Steady As She Goes

I would never have imagined a year ago that the decision to hold my meds right where they are, instead of trying to reduce them, would be a relief to me.

Well, that was a year ago.

After six weeks or so back on budesonide twice daily, and a very welcome end to the symptoms that had been creeping back with a single daily dose, Dr. Eos and I have decided just to hang out here for a while. And that’s more than fine with me.

When I first started out on this journey, it was my ambition to avoid medication to the extent possible. To my mind, that meant avoiding it at pretty much all costs.

Maybe it’s that I like doing things the hard way. When Dr. Eos said, “Most adults find it difficult to maintain a strict elimination diet,” I seized immediately on the word “most,” and assumed that I’d be the one to conquer.

Maybe it’s my inclination to believe that most meds have more side effects, both known and yet-to-be-recognized, than we’d like to acknowledge. And that, even without side effects, they tend to mask the root cause of a problem, which, of course, would be the best thing to get at. I’m grateful that if my doctors think I’m a wacko, they don’t generally let on.

But, mostly, it was that I had never even entertained the idea that my exploratory visit to the allergist would make it look as though I had tangled with a swarm of mosquitoes and lost. Badly.

It’s not that I don’t think still about whether an exploration of diet might be worthwhile. I haven’t even shed all suspicion of the budesonide, and am just glad that I got to drop the PPIs which really made me wary. But the multiple positives for potential allergens, along with my Dad’s declining health last year, took all the wind out of my sails. Dairy I’ve already eliminated. Eggs in most forms. But the wheat, I think, would totally tip me over the edge, even if the rice, corn, apples, meats and everything else turned out to be non-issues. So, until the wind picks up again, it’s steady as she goes.

Now I wonder if I’ll find myself ever taking the plunge, or if I’ll get so comfortable with my steroids that I won’t even bother. There’s so little known about how these eosinophilic diseases evolve over time. Will my EGIDs always be with me? Will I still be around when something better comes along? Or will I one day retrieve my resolve and see if it’s my diet that’s making me sick?

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About eosgirl

Trying to stop worrying and love my eosinophilic gastrointestinal disease.
This entry was posted in Allergies, Budesonide, Case of EosGirl, Medications and tagged , , , . Bookmark the permalink.

5 Responses to Steady As She Goes

  1. Helen Love says:

    Good for you. Do what is best for you. We’ve been struggling for the past 2 years with trying to find the trigger for my son, and it isn’t working. We’re gonna try to address his airborne allergies and see if that helps. Unfortunately flovent caused him thrush. Did you try flovent?

    • eosgirl says:

      No, no Flovent. I’ve been on a nicely compounded budesonide for swallowing symptoms and GI symptoms. I believe that’s Pulmicort, and it’s been working pretty well for me without much by way of side effects. Until possibly recently, environmental allergies haven’t been much of an issue for me; still not sure what’s been going on recently.

      I hope you have good luck with your new approach. I’m in awe of you and all the moms out there (and dads) coping with this for your kids. I’d rather it be me any day, and not my son.

    • We had recently moved and our new allergist had suggested airborne allergens were the cause of our oldest sons EoE. We tried a new type of blood test and he was scoped. At the time his seasonal allergies were at a peek, so high his asthma was occurring daily. His environmental allergies are basically everything outside including animals, molds and dust. His scope during that time = clean. So I have doubts with the thought of environmental allergens being the cause FOR US. I also just recently learned that if EoE is in your genes you don’t necessarily have a trigger. That’s only something I’ve heard. I am looking for the document to back it up.

  2. Heather says:

    Researching alternatives to prednisone and budesonide and found mention here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2569760/?page=3 of successful remission of EG in a few individuals on asthma medications, montelukast and omalizumab. If only they had tried it in more than a few individuals… I’m thinking of asking my doctors about trying it for my EG. After some more research to be sure it’s safer than prednisone, of course, though most drugs probably are?

    • eosgirl says:

      I’ve seen some of those studies. You should definitely ask! There’s safe for long-term use, and then there are side effects. I gave montelukast a try for asthma and was back off it again within a month because of the side effects. Bleh.

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