Help! How many days of relief from instills?!!

[rosesitty]

Hey ladies -
On the average, how many days of relief do you get from rescue (heparin) instillations? I've gotten one a week for the past nine weeks, but my uro seemed to think that was a lot. I'm having them done at the docs office.
Also, do you wait until you have symptoms again to get another instill or do you keep doing them to keep the symptoms at bay?
My discomfort (urgency) and urethral pain seems to be different the past week, from the preceding nine. Deep and consistent, like it's become chronic.
Thanks for all your help!
Rose

[Katrina]

I started at one a week...than upped to twice a week but my urethra wasn't agreeing with the idea so now I no longer take them to keep it at bay but when I flare only. I don't think it is that unusual to need one a week.

Are you doing any other treatments? They are helpful in keeping symptoms at bay but it can get to be to much for the urethra.

Remember that instillations can increase the possibility of an infection...sometimes with IC we forget that we can still get bacteria infections too.
:grouphug:

[kadi]

I have them 3x a week. More often if flaring.
If I temporarily stop them (due to period or if I have the runs), I'm okay for about 5 or 6 days. The doctor says they should last longer than that. It's hard for me to know though, because the reason I stopped them could be why too.

Hope that answered your question.

[rosesitty]

Hi Katrina - Prior to this recent flare (two months and counting), I was only averaging an instill a month - at the most. During the past three years, I had two 6+ month remissions and one 3+ month remissions. During this flare-filled two months, I have averaged one a week. I had good success before, now only moderate, if that, success. I feel a bit better for a few days, and then wait the rest of the week until I can get in. I am taking Atarax 25 mg at night, Sanctura (as needed), Urelle 2x per day, Calcium Citrate, Marshmallow Root Tea and Tums (as needed). I have also fully adopted the IC Diet. Not much is helping at this point, and it seems to be getting worse. Prior to this flare I could pretty much eat whatever I wanted - I just had to watch the diet pop and caffeine. My uro just put me on Elmiron (first time) for a three month stint, but I temporarily stopped taking it because it was causing some significant gastro symptoms and I was going to Disneyland on 1/24. Didn't want to worry about gastro AND uro! So, I'll start again when I get home. My symptoms currently switch back and forth from urethral pain to that nagging feeling of urgency. I didn't think it was that unusual to need one a week, but my uro seemed like it was ALOT. Perhaps she comparing to when I only needed them once a month, who knows. Thanks for your help!
Rose