Elmiron instills

[justice4j]

Hi Everyone,

My uro has Rxd Elmiron instead of Heparin for instillations. Do any of you draw up several doses at a time so that you can take them with you?

Does anyone know what the stability of Elmiron is, in terms of time after all 3 meds. are mixed together? Forgot to ask my uro.

I'm hoping someone knows from experience.

Thanks!:smile tee

[Nancypt]

hi,
I just bring my Elmiron pills with me and they mix it up right before they give me the instillation
nancy

[justice4j]

Hi,

I would prefer to line the syringes up and do several at a time even when I am home. There is less chance for infection. When we make the solution ourselves in our own homes, we have immunity to our own "germs". One of the few times I've ever had an infection in the 10 years I've been doing my own instillations was when I was doing them away from home. Sometimes that is necessary, but I prefer not to do instills away from home anyway.

Mixing the solution in one's own enviornment cuts down on that risk. My uro's research RN told me that there is less chance for infection in one's own enviornment just today. This makes total sense to me

Also, for me, it would be more efficient to just mix a few and have them ready.

Thanks, though.

I just still need to know if anyone knows the time/stability of Elmiron once it is mixed into solution.

Thanks.

[glassd18]

I'm getting my first Elmiron instill tomorrow, and I'm excited!!! It will be Elmiron, Lidocaine, and Sodium Bicarb I think. I'll ask the nurse your question tomorrow, and report back tomorrow because I too am curious about this. I'm picking up my pills tonight and I bring them with me.

[bunnykinb]

Nancy,

When did you start doing instills? I am learning how to do instills. Today, I drew up all medications myself. My cath keeps coming out once I the meds are poured into the syringe. The nurse thinks that when I am lying partially down, that when I curl up to put the meds in, my stomach muscles are tightening causing the cath to poke out. I know the cath was in because the urine drained out. Hmm.

[Nancypt]

I was diagnosied with IC in Sept 2006 and have difficulty swallowing pills so did the Elmiron instillations at the drs office for awhile. They seemed to help and I started P.T. about a year ago so stopped the instilllations. Recently my dr asked me to do them again 1-2 x a week for 10 weeks. I lost track of time but think:woohoo: that is what I did ( i had jury duty so got distracted). I go back to the urologist on Friday so will see what he says. I do them in the office not sure I could do them on my own.
Nancy

[Nancypt]

oops don't know why that icon got put in there. I was half asleep when I typed that
Nancy

[bunnykinb]

The nurse told me that the uro likes to have his patients learn how to do instills. I have an approval to see a urogynecologist but haven't made the appointment yet because of the instills. I wanted to see if the instills are helping. Yet, I want to ask the urogynecologist if my burning area is IC related since the other two gynecologist didn't know what it was. I thought maybe I had VV also.

How have you been?

[glassd18]

Hi there. Well I am feeling definitely no pain right now so my first Elmiron instillation worked...yeah, but I was told not to keep it in for more than 20 mins, and I can't pee!!!!! It's like I'm numb. I'm drinking a lot of water though so at least it's getting diluted. I didn't have very much P in my bladder before the instill which is good because I went just before so I'm not retaining anything today. There was only 50cc's in there. Is it going to hurt me that I can't pee yet? The tech told me that if I want to do instills at home I could, but that they teach the husbands too!!!! Yikes. I don't know if my hubby could do an instill for me. The cath hurt quite a bit going in so I don't know if I could do them myself. The charge for todays visit was $ 343.00, and I was literally in there for 5 or 10 minutes. I sure hope my copay covers it!!!

[glassd18]

Oops forgot to ask about the stability of Elmiron in solution. She did tell me though that it is like taking it orally. One thing I don't know, and she didn't think would happen is if the side effects were the same.

[bunnykinb]

With 2 Elmiron capsules, I had to keep the instill in for 45 minutes and was told to rotate myself from side, to back, to the other side, and stomach.

I don't think my hubby wants to learn either.

[justice4j]

Hi,

I really would encourage anyone who is able/willing to learn to do their own instillations. For me, this *&*(^ disease:rant: has too much control over my life as it is. So, to be able to just instill the meds myself gives me back a measure of control. Plus, it's so much more comfortable being able to rest in my own bed after the instill.

It's really not that bad to do them yourself. You get used to it really fast when you have the positive re-enforcement (sp?) of pain relief. I can actually do the instillation itself in a shorter time than it takes to draw the meds up in the syringe.

[maryla]

glassd,

Yes, it's like Janet said doing your own instill does give power back to us.

