Medication Decision to make, maybe

[Sue777]

You know those days when you just get so tired of the fight and it's exacerbated by lack of response or support from your GI's office that you just break down and cry? I'm having one of those days and I don't do that often so sorry to come here with my defeated attitude..... I won't let it last long - promise.

I started taking 3 mg of Entocort almost two weeks ago hoping to stop this flare but it's not working. In addition, I seem to be having side effects from even this small dose (anxiety, insomnia, palpitations, night sweats) and it's probably interfering with my thyroid meds, causing even MORE lousy symptoms.

I'm trying to decide what to try next: would there be any point in trying Asacol again? It worked wonders when I first was diagnosed, but last year when I tried again it made things worse. But my body has gone through a lot of changes since then, so maybe it would work this time again?

Or do I bite the bullet, try to deal with the side affects, and go up to 9 mg of Entocort for a while? Or, third choice, do I ask the doctor if there is another drug (besides Asacol and Entocort) that I could try?

Whenever I call the doc's office the girls tell me to get online and use their portal for questions and appointments and refills, etc. and it worked fine a few months ago, but I've now been waiting over a week for a reply. When I called today to ask if someone could provide answers, they insisted they answered via the portal. I kept stressing that I never got anything, and, well, you know the frustration. I'll try again tomorrow if I haven't seen anything but I'm too defeated and sick to fight with them right now.

Anyone ever had a bad experience with Asacol but then a good when if they tried again? I have plenty in my medicine cabinet and am tempted to try some tomorrow, I would probably know fairly quickly if it makes things worse, but do I need to be off the Entocort a while before I try Asacol?

I know none of us here can give medical advice but if you could share your opinions and thoughts I'd appreciate your input.

Thanks in advance.
Tired and Defeated

[Gabes-Apg]

Sue
how many BM's are you having per day?

The fatigue and the mood issues are very much linked to the inflammation. Reduce the inflammation, those symptoms get better.
taking medication may reduce the BM's per day, but if you are feeling poorly, and you are having side effects from the medications, why do that?

On medications the BM's are reduced, but you are not healing, so the fatigue, pain etc will most likely continue.
I understand that if the symptoms are so bad, and while you are sorting out your eating plan that taking medications helps during the transition.

in the same time span as trying medications and seeing if they work, a dedicated healing eating plan, and using Vit d3, magnesium etc will reduce inflammation and encourage healing.

[Sue777]

Hi there.
The number of times varies (depending on what I eat or don't eat) but it's probably between 7-10 per day. It's the suddenness and urgency that is the most disturbing (as you all know too well).

I don't think I'm in a "full flare" yet, or at least not as bad as I was when I was first diagnosed (at that point I couldn't even drink water without having to run) so at this point I am able to see what's bothering me and what's not. I've found two things today that actually stay with me so maybe I can get some nutrition and energy back.... a mouthful of peanut butter stayed with me and a handful of Life cereal is staying put.

I agree that learning the triggers is important, but I think meds are probably needed to soothe things enough for the inflammation to heal, too. I'm not liking the Entocort this time... really tempted to try Asacol tomorrow morning to see if it makes things worse or not. At least Asacol isn't listed as interfering with my thyroid meds.
Sue

[Gabes-Apg]

Sue
I have not done either medication so can not comment.

My understanding is any medications that MC'ers use, none of them actually heal the inflammation, they just slow motility so it is not D.

[tex]

Sue,

Sorry you're having a flare that doesn't want to respond to treatment, and communications problems with your GI doc's office to boot. The primary reason why Asacol (or any of the other mesalamine-based medications) cause some of us to become worse, rather than better, is because as Dr. Fine pointed out many years ago in an article that appeared in The New England Journal of Medicine, mesalamine is a derivative of salicylic acid, and because of that, most people who have an IBD, and who react to NSAIDS, will experience increased inflammation and D if they take mesalamine, due to increased leukotriene production.

Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.

Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis

IOW, you may not have been sensitive to NSAIDs originally, but it appears that you may have developed a sensitivity by the time you tried Asacol a second time.

Regarding your communications with your GI doc's office, if emails are involved, check your spam filter. Your service provider may have changed the spam filter settings and/or a link or something else in the emails caused the spam filter to reject the emails. If you have a spam filter set up on your own email client (on your computer), the emails also might have been side-tracked there.

I'm afraid the only other practical alternative treatment appears to be Uceris, which is a relatively new form of budesonide that becomes activated only in the colon, thereby (theoretically at least) eliminating the risk of most common corticosteroid side effects.

To answer your question:

but do I need to be off the Entocort a while before I try Asacol?

No, you can take the two together without any interaction risks. The problem is that if one of them causes your symptoms to become worse, then the other will not be able to overcome that issue.

Tex

[nerdhume]

Sue, it's frustrating when we don't feel well and don't know what to do. More so when our GI won't listen/help. I tried Lialda and it made me worse.
I was on Uceris for about 2 months. It stopped the D from the very first day. I really didn't notice many side effects, hard to tell since UC causes a lot of symptoms anyway. When I went off it the GI said just stop, and I had some 'flu-like symptoms for a couple of days, then I was in remission.
Maybe try the enterolab test to see what you may have become reactive to.

[Sue777]

Thanks, Tex..... you are always there with the compassion, research data, links, and practical advice. Don't know where we'd be without you and I know I speak for all when I say we don't want to try it!

I check my SPAM filters twice a day so I know it's not in there. I got a note through the "Portal" this morning saying that she is discussing my questions with the doctor and will get back to me so I don't know what was broken before or how or why it got fixed, just glad it did. If by some miracle I actually get to SPEAK to the doctor, I will ask him about Uceris.

I could very well have developed an allergy to Asacol, but it could also have been that my thyroid was bonkers at that point and I had surgery shortly thereafter to remove it. Who knows... maybe without a thyroid I wouldn't have a bad reaction to Asacol...stranger things have happened. (shrug)

Thanks, Theresa, for understanding the frustration and for sharing your experience with Uceris. Glad to hear it worked for you and hope it continues to!

Sue