Elmiron Instill?

[Kathleen Philli]

Someone on this forum mentioned getting elmiron instillations. They also said that elmiron did not work for them by mouth. I am fortunate that oral emiron usually controls my symptoms, however I am now flaring and would try anything. I would like to get Elmiron for instillation if it is not too difficult to get please help if you have any info. I have not done well in the past with heparin, xylocaine and rimso made things worse.

[Kathy in Canada]

Elmiron instills

High Kathleen,

My dr orders Elmiron instills up to daily if flaring. I don't live near his office. I do them myself. There are composed of 2 capsules of Elmiron (emptied out capsules) into 20 cc of sterile water in a sterile urine bottle, then add 6 ml of Sodium Bicarbonate injectable 8.4%, and 12 ml of 2% Lidocaine for injection. They help me a lot. I also use oral Elmiron.

Kathy

[littlemyrn]

Yes, I might be the one you are thinking of. My doctor gave me script for Elmiron/Cytotec (ulcer drug they think will help recoat bladder) and lidocaine. I had it mixed by compound pharmicist first but too expensive, so then she wrote for pill form. I mix it myself and do self caths. She would like for me to do everyday, but just can't. It hurts my urthea and Vulva too much. But it does help. They have found that by the time Elmiron reaches bladder it is at 30%, so instilling directly you are getting full benefits. You may ask your dr. if you could do these at home. It is not hard to learn, my nurse just came in with a mirror and showed me. They also gave lidocaine gel to coat cath to help numb area. Good Luck. Oh, my dr. learned of this cocktail by going to a meeting with a dr. at the Cleveland Clinic. She is so open to anything to try, and so am I if it will help.

[ICNDonna]

Please talk to your doctor before instilling anything into your bladder.

Donna

[snicole]

hi kathy

thats exactly what i get but my doc does them. im too afraid to do them myself. ill end up rupturing something

[Kathleen Philli]

Good info

Thanks guys (gals) this is really helpful information. My flare is already getting better so I will probably not need to try this this time, but, alas, there will probably be a next time and I will definitely try it then. I am a bit leary about doing self instills, and not because I am afraid to insert the catheter. My biggest fear, and it is well founded is that even with the most careful technique, eventually, I will give myself a UTI. In my other life, before I got all of my medical problems, I was a surgeon. I am well versed in sterile technique, and when you are shoving a catheter from a dirty area up into a sterile one like the bladder, with limited visualization, its like playing russian roulette. Besides the fact, that the most likely place I would be performing this joyless task would be in the least clean room of the house, the bathroom., behind it's locked door so that my 9 year old wouldn't walk in unannounced and get freaked out. I read recently that some of the gurus that treat a lot of IC patients are adding gentamycin (an antibiotic) to their instills for that reason. For those doing self instills who get a lot of UTI's it might be something to ask your doctor about. Anyway, this looks to be a lot cheaper than cystistat which is $200 a treatment just for the med. Anyway thanks again, and good luck to all

[icnmgrjill]

Please read our chapter on rescue instillations in the ICN Patient Handbook: http://www.ic-network.com/handbook/

It includes three formulas for these cocktails. But, please remember that you must be VERY CAREFUL when mixing rescues. Follow your doctors instructions carefully because if you got too much lidocaine, there can be serious consequences.

Jill