Elmeron Instillations

[soccermom32]

I have 2 bladder instillation treatments next week, 2 the following week and then once a week for 4 weeks.

I know its elmeron and a numbing agent.

I've read some negatives about it and I'm scared. My doctor assures me its necessary for my recovery though.

What do you all think?

[mellusk]

What exactly were the specific negatives you've found?

Most any medication will have side effects, however, I've been on elmiron orally for a little over a month and I haven't lost any hair, had diarrhea, or anything else like that so far. So far I'm not planning on receiving any intillations, but diet and some other lifestyle changes have made the biggest difference for me.

[hoping4acure]

Hi Mellusk! I used to get them all the time, sometimes 3 a week. It was Elmiron, Lidocaine (numbing agent) & sodium bicarbonate. They worked wonders for me. The only thing I had to used to was the catheter. It's worth a try.

Good Luck...I hope it works as well for you as it did for me.

[soccermom32]

The negatives I found were actually on this board. I guess there is an instillation thread I stumbled upon. Some people said they would get infections, would have retention and be unable to urinate for some time after, more discomfort coming out then going in. Things like that.

Maybe it wasn't Elmiron, lydocaine and sodium instillation I was reading about?? Are there several instillation treatments?

[Kathy in Canada]

Elmiron instillations

Hi,

It is good that your doctor is forward thinking enough to give you instillations of Elmiron until the oral Elmiron starts to work. It can also be used for flares of IC symptoms.

I have had instillations of Elmiron, 2% Lidocaine, Sodium Bicarbonate and Sterile Water. They were done at the dr's office multiple times per week during the first few weeks after I was diagnosed with IC. I am doing them on an as needed basis myself at home now. I don't live anywhere near the doctor.

I don't find the catheter going in very uncomfortable because it is lubricated. When the solution is in my bladder it feels good because the Lidocaine numbs my bladder. I thought the first one was wonderful when it was in - no bladder pain. After getting a number in a week my urethra got a bit sore from the catheters. At the doctor's office I had them put some Lidocaine jelly in with a syringe after the Elmiron solution was in, to numb my urethra some.

You have to keep the solution in your bladder for at least an hour. I do find my urethra somewhat sore after I urinate it out. If you feel like you are passing some gas from your urethra when you urinate out the Elmiron solution, don't worry about it. This is just from some air going into your bladder from the syringe when the solution was instilled. I take something for urethral pain if I need it afterwards. It is a good idea to rinse off your vulva with some water after you urinate out the solution in case it irritates that area.

I also am taking oral Elmiron, which as you may know can take 3-6 months to work in the patients that it works for.

I have not had any infections from the instillations. I also have not had any side effects from the Elmiron yet. If the Elmiron gives you nausea you can empty the capsule contents into a small amount of water and drink it. I also add some more water to the glass after to make sure I get it all. The capsule is what is supposed to cause the nausea.

Good luck with your treatment. I know the Elmiron is helping me.

Kathy

[Big Red]

I have never had elmiron installations but know a lady at my parents church that gets them and she says they have helped. You told me I should ask my doc. about them but I forgot. He ordered enough other things to try for a while. Like to know how they do for you. I take oral elmiron. I could use something to take some pain away. I am in a long flare and about ready to just give up.