Question, Allergy or Side Effect & Med. Coding Issues

[katinchatt]

Greetings Everyone,


Help me wrap my head around how Entocort can mask food intolerances, and how those with intolerances can eat almost anything with no adverse effects? The underlying intolerances continue, doesn't the body still recognize these reactive foods? Does Entocort reduce the symptoms, the intolerance itself, or both. What other meds also have this as a "beneficial side effect?........I'm asking because, see below

Wondering about Entocort side effects - (sigh) - Day 10 now, and I'm beginning to itch like crazy, I don't know if it's worth adding Benadryl to my regimen, hard to say if it's a simple side effect, or an allergic reaction. I would think after 10 days I would know if I was truly allergic to it . . . tho, I don't know for sure. Also, in the afternoons I'm beginning to get a vague headache << I can live with that.

Anyway, I'm totally bummed because I've been making great progress. Have lowered my Lomotil to 2x day, Librax as needed for cramping. I have a prescription to Colazal, would I need to taper off for a couple of days if I decide to switch?

I don't think I like being coded as having Crohn's. (555.1) . . . . of large intestine (regional colitis);
I know, and you know that's not the case, but future implications especially the Cancer association would be risky, to say the least, if I were to switch insurance companies. Or is there no discrimination involved, and it's simply a pre-existing condition? << This may be a ridiculous question as I'm sure there is discrimination, but I "we" could be denied due to being coded to a disease directly related to cancer. It's my understanding that certain drugs can only be prescribed and approved by some insurance companies when the diagnosis is within a specific disease and coded as such. Still, I'm not sure I like this code - we need our own!

itch, itch, scratch, scratch,


I'm sorry if my post sounds "bitchy" ~ I just re-read it and want to apologize if I came off that way. I'm just going a tad crazy today, with all this itching. I did take a Zyrtec (sp?) and it has helped. Also, tomorrow I go to yet another Doctor for my 3 month Thyroid/Nodule check-up (I'm just sick and tired, of being sick and tired, & now itchy too).

[tex]

Kat,

Help me wrap my head around how Entocort can mask food intolerances, and how those with intolerances can eat almost anything with no adverse effects? The underlying intolerances continue, doesn't the body still recognize these reactive foods? Does Entocort reduce the symptoms, the intolerance itself, or both. What other meds also have this as a "beneficial side effect?........I'm asking because, see below

Budesonide, like the other glucocorticosteroids, has a high local anti-inflammatory effect. Glucocorticoids, (corticosteroids), are anti-inflammatory and immunosuppressive drugs that are used in a variety of autoimmune diseases. They work in a variety of ways, but the main mode of action seems to be inhibition of transcription of the genes for cyclooxygenase-2, cytokines, cell adhesion molecules and the inducible form of nitric oxide synthase. Don't ask me what that means, 'cause molecular biology ain't my strong suit. Presumably, budesonide has no mechanism to reduce the underlying intolerances, but the expression of those intolerances is modulated by both the suppression of inflammation, and the suppression of the immune system itself. Therefore, it would appear that the symptoms are reduced, but not the intolerances

As to other meds - any of the corticosteroids will suppress inflammation, (and simultaneously suppress the immune system), but budesonide is by far the safest, with regards to side effects, particularly undesirable suppression of the hypothalmic - pituitary - adrenal complex. There are quite a few immune system suppressants, such as Remicade, Embrel, Imuran, cyclosporin, etc. Most of these immune system suppressants were developed for use in organ transplants, and they are pretty "big guns", as far as treating MC is concerned, with significant associated risks. One of our members, at her doctor's recommendation, has just completed a year-long treatment using Imuran, (azathioprine), but unfortunately, it did not resolve her symptoms.

As far as I'm aware, there are no drugs specifically labeled for MC. (Someone please correct me if I'm wrong about that). Therefore, if a doctor is going to prescribe a med for MC, it will have to be "off-label", by default. Also, remember that many meds are prescribed for MC because of their side-effects, (most notably, constipation). I know nothing about insurance companies' handling of issues such as this.