MY uro at the Cleveland Clinic says that it is NOT like taking Elmiron orally. He claims that when it is ingested orally, by the time it gets through the digestive tract and into your bladder. You actually are only getting 3% of what you take. So, according to him, you might as well put it where you need it, into the bladder.

I took Elmiron for a year and a half and my hair started to fall out. I started putting it in my bladder almost 2 yrs ago and have noticed my hair is growing back now.:woohoo::woohoo::woohoo:

Yes, doing your own instills gets easier over time. At first I needed a mirror to put the cath in. Now, I just sit on the pot and empty and then just stick my cath in. I don't even have to look anymore.

Hope this helps. Blessings,

[barbclay]

I cannot take elmiron orally-it gave me headaches. It makes so much more sense to put it where it hurts. How much are you guys using? are you using it instead of the heperin because of all the recalls? Thanks Barb

[glassd18]

Thanks for the encouragement to do self instills. It's just that the cath hurt so much going in that I think I'd have a hard time inflicting that upon myself. Is this unusual or is this something you get used to. It was like a shard of glass going in. I was diagnosed with urethral polyps or bumps near the urethra so maybe that makes it worse. How long do we do these instills for? Is it 10 treatments or for the rest of our lives? My instill results are starting to wear off I think. I had a couple of pretty good days though, and I can only imagine that it would get better. Thanks!!!

[glassd18]

Hi Barbclay: My office said they are doing these instills in replacement of the heparin, but I think that Elmiron instills are an option as well. They called it a Parson's Instill. I will want to stick with the Elmiron I think as it treats the disease by coating the bladder.

[justice4j]

Mary, Barb, and Glassd,

I've been doing instills since about 1999 with Heparin. I've just been Rxd Elmiron instills mainly because the last 8 months have been a little too full of flares and also because Heparin is so difficult to get.

I will never forget the kindness of another IC patient when I first began the Heparin instills on a regular basis. My uro was kind enough to call one of his patients that had been using Heparin for a while. She was a special ed. teacher and invited me to her home where she taught me. Not only that, I was waiting for the first Heparin and cath supply order to arrive and she GAVE me enough Heparin and cath supplies to last until my order arrived. She would not allow me to pay her, or give her any Heparin when I received mine. As a fellow IC patient, she could not stand the thought of me being in pain one more minute than I had to be.

Once you get used to your own anatomy, it's no big deal. Yes, the catheter hurts a little sometimes when I am really sore because I think most of my IC damage is where my bladder "joins" the urethra. I think I have severe IC, but I seem to remember my capacity was not too bad....maybe 650ccs? I can't remember what normal capacity is VickyV?

Anyway, when I feel resisitance and discomfort from inserting the cath, I take a deep breath, and blow it out as I continue. Sometimes, I even just insert the catheter quickly even though it might hurt a little. I just keep thinking of the relief the meds will bring and to me it is well worth the initial discomfort.

Doing instills at home eventually will become a really small deal and very effective means of treating your pain.

As I said earlier, I focus on the fact that I can do an instill at 2 AM if I need to and not have to bother with an office or ER visit. To me, the empowerment of doing my own treatment and the convenience that goes along with that is priceless.

As hard as it is to relax while you are having pain, try your best. Maybe the deep breathing will help, or you will find your own way.

I just remembered my very first time instilling at home. It was years ago and one of the Dr.s I worked with Rxd some DMSO and sterile water (I think water...) along with the supplies.

At the time, I had someone I dearly loved like a second mother who helped me by cleaning my house. But, she loved me like a daughter and would do everything she could to help me the days she would come. This dear lady held the mirror while I did the instill of DMSO. I was still an ER nurse at the time and was trying my best to make the procedure as sterile as possible. Of course, we all learn that at home it is more like making it as clean a procedure as possible.

My dear friend Aurora died in Dec. I have her picture in my computer room. I often look at her and think what a service of love she gave me. When she would come, she'd strip the sheets and wash them first thing. The minute the bed was made, she'd tell me and I would move from my couch into the cosiest, best made bed. She meant a lot to me and I know that she knew I loved her very much. She was just an angel.

[justice4j]

Hi,

Barb, your uro is absolutely correct. Only about 3% of Elmiron is absorbed when taken orally. http://www.drugs.com/pro/elmiron.html That fact is on the site of the link I posted.

[justice4j]

https://www.ortho-mcneilpharmaceutical.com/ortho-mcneilpharmaceutical/shared/pi/elmiron.pdf