chronic illness

Trouble for those with IC

Last August I took a trip to the Duke Endo Center and the best thing to come out of that visit was my IC diagnosis. Since starting treatment, I have experienced a significant drop in my pelvic pain. However, there is now a nationwide shortage on Elmiron which is used to treat IC. I tried to get my prescription refilled yesterday and was informed that it would be at least mid-August before the manufacturer would be able to fill orders. Three months without medication. As many as 8 million people in the US suffer with IC and with Elmiron being the most prevalent treatment, there are going to be a lot of people dealing with pain and three months may feel like an eternity.

The following is the statement from the manufacturer:

Ortho-McNeil-Janssen Pharmaceuticals Inc., would like to provide you with a product availability update for ELMIRON® (pentosan polysulfate sodium) 100-mg capsules. ELMIRON® will be on temporary supply shortage, which has begun impacting availability at retail pharmacies. We anticipate the shortage could last for several months. Therefore, healthcare professionals should plan individual patient treatment accordingly.

We have communicated the supply shortage to FDA. Please be assured that we are doing everything possible to resolve this situation and re-establish supply to our patients as quickly as possible.

If you or your patients have any questions, please contact the Customer Communications Center at 1-800-526-7736. Patients can also visit our Web site at


If I ever needed motivation to stick to the IC diet, it will be now. I’ve got enough pills if I lower my dose to last me the rest of the week but I am worried for the weeks following. Elmiron does a really good job of keeping my pelvic pain manageable and without it, the pain is unbearable and makes it really hard to function. My pharmacy is still working to locate some locally and I’ve got a call into my doctor to talk about substitutions so I’m holding my breathe hoping for good news.

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2 comments on “Trouble for those with IC

  1. adventuresindinner says:

    This is a crime. An utter crime. You finally find something that gives you some blessed relief and…

    You’re in my prayers.

  2. Jennifer says:

    Nooooooooooo! Not ok!

    Hope you have a really good heating pad & some other pain meds, at the bare minimum. So sorry!!


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