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New Guy

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  • New Guy


    Not only can men hac IC, but in my case also having BPH adds another level
    of agony.

    I've had IC for at over a decade. I don't remember exactly when urologist #1 recommended Prelief for what he told me was liikely IC in addition to BPH. It helped. But as the prostate grew and inhibited emptying the IC got worse and worse. Burning, aching, urgency, sleeping 1-2 hrs at a time at night. Occasionally I'd do searches for new IC treatments or hopefully Cures! Then I saw Elmiron as a treatment online. Does anyone know when it was approved? I believe that is when I started on it. It was as close to a miracle as anything can be! Still I ended up having a TURP for the prostrate, but with the elmiron life was pretty good.

    Until recently

    In about May '11 a "flare" started. (I've just considered them "attacks" until I saw the "flare" term). It's been constant since then. Urologist #2 (#1 retired) did a cystocopy and my prostate had about closed me up again. May 26 was surgery #2, green lasering of the prostate. I could empty better, but guess what, IC doesn't like it when you burn it. I went into retension after my surgery. That wasn't one of the listed complications of the surgery.I have a nice supply of LoFric intermittent catheters at home now. Those are THE BEST if you need to do that sort of thing.

    The swelling has gone down but the pain remains regardless of the elmiron(I'm off the catheters). I decided I should join this forum after reading about the elmiron shortage and more importantly the stories of people who recently have found their elmiron doesn't work (like I did).

    My last Rx was from 5/07/11. Coincidence? I think not. That's when my flare started. I'm waiting for an email from my long term pharmacy regarding when they might be able to ship a new improved batch to me.

    As a test I've started on a smal emergency supply of elmiron (20 caps) I have from 7/2010. I've only taken 1 so far (today), but I beleive the pain is already duller. Time will tell, but even if this helps I may want to hold onto a stash the good batch until Ortho gets it right.

    I'm just not buying the story that Ortho didn't ship out any junk.

    My best wishes to all IC sufferers, and here's hoping for a quick return of good Elmiron!

    One more thing I've noticed since this latest flare / elmiron difficulty is that combining a "bad" elmiron with 3 200mg Ibuprofen works well for a number of hours. The improvement is quite noticeable!
    Last edited by IC4MEN2; 07-14-2011, 06:32 AM.