There are no "easy" solutions. MC can be very stubborn, when it wants to be, and it usually wants to be.

Here's the bad news, though - any way I look at it, I have to interpret itching as one of the adverse reactions classified as an "allergic" reaction, and as such, it is one of the side effects that falls into the category that demands prompt attention, or at least consultation with your doctor:

Seek medical attention right away if any of these SEVERE side effects occur when using Budesonide Sustained-Release Capsules:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); acne; change in mood or behavior; chest pain; confusion; severe headache; sudden increase in weight; swelling of the ankles; unusual bruising; vision changes.

http://www.drugs.com/sfx/budesonide-side-effects.html

I'm pretty sure that your doctor will advise you to stop taking it.

Tex

P S It never occurred to me that your post might sound "bitchy", but I have to admit that it did sound "itchy".

[katinchatt]

Thanks Tex,

Yep, I'm pretty sure I should stop taking it as well. Still, I'm extremely disappointed, I felt as though it was my ticket. I'll wait a couple of days and start myself on the Colazal. No need to call the Doc, he gave me the script last week.

And thanks again for the explanation above, it does help me understand how that all works, as far as the "masking" of symptoms.

Don't ask me what that means, 'cause molecular biology ain't my strong suit.

. . . it sure sounded convincing anyway.

As far as the medical coding, that was in reference to having that actual Code as my diagnosis. This will be in my "permanent" medical file/history. It doesn't matter now, but in the future it could cause problems. Personally I just feel we shouldn't be classified as having Crohn's. IBD yes, however we shouldn't be linked indefinitely to having a higher risk of cancer, that's all.

[tex]

Kat,

I forgot to mention - a lot of GI docs prescribe one of the 5-ASA meds right along with Entocort, so I see no reason why you can't begin taking the Colazal immediately.

As far as the medical coding, that was in reference to having that actual Code as my diagnosis. This will be in my "permanent" medical file/history.

I think the problem with the diagnostic code is the usual one - MC has nothing of it's own, so it has to "survive" on hand-me-downs. There is no diagnostic code that fits MC, so it gets the 555.1 code by default. I agree with you, that classification shouldn't be used for MC, but unfortunately, it's the closest fit. The implications don't look good, because despite what the code infers, MC does not present as granulomatous, regional, or transmural, (while Crohn's does, of course).

Tex

[JLH]

I think mine was coded UC.

[katinchatt]

Hi,

I took 2 Entocort this morning, I'm attempting a little test. It's been so dry around here, since we've only been using heat for about a week now, it may be my environment. I should know within a day or so if my test is successful or not.

[katinchatt]

Hi,

Day 2 on 2 Entocort...I was suspecting that it is my environment that was causing my itching, for the most part. Yesterday on 2, and then taking additional steps to eliminate a few other suspect culprits, I didn't itch at all. No additional D, and took 3 Lomotil. My gut has been a tad louder over the past 24 hours, but nothing extraordinary. So, I'm sticking with 2 today, and will up it back to 3 tomorrow.

Just took a little "tested reasoning" and the power of suggestion (as in yawning) played a huge role, I think. Once the thought was there, well, I couldn't help but itch. Hopefully I have eliminated all the known causes. A few weeks back when I was on the 9-Peptos, 6-8 Lomotil and 4 Librax it took a HUGE toll on my skin. I was a dried out prune, so I went and found some Industrial Strength lotions, which I think I over-did. Tomorrow I should know if it's truly the Entocort, I'm still in high hopes it's not.

Since I've only been on Entocort for approx. 2 weeks, if I stick with 2 a day instead of 3, will I just be prolonging my progress? At this point in time I base progress on how many Lomotil I need to get through the day, it's all I have to judge with, and my gut decides when I need to take one. Progress is being made, I am now the proud owner of just 1-D a day <<<< just like the good old days though not a Norman, it's not pure liquid either.

