Elmiron Instills

[Jenny76]

Hello,

I had my first Elmiron Instill today and I am flaring BAD today b/c of it. I am scheduled for 2 more this week. The doctor says it will take a few before I would notice any improvement. Anyone have any success with Elmiron Instills and is it normal to flare b/c of it?

[soccermom32]

I LOVE Elmiron instills. I hated then when I first started getting them - and yes, it would make me flare. I have had 28 instills since March, that is how great they are for me.

I believe the instills contributed in a big way to help heal my bladder. I rarely have problems with my bladder anymore and eat and drink whatever I want.

I do have issues with PFD when my stress level gets too high which is why I'm still hanging out here. ;)

[Jenny76]

How long did it take before you noticed improvement? I will be having my third in Friday.

[Vicki]

Curious as to what your doctor's formulas are for the Elmiron instills. Are they putting steroids and lidocaine in with the Elmiron and Saline? Also, my doc suggested I do them twice a day. Is anyone else doing this? -Vicki

[born2swim]

Well, I had 3 instills the first week then weekly for over 2 months. They didn't help me unfortunately. The problem with me doing instills is that my urethra is so tender and having a cath (even a pediatric one) is very painful. So, the whole day after the instill is torture. It didn't send me into a flare, but my urethra was so tender and painful that it hurt to void for the first 8 hours or so.

I'd say give it time though. You know how you get a blister and everything that touches it burns it... well after some time, as it heals, it improves and contact is less painful. If the Elmiron helps heal your bladder, then in time you should not be having the burning following. Some people use Heparin for the same reason (to stop the bleeding in the bladder), but Elmiron is meant to rebuild the lining, so it works differently. Give it time! It may help you! I know people that have relied on their Elmiron instills to get them OUT of flares once they are stable (and might have had something bad to eat that caused the flare).

[Jenny76]

I have exactly the same problem! I have this terrible burning pain and feeling of having to void for the entire day of the procedure. It is really a BAD feeling. I hope that these Instills are not making it worse.

[dana06]

About 3 weeks ago my dr suggested doing the Elmiron Instills. I was getting DMSO's once a week and they were making things worse!!!! The first day I have the instill with an 8 french female cath (pediatric) I feel crappy, but then the next few days are not too bad but not super great. But I feel better than I did when I was getting the DMSO. What you can do is ask that they put in some lidocain gel before the cath you and see if that helps. That is what I get done so that way the cath is not so irritating. I have mixed feelings in regards to whether I am going to continue these but for now less painful than DMSO.

IC diagnosed in 1999

Current meds:
600 mg of Elmiron
Atarax
Prosed
Bella Donna and opium suppositories
Seroquel
Wellbutrin

Meds that didn't work-Ditropan (made my sight blurred and also bad retention).

[bunnykinb]

My past uro did Elmiron instills mixed with saline solution only. I did it bi monthly and then monthly but it didn't help. I wonder too with Heparin instills if maybe either one more frequently would have been better. I now get DMSO which burns me to pieces.

[dana06]

DMSO's are PAINFULL. I usually have to take a Bella Donna & Opium suppositories. Elmirion instills don't hurt nearly as bad. I did the heprin, sodium bicarbinate, and lidocaine instills and they did not do much. However I am very sensitive folley wise.

[dana06]

I don't know if your dr's do this but mine does, they put in a lidocaine jell a few minutes before the cath and it totally helps with the pain.

[Babs RN]

The lidocaine gel is helpful for alot of people. I hope you are able to find a mix with the Elmiron and and instill liquid that isn't painful for you.

Hugs,
Barb:)

[gigisgirl]

I had my 1st elmiron instill today and I was ok until I peed it out an hour later. OMG I'm in so much pain. And my pee smelled so bad. She wants me to come back on Wednesday for another one. I guess I'll stick it out and see if it will help.

[bunnykinb]

I had asked my uro for a prescription of lidocaine 2% jelly to apply whenever I feel really ouchie.