroll down the list and click on "Entocort Capsules" Then read the top paragraph on p. 3 of the Product Monograph.

After my post, concerned members jumped in to let you know about grannyh's experience. It was certainly worrisome and something to be aware of, but her experience may be not at all applicable to you. I believe she may have been on the Entocort a lot longer. Also, she was probably taking various other meds (I think she has mentioned other health conditions in addition to the MC), may not metabolize medications as efficiency as you (she is older, I believe), she was gievn dexamethasone, not the prednisone dosepack, etc., etc., etc.

The major complication of taking both together would be adrenal suppression. The doctor can monitor for this and treat it if it should occur. But IMHO it would be unlikely to occur with such a short and tapering course of prenisone and the fact that you have not been on Entocort for long. I would imagine that any symptoms you might experience during the time of the prednisone treatment would be those listed in the above URL - or the ones that Bobh has mentioned. These, of course, are not any fun but should be shortlived. Of course, if you do not trust your GP to monitor you during this treatment, that is another issue.

Hang in there.

Love,

Polly

[bobh]

Hi Beth, ...I thought it would be OK to take both prednisone and Entocort at the same time. ...Love, Polly

Bob's 2 cents: If I was going through "Flair City" and it just kept going on & on, I would do it. Hell yes. That is going to calm down the inflammation, if nothing else has worked.

My only tweak would be to perhaps take less Pred than I did before - the 60 Mg may have been more than I needed (it worked over night). Others on this thread have gotten results on 30mg, and 20 mg, but perhaps over a longer period of time. I suppose you would have to reflect back on what happened the first 2 days you did Prednisone in December, and if you think a lesser dose would do the trick.

I think 40 might have done it for me... but if I didn't get relief after 2 days... I suppose rolling up to 50 for days then back down. Not that much different than 60 -> 50 -> 40 -> 30, then at 20mg introduce the Entocort. For me, if the flair was halted at that time, I know 2 Entocort a day would maintain it. If I was still having some symptoms, I would do 3 Entocort a day at that point.

[tex]

Bob,

I agree with you. Personally, I wouldn't have a problem with initiating a Prednisone course without a withdrawal period for budesonide, if it were done at the 40 mg level, rather than 60 mg. And, I don't see any reason why the budesonide couldn't be added back in when the Prednisone rate got down to the 20 mg level, as you mentioned.

Adding budesonide to the tail-end of a Prednisone course is routine stuff. The reverse situation, however, adding Prednisone to an existing budesonide course, is drifting into uncharted waters. In such a situation, I believe that it's prudent to trim the Prednisone rate a bit, to reflect the pre-existing accumulation of budesonide that's already in place.

Tex