Elmiron Installs ?'s

[RAS6]

I tried several rescue treatment cocktails and DSMO in the past and I didn't have much luck so I stopped installs. I also took Elmiron orally at quite large doses for 10 months with no results and lots of bad side affects. I have been on drugs mainly just for my pain the past 6 months.
I just had a second hydro distention last week and found that my IC has progressed. My capacity is smaller (not sure the actual numbers yet) and I have several spots of inflammation, but my Doctor said they are not deep enough to be considered Hunner's Ulcers.
Anyways if I am not feeling better when I see him in three weeks he wants to try Elmiron installs. I would mix them and do them at home b/c it is cheaper to mix it myself and there are no compounding pharmacies near me. Also I can't drive to his office to get them b/c it is 2 hours away. If they are helpful I am willing to go to all the trouble. My insurance will NOT cover Elmiron, so I have to apply for the reduced drug program too which is another reason why I would have to mix them at home.

So all this said, I was wondering if anyone with bladder inflamation and/or hunner's Ulcers have had sucess with Elmiron installs even if it didn't help orally. Also, does Elmiron Installs have potential for side affects like the Oral Elmiron; ie. hair loss, vomiting?

Thanks everyone!

[gigisgirl]

Hi
I have had Elmiron instilled in my bladder. I didn't have any real bad side effects, it made my pee smell really bad and kinda gave me diarrhea (I have IBS already). But I also didn't notice any effect on my IC so I haven't been getting the instills as much any more. I did try Elmiron orally and had a horrible time with the GI effects so I discontinued it.

[kdw]

I had 6 Elmiron instillations, each a week apart, about a year ago. I was having a pretty bad flare, and the instills seemed to help. The only side effect I experienced was feeling dizzy while the Elmiron was in my bladder. It seemed to subside after voiding it all. Sometimes it took a couple of hours before I could urinate without having to strain. The doctor said it was due to the instillation cocktail being thicker (as compared to the DMSO treatments I received in the past). My husband appreciated the Elmiron instills over the DMSO ones because I didn't have an odor afterwards.

I can't comment on the difference between oral and instilled Elmiron as I never tried Elmiron orally.

Hope this info is helpful.

[Kathy in Canada]

Hi,

Elmiron instills help me. I do them myself weekly.

In a new sterile urine bottle I put: 20 ml of sterile water for irrigation, empty out 2 Elmiron capsules into it, add 12 cc of 2% lidocaine for injection, and then add 6 cc of 8.4 % sodium bicarbonate for injection. This is swished around and then drawn up into a 60 ml syringe with a funnel tip. I pull the plunger back about to the 10 ml line to add a bit of air to clear the catheter. After catherizing (catheter with funnel end) myself, let any urine drain out into the urine bottle, then I attach the large syringe to the catheter and put the mixture into my bladder. Sometimes the syringe needs to be wiggled a little as the Elmiron gets stuck near the rim of the syringe. When the instillation and air are in I remove the catheter and syringe together, so the instillation does not go back out the catheter.

I don't re-use any of the equipmentl. 10 ml syringes with needles are used to draw up the lidocaine and sodium bicarbonate. I use separate needles & syringes for each.

Kathy