Instill mix changed: followup - gotta laugh!

[tesschron]

Alright - to summarize I get a call last Friday 2 hours before my usual rescue instill telling me I need to go get Elmiron at the pharmacy cause there is no heparin available. When I asked what the side effects would be of Elmiron in the bladder, the response was " well we don't know, we have only been doing this 2 weeks." Huh? for a drug that has been out at least 10 years, you can't tell me if the instill effects are the same or different from the oral? I refused to participate, told her she could put in a prescription for Elmiron I would look at over the weekend, then checked with my pharmacist on Saturday, and he had plenty of heparin, 2 20KCC vials, and plenty of 5KCC as well. So I call first thing today, leave a message for the nurse, ask for hepain prescription, get a call back from her - now the following pieces together a disjointed conversation with the nurse, my conversation with the pharmacist, and his input on his conversation with the nurse. The problem was not no heparin, or recalled heparin - it was their supplier no longer makes 10,000CC vials of heparin, which is what they use. So they dropped heparin completely without looking at other vial sizes and went to Elmiron - "cause heparin is just not available". When she called the pharmacist, he described what he had, the nurse started to tell him that he couldn't fill the prescription - until he explained to her that she could use half a vial of the 20Kcc, and that would equal 1 dose. Seriously, I am not making this up. Now, the pharmacist did state that he could not get any more 20 K vials, but there was plenty of 5K available - which means two vials per instillation. So there are goodness knows how many patients that were just switched to Elmiron because either my doctor or - if he relied on her - the nurse - could not figure out to check pharmacies - or order a different size vial. I had to laugh, or who needed Elmiron side effects - there would be clumps of hair missing due to the frustration.:) In the meantime, I have one successful instillation and 3 remaining doses of heparin in my possession and am good to the end of the year....

terry, now on the "problem patient" list, I am sure....thank goodness I was a "why, why, why not" child

[justice4j]

Terry,
You are right to advocate for yourself. When I did home instills with Heparin, my dose was 50,000 U. I started with 20,000 U about 10 years ago. My argument would be what's wrong with the higher dose? But, I was an RN in ER and OR for 17 years and I think nothing of questioning Dr.s about treatment. If I don't have one that will "partner" with me in my care, I find one who will. I am fortunate that I haven't had a problem finding those kinds of Dr.s. I also go prepared with journal articles etc. if necessary too. That helps.

I got PAP from J&J, I asked to switch to Elmiron b/c I wanted to try that in instills. BTW, Dr. Parsons at UCSD has several patients on Elmiron capsule contents instills besides me.

[ICNDonna]

Good for you!

Donna

[tesschron]

That was my problem in a nutshell, Janet - the heparin rescue instill has worked for me for 10 years, lasting 3 months - with the exceptions occuring in the last 2 years with me entering menopause, flareups occuring at a specific point in the birth control pill pack - ie, my cycle. My original doctor, whom I loved, would have been an active participant in my care - but he retired last year. The guy I go to now is who he referred his patients to as backup. And so far I am underwhelmed. When I called the new guy and asked for assistance with the cycle change originally, the relayed message through the nurse was "not my problem". My ob/gyn fortunately helped me work through it. I have found that if I schedule a visit, and demonstrate my knowledge, he will "get down" with me as far as treatment as long as it is urological. If my doctor had called me, sat me down, and explained that Elmiron might assist with stabilizing that change, or b) explained it might get me off instills and completely heal my bladder orc)any other logical reason, I would have considered a change, weighing benefits against side effects. But I haven't gotten any information as to why I should switch. If you know of any sources comparing the two, let me know, I am interested. In the meantime, I will schedule a yearly just to have a review with this guy. And also go online and see if I can find someone else that is relatively local....

terry