[tex]

Hi Kat,

Apparently, when I read your original post, my brain registered "rash", when I read "itch". Obviously, they may be related, but are not interchangeable terms. It's a good thing that you have an open mind, because, as you say, we may have condemned Entocort prematurely. We've probably all seen times when dry skin, especially during wintertime conditions, can lead to intense itching.

Response to budesonide, (like a lot of drugs), seems to be dose-dependent, that is, the higher the dose, the more intense the response, (and/or the shorter the recovery period). I don't recall seeing any trials for Entocort with a starting dose of 6 mg a day, (that's normally considered to be a maintenance dose), but that doesn't mean that it will not eventually bring remission. Normally, a dose of 9 mg per day will bring remission to approximately 60% of patients, whereas 18 mg, (an off-label dose), will bring remission to about 75% of patients. Therefore, a WAEG might suggest that at least 50% of patients might see remission with a 6 mg dose. Most trials are usually for about 8 weeks, I believe, and obviously, the higher doses will bring remission to some patients much sooner.

You didn't say how much Lomotil you are currently taking, but it sounds like you're making very good progress, already, so you may not need to up the dosage of Entocort. An important gauge is how you're feeling, in general - much better, I hope.

Incidentally, I've been meaning to mention, (but keep forgetting), I like that new tag line.

Tex

[katinchatt]

Howdy Tex,

Until yesterday I was only taking 2 Lomotil per day, and 1 or 2 Librax as needed for cramping. Yesterday I began taking 3 Lomotil throughout the day, for a little insurance. So far so good on the 2 Entocort (as far as itching). I'll know tomorrow when I take 3. Also, I haven't that vague afternoon headache. Clearly I would rather tolerate 3, but will be satisfied with 2 over a longer period of time. Yes, I almost feel normal. A few weeks back I didn't think I even remembered what that felt like, but it's still there, just in time for the holidays ;)

Out in cyber-space, I found another Newbie with MC, wondering about all alone. Her name is Marla, and I invited her to join us. I hope she takes me up on it, as she needs guidance. Her Doc just sent her out with no explanation, and told her take 4 Pepto per day, << nothing new - but what the heck does he hope to accomplish with 4? I'm not sure, but I don't even think that he told her which form she has. Not that it matters at this point, but who knows in the future there may be specific treatments for each one . . . . however, we won't hold our breath.


Marla, are you here? I hope you find us.... ;)

Tag line - Yes, those younger, thinner, faster Chicks just better keep their distance

[katinchatt]

It's a good thing that you have an open mind . . .

Tex:
While I've been accused more than once in my life as not being so open minded, I have to say that it has been a recent side effect of MC. I think we all have to be extremely open minded, or we'll just run in circles. That's was so facinating about this disease, each and everyone of us has a different story, wellness program and means to an end~Remission. With meds, intolerances, GI accountability, and diets, we are in fact, as a group, one big open-mind.

Thinking outside the box is a good thing!

Yea, Marla (marmiran23) you found us! ~

[tex]

While I've been accused more than once in my life as not being so open minded, I have to say that it has been a recent side effect of MC. I think we all have to be extremely open minded, or we'll just run in circles. That's was so facinating about this disease, each and everyone of us has a different story, wellness program and means to an end~Remission. With meds, intolerances, GI accountability, and diets, we are in fact, as a group, one big open-mind.

Thinking outside the box is a good thing!

Exactly! With this disease, you either have to be willing to try things that your doctor may tell you can't possibly work, or you end up suffering needlessly, for a lot longer than necessary. The trick with MC, is to get to remission in any way you can, and then fine-tune the details later, when you're feeling better, and able to think more clearly. You can't do that, unless you're willing to think outside the box.

Tex

[katinchatt]

Thank goodness I didn't give in to my itches! It wasn't the Entocort after all. Back on 3 per day as of yesterday and I'm fine and dandy. My heated-dry home is the culprit.

Have a great weekend!
Kat

[tex]

Tex