IC Journey

I Said I’d Be Honest

Posted in Uncategorized by LJ Johnson on April 22, 2010

So I will be. I am STILL so tempted by the diet switch, especially with the promised “there is no way you can even eat 1000 calories a day on nothing but greens, all the watermelon you can eat at breakfast and a handful of nuts every third day.” I mean, come on, I’m over 40, have been sick for over a year (so not as active) and am on THREE medications which cause weight gain (and one that causes very frustrating carbohydrate cravings, just for good measure).

What person wouldn’t want to abandon all those evil “poisonous” drugs AND also be guaranteed a diet that will put them at 20% under suggested weight within about six months? Especially when the person pushing it tells you she has enough energy to work 60 hours a week on TOP of her activities promoting her diet ideas, feels better than she has her entire life after having multiple chronic illnesses and has HAD the illness (okay maybe more than one of them) that you have?

I’m even considering trying Elmiron orally, even after I had a bad reaction to it as an instill. I don’t want to – for one, I ended up with an itchy rash, and really suspect that wasn’t a good thing. For another, the side effect profile scares me, especially since, unlike another drug I did ages ago with similar side effects, it doesn’t promise they’ll go away in a few weeks or so (the previous drug that had a hair loss side effect also had the hair grow back in after falling out, even if you continued the drug, though it usually grows back curly), but, rather, that the side effects will go away when you quit the drug.

This is a chronic illness, people. That means “forever,” (though there are cases of people improving enough to slowly reduce the dosages over time) so that means you don’t actually usually get to quit the drug! My best friend, though, a Type I diabetic, when I balked at trying it orally after the bad instill reaction to it said that if it were a pill that made her bald she would do it rather than have diabetes and its resulting complications over time. She said, “Is it so bad to have patches of hair missing (nothing like looking like an animal with mange) if it means the rest of your life is normal again?”

That’s a hard one for me. Isn’t that SAD? You’d think it would be an easy choice. However, my hair is waist-length, never dyed, never permed – no chemicals whatsoever. Further, it is spoiled rotten as hair goes, never blown dry, curled with curling irons, etc. Seriously virgin, shiny, beautiful hair. Do you know how many years it will take to grow in a bald spot to match waist-length hair? Worse, it never got long or stayed long until it did a sudden nine-inch growth spurt during my pregnancy with my son 12 years ago. I have a terrible time getting through the “awkward stage” of growing my hair out, and have always wanted to have it this way. Spent almost 25 years of my life almost getting it long, then cutting it all back off to a page boy or shorter. Worse, it’s this stubborn hair that doesn’t hold a curl or style, so short doesn’t really work well for it. I end up looking like a shaggy dog most the time.

I actually get rather angry at the makers of Elmiron. The original studies for FDA approval demonstrated a success rate that was around 10% higher than placebo – hardly a really glowing recommendation. Since approval, the FDA has actually sent them letters telling them to correct some of their misleading marketing statements. Their newest one is NOT a lie, however it relies on open label rather than double-blind studies and FURTHER also relies on a questionnaire to IC patients. The new marketing literature says “more than 50% of patients who tried Elmiron experienced relief” (this is from an open label study, so people who would be helped by placebo get to be included in the “helped” count -further, they didn’t require an absence of symptoms, just any improvement of any of them), and that “most IC patients say they would recommend another IC patient try Elmiron.” Of COURSE we would. We know that every single treatment out there only helps between 30 and 40% of IC patients on average, and what doesn’t work for us won’t necessarily not work for someone else! The LAST thing we would do would be suggest that another IC patient NOT try something, especially if there is ANY hope of it improving their lives!

Yeah, I know they have to pay for their research, drug marketing and launch materials (not to mention the money for their drug reps, manufacturers, blah blah blah), SOMEHOW, but that, and the fact that, since it doesn’t help everyone they are now doing new trials and/or recommending two and three times the original studied amount for longer periods, instructing doctors to double and triple the dosage and encourage the patient to try it for up to a year in case they don’t respond to it more quickly, assuring that that patient’s body might just “need a little more time.”

And why do doctors even fall for that in the first place??? Granted, the anesthesiology resident who was spending a day visiting at my PCP’s office the other day said something that really put that into place for me: “Urologists get frustrated with IC patients because it is hard to have a patient that never gets well.” I never thought about it that way – talk about lack of job satisfaction. At the same time, as a patient, I don’t care that it takes us ten or fifteen tries to find something that works, just so the doctor remains open-minded enough to try something else instead of shrugging their shoulders and saying, “Well that’s all I got.”

So now I’m weighing – what is better – trying a drug I already had a reaction with when I didn’t even ingest it? (the urologist is assuring me that just because I had itching, inflammation and burning after it contacting my skin doesn’t mean I would have those problems after I swallow it) or do I try a diet which, on its surface, looks just as (or more dangerous) than giving that drug another try?

Why is the diet idea just not quite as scary?


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: