HELP!!! instillation mix changed, feedback?

[tesschron]

I get an instillation once every three months, which leaves me symptom free. Apparently I was getting heparin with lidocaine and something else, I have forgotten. Well I had an appt today, and the nurse calls me and says, the instillation has changed because of a heparin recall. Apparently, my last instill in March was just under the wire. They are now using Elmiron, where I pick up a prescription and they crush up two capsules and mix it in. I asked why I had to have Elmiron, not having heard of this delivery method, and they claimed that the lidocaine wouldn't hold without it. But they couldn't tell me what side effects of Elmiron would be applicable in an instillation, as they have only been doing this for two weeks. :( So, can you help me out? Is this a vailid instillation, and what symptoms should I expect? Does it work as well as the heparin? are there other ingredients that work as well or better that I can request? This is a doctor that inherited me from my first doc who retired, and I don't see the up to date knowledge and treatment, so I would be more than happy to educate him if something works better.
Input please, I am very concerned about losing my quality of life with this change.....

terry with maybe a week left before flareup without treatment

[waterflow]

You should be able to find heparin now. I had my instills done even during the heparin recall. Was ifffy a few times but did manage to get some. For me just the lidocaine alone instilled did nothing for any of it. My uro told me in the beginning ( I asked about mixing elmiron with heparin) that elmiron was the same as heparin so he wouldn't mix the both. I do know when I tried doing just the lidocaine/elmiron on my own at home it did nothing for me either. I didn't have any side effects from the elimron like I did when I took it by mouth. I have read where some people do get the same amount of help with the elmiron instillation as the heparin. It is really different for everyone. Maybe you could call around to different pharmacies and see if they could get the heparin for you?

[L. Thomas]

My urogyne does clinical research on IC so I feel certain his recommendations are appropriate. He told me I can substitue Elmrion for heparin untill heparin is more available. I am sure your MD is following safe recommendations for use of instills.

Generic heparine from Baxter (recalled) is still not available. There are a couple of brand name manufactures of heparine available. Many pharmacies use suppliers that don't carry brand name heparin.

As some have side effects of all treatment you may have side effects. I was told I shouldn't have any side effects. Lidocane numbs never ending for about 4 hours.

[Wolfe]

Isn't that funny! My original uro told me that Elmiron and heparin were the same thing too, but our moderator here on the IC Network says no, they're very different. And I believe her.

Has anyone heard of a rescue instill that DOES include both heparin and Elmiron?

[prestwood16]

Isn't that funny! My original uro told me that Elmiron and heparin were the same thing too, but our moderator here on the IC Network says no, they're very different. And I believe her.

Has anyone heard of a rescue instill that DOES include both heparin and Elmiron?

I haven't had an instillation where both heparin and elmiron were used, but I have had a heparin instillation and the now having to do the Elmiron Instillations. The heparin instillations seemed to last a lot longer. Almost twice as long, but I do get relief with the Elmiron. So something is better then nothing, I guess:confused: I do home instillations and and I have to pay $140 upfront for the elmirom mix (i use compound pharmacy) I haven't ever got to but the Heparin mix to know if it might be cheaper. But, my insurance does reimburace me $120 so I not complaining. But, I truely hope Heparin generic gets back on the market soon b/c I really did seem to do much better with it, but the Elmiron at least does give me some relief. And, as the person stated earlier none of the side effects u usually get from elmiron from taking it orally. But everyone cross your fingers we will all ( in all areas) get heparin back!:pray:

[srh20]

Hi All,

Approximately, how much does it cost to have a compounding pharmacy prepare the heparin-lidocaine-sodium bicarb instillation?

Many thanks for your help here!!

srh20

[L. Thomas]

I had 30 compunded in 2004 and it cost $175

If your MD has OK'ed home instills you may want to learn how to mix them yourself. My insurance covers everything but the needles and an instill cost a little less than $0.50.

[srh20]

Thanks for the prompt reply!!

[mlasorsa]

I am doing my bladder instillaton treatments at home and have a mini-lab in my bathroom, but it works. I mix Elmiron, cytotec, and sodium bicarbonate with the lidocaine. I just crush the pills in a pill crusher and mix them together then add the lidocaine and instill it via a catheter. It works fine. It would save you so much money. Good luck with your instillation therapy. It has rescued me from pain and flares!:angel:

[bunnykinb]

It is easy to do your mix at home instead of a compounding pharmacy.

[Briza]

For those of you who do at home rescue instills w/ heparin, can you take a look at your heparin vials and see if the ingredients listed say that they contain sodium chloride (aka table salt)?
Thanks!
Bri